April 18, 2010
Well, as you can see, my faithfulness at keeping you updated on our activites has not been stellar! However, we continue to enjoy Virginia and the many things which we have been seeing and doing. As I have purposely steered many to this update through my Facebook page, I'll start with the reason - a personal request for you to consider something.
In September, 2008, the Houston/Galveston area suffered one of the most significant natural disasters I can remember since Tropical Storm Allison did so much damage in the late 1990's. This, of course, was Hurricane Ike. Ike damaged us personally - we lost our fence, had our roof damaged beyond repair, and a few other inconveniences. However, to many, it was much more serious. Many lost their homes and businesses, and many icons were destroyed. One significant piece of near-destruction was the terrible damage inflicted on the Galveston Island Railroad Museum. Over 8 feet of water flooded the museum and the rail yard out back. While everything was damaged to varying degrees, much was destroyed. As you may recall, this was one of Caleb Joshua's most treasured places. He truly loved to go to the museum, to climb on the trains (especially the post office car!) and to imagine. When the tumor took away his ability to climb, we pushed him among the trains in his stroller. For reasons I do not understand, it was a place he found some peace. Since Hurricane Ike, it has been closed due to the catastrophic damage.
The museum is small, but has a great staff and a dedicated core of volunteers! I give thanks and praise to God for them, as without them, Caleb would not have experienced the museum. You can visit their web site at http://www.galvestonrrmuseum.com. If you click on the "Bulletin Board" link on the left, you can see pictures of the devastation as well as the rebuilding activities.
The Railroad Museum has been a true blessing to our family. Aside from simply providing the special place Caleb loved, they visited his funeral services! They also allowed Annette and I to visit and opened the rail yard so we could walk among the trains during our last trip to Texas in August, 2007 -- despite the museum being closed. They have felt Caleb's loss along with us, and remembered him in various ways. They have provided support to Annette and I through our grief in ways that they themselves do not know or understand.
Now, they need our help.
Because of the efforts of the staff, volunteers, and board of directors, the museum is hoping to reopen late Summer, 2010. Thousands of volunteer hours have gone into cleaning up, rebuilding, tearing out, and fixing. They have received significant FEMA assistance, and very generous grants of $100,000 from the Moody Foundation and the Meadows Foundation - however, both are contingent upon the museum raising $100,000 in matching funds. The FEMA grant, also, requires the museum raising a 10% match. At least for the Moody & Meadows grants, they have until June, 2010 to raise the match.
For some reason, I felt it was important to let you all know of the museum's situation. As you know, I'm not really in the habit of asking anyone for money for any cause - however, the Lord laid on my heart to post this note and make you aware of this need. Perhaps He has a bigger plan, and perhaps, this completes some piece of a puzzle for you. In the event that you were praying about a charitable donation (the museum is a 501(c)(3) nonprofit), or in the event you otherwise feel called to help, it would make a big difference to this wonderful Museum which brought Caleb - and us - much happiness. Here are some pictures for you to enjoy of Caleb at the museum -> http://www.flickr.com/photos/dad2caleb/sets/72157623881288466/ If you viewed the photos under the "Bulletin Board" link on the website, you can appreciate the devastation the storm caused.
All donations can be mailed to:
The Galveston Island Railroad Museum
2602 Santa Fe Place
Galveston, Texas 77550
No need to mention anything to us, just something for you to privately consider. And thanks so much for considering this need.
Now, the rest of the Ingram update ...
Well, the winter ended up coming to a close and now we're seeing some very nice weather. I'd definitely still call it "Spring" - it gets cold in the mornings (30's-40's) ... but the day warms up nicely into the 70's and even 80's. I've been running much more, now that warmer weather is here, and the views of the Virginia spring are wonderful.
So, at the very end of February, Annette and I celebrated the occasion of my #40 with a trip to colonial Williamsburg, VA. We stopped at the Russell Stover factory on the way down, and visited a few nice vineyards along the way there. We rented out a room at a colonial-era Tavern (right in the historic district) and we ate dinner at an old Tavern right next to the State Capitol. We enjoyed the few days of peace, tranquility, touring, and fine dining. We then headed across VA to Blacksburg, home of Virginia Tech, for a few days in Hokieland. Annette was able to meet my dear friends Betsy & Lisa, and we all enjoyed lunch together. We also had breakfast with Jim Glanville and his wife Deena - Jim was my freshman Chemistry professor back in 1988, believe it or not, and we have remained friends since then. In his retirement, he's making quite a name for himself in the history of Southwestern Virginia, and has even determined that the first englishman to visit the area was likely named David Ingram! No kidding.
March was a whirlwind, with three trips to Virginia Tech for various presentations & meetings and Annette and I enjoying the weekends as we could. Of course, Uncle Sam and taxtime consumed lots of weekend time in March/April, but glad to be past that now!
One of the highlights of March was the visit from our dear friends Shawn & Sandy Smith, parents of Super Andrew (http://www.caringbridge.org/visit/aws). Andrew passed away from DIPG on December 4, 2009, and we are glad we were able to get to know him before he departed this life for the next. Shawn and Sandy are wonderful people and we're so happy to have had a few days to spend with them - and we hope to see the kids next time! Shawn and I visited the Manassas Battlefield while Annette & Sandy did "girl stuff" - and we all gathered for some nice meals and even a trip to the Holocaust Museum in DC. Wow -- a very moving place.
Our Lenten season was nice, but as always, we could always use more prayer! We had a wonderful mission at our Church during Lent - Fr Larry Richards came to visit and he had some great messages for us all. It was truly one of the blessings of lent for us. Easter Sunday, we enjoyed the company of our friends the Parisi's and the Bookwalter's, and Natashia came down to spend the weekend with us from her new perch in NYC. We also enjoyed a great lunch at our hangout the Apple House, out in Linden, on Saturday. Truly a wonderful weekend.
Other than that, the big projects in the Ingram house are getting some steps built so we can actually access our new patio out back (!) from the house, getting the yard ready for spring, and planning our upcoming trips to Texas. Our niece Julianna is getting Confirmed shortly, and we're looking VERY forward to being there for that. Incidentally, I'll also use the time to pile on some good Taco Cabana calories :-)
So, I'd better get off to the Saturday AM run to "make room" ... if you've not friended me on Facebook please do that as you can keep in much more 'real time' contact with me! I'll continue to update this site and keep you apprised of our activities.
Praying that you are well, and, as always, giving thanks to God for the blessings you bring to our lives.
February 6, 2010
Well, here we sit for the second time in as many months ... completely snowed in !!! The snow is quite deep, and is still falling at this time. The weather forecasts I've seen show it to be tapering this evening - so hopefully, we can begin the task of shoveling out to civilization tomorrow. But we're warm and toasty inside, and had the thought to hit the grocery store yesterday morning so we're well fed, too!
Yesterday morning, I returned from a week-long business trip to Singapore. It was nice to be in a warm tropical climate for a little while! I enjoyed some great food, caught up with some good friends, and met some new people. On Thursday morning Feb 4 (Singapore time) I saw the blizzard heading for DC and figured I'd better try and get back home before it struck. My flight was to arrive on Friday evening at 10:30 PM - well into the blizzard. After some last minute hustling by our travel agency and my colleagues, I was on a flight home to the US that afternoon. 16 hours later, I landed in Los Angeles and began the mammoth layover until the red eye flight to DC that night. As I was ordering the coffee in the LA Airport, the guy from Starbucks says to me, "Man, you look tired!" I told him I didn't even know what day it was. He responded, "It's Thursday, February 4 ..." and I thought to myself, it has been Thursday February 4 for as long as I can remember! So I calculated that for me, Thursday, February 4 was 40 hours long! How I wish I could do that one every day! I got a tremendous amount done! Anyhow, I landed in DC at 7 AM on Friday morning, about 3 hours before the snowfall began. Close timing -- but now, upon seeing the storm, it's a very good thing I did. Likely would've been Tuesday before I could have gotten home.
Annette and I have continued to enjoy ourselves. The weekend before I left for Singapore, we had lunch at the Apple House and toured a few vineyards in the Blue Ridge. Hope to do more of the same next weekend - we'll see.
Hope you are all well.
January 29, 2010
Happy New Year, dear friends. We pray that 2010 is a year of much success, health, and happiness for you and yours.
We've begun 2010 a bit dlfferently than I hope the rest of the year goes -- a LOT of work! I have worked extensively over the last month, as it seems many things just coincidentally converged in January. Annette has spent the month working on putting away Christmas :-( , creating some new decorative pieces for the house (she's great at that), keeping up our house, and working on things for Just One More Day (The foundation we work with). We have managed to enjoy the weekends together, however, with some lunches at the Apple House and a few visits out to the more rural roads of the Blue Ridge. After this week, I expect things to be MUCH more sedate and hope we'll be able to take a few days' to tour Virginia before spring arrives.
Last weekend, we heard a friend give a witness talk at Church. It was fantastic - a moving story of how she and her family came to the Church. The next morning during my quiet devotional time, I decided to open the bible to John 6. I pondered the text, and then felt called to flip a few pages forward to read the narrative of the Last Supper. Jesus was washing Peter's feet. Don't know why. Anyway, my eyes landed on this text and immediately its significance became clear for me:
Jesus answered and said to him, "What I am doing, you do not understand now, but you will understand later."
I pondered the text for a few minutes, and glanced up at the heading of the chapter - "CHAPTER 13." (Jn 13:7)
This also snapped me back to an earlier entry ... Wednesday, August 20, 2008. How very similar ... particularly, the words I ascribed to Caleb Joshua.
So much has happened over the last few years. Of course, I could look back over life and say the same - but the last 3-1/2 years of DIPG topped it all. And I must admit, I do not understand. But I know that the One who is in charge of the universe does understand, and I know that He makes all things work for good. Clearly, Jesus' disciples were terribly confused about what He was doing - not just at that moment - but He was steady. "You do not understand now, but you will understand later."
Amen, I will await the day when we all "understand."
December 24, 2009 - Christmas Eve
Well, my friends, a very Merry Christmas to each and every one of you. The holidays - and, a few days off - give me the occasion to pen an update for Caleb's website. I realize I've not been a very faithful correspondent lately (!) but it's been a time of much emotional ups and downs, lots of travel, and a complete computer crash - yes, lots has been going on in the Ingram household, and so it's time to catch up on the last few months' of life.
Rewinding back to September, when I last really left off ... I began quite a lot of travel in the last part of the year. Since September, I've been to Virginia Tech twice, to the UK (London), to China (Hong Kong), to Michigan twice, to Jacksonville Florida for Thanksgiving, and on a weekend retreat with the Church youth up in West Virginia. While I've enjoyed those (well, mostly ... more later) a lot, it's good to be home for some time. It's been quite a while.
I was able to spend a total of about a week and a half down at Virginia Tech in September and October, engaged in annual recruiting efforts. I do so enjoy spending time with the students - hearing their career aspirations, learning about the neat things going on at Virginia Tech, and of course sharing opportunities with a great company with them - so it's always enjoyable. Being back on campus also reminds me of when I lived and breathed that life so many years ago - it was one of the best times in life, and it's funny how the experiences of life make you realize that more with each passing year. I met some great young people. I also enjoyed running quite a lot while I was there. Due to the schedule, however, it was typically in the wee morning hours before daylight - one particular morning, I was running down a pitch dark street, in a neighborhood, amidst significant fog at 5:30 AM. You could barely see 10 feet in front of you. I don't think I've been in that neighborhood in 15 years, but it's funny I still remember it well enough to get around in the fog. Some things you never forget.
In October, I had a week-long meeting in London. At the end of the week, Annette flew over and joined me and we spent 3 days touring London and the UK countryside. You can see some pictures of our adventure here. We had a good time - saw all the required London sights, as well as made a trip out to Stonehenge and the cities of Bath & Laycock. Even saw the Queen from a few hundred feet. Visiting the UK was really something - villages that are from the 1300's - long before the United States was even a thought in anyone's mind. Enjoyed some pub time, and met some nice people. Ate Bangers and Mash. One casualty from the trip: Annette's curling iron. Lesson: adapter is not the same thing as "converter" ! :-) 240V in a 120V curling iron generates quite a bit of heat! Check the pictures out, we had a great time.
In November, I headed to Hong Kong for a week - Annette took the time to go visit our dear friends the Smiths in Michigan. My stomach discovered new culinary items like pigeon, steamed fish, and uncooked salmon. My new friends taught me some great chopsticks skills, and I enjoyed seeing the culture of Hong Kong. When I returned to the US, Annette called and said she - and the Smiths - were driving back here, as there was a new treatment protocol at NIH which Andrew might be eligible for (anyone who is a regular reader will know of our 8-year old friend Andrew Smith, who had DIPG - same as Caleb). So, I got a real treat - to see the Smiths, and got my wife back early! I will not go in to all the details here, but in the end, Andrew and his family returned to Michigan where young Andrew passed into the waiting arms of God on December 4 (see previous entry of December 4). An old saying goes, "When you enter the world, you cry and the world rejoices. When you leave the world, the world cries and you rejoice." Very true in this case. I know that Andrew is experiencing joy beyond all human imagination now, but we sure do miss him here. Annette and I traveled to Lansing to attend Andrew's services which were nothing short of amazing. Truly befitting of an amazing young man. Seeing all his friends and those he had inspired was touching. Fortunately, we were able to also see other special families who have walked our road - Kim & Ken Spady, Christine Martin, Brooke Desserich, Neely Agin, Sheila Jones, and Linda Pohly - all touched by DIPG - were there to support Andrew's family and say goodbye - "for now" - to Andrew. God bless you, Andrew. Reminder - you can read about Andrew's journey here.
December 6 was Caleb's birthday - he would have been 7 years old. I voted at Nokesville Elementary in November, and as I walked the halls on the way to the Gym, I thought of how happy he would have been there. A great little school in a little town, with a big cow painted on the barn at the edge of town. He was so proud to go to school, and how he wanted to take the big yellow bus! I also think of how much he would have enjoyed meeting me at the train station with Annette each evening, as the big diesel rumbles into the station and I hop off to give him a hug. It reminds me how he used to wave goodbye from the couch in the morning, watching Higglytown Heroes, and say, "Have a good day, Dad!" And, how he'd run to the door when I came home at night to give me a hug. Wow, I miss that. Anyway, December 6 we were in Michigan preparing for Andrew's services - and I know Caleb was with us. We released balloons to him as a "Happy Birthday" here from Earth, and I ate pizza, pretzel, and drank a diet coke at Sam's Club - with a shot of "red", in honor of Caleb. Thanks to our dear friends for celebrating Caleb's birthday with us, even amidst the grief of another child's loss. How lucky we are to have our friends ... those near, and far ... we love you all.
Since we returned from Michigan, we have worked, worked, worked. Annette has been busy decorating the house (I'll post some pictures to Facebook) and I have been completely consumed at work. Now, we pause for a few days - to reflect on the birth of the Savior, to enjoy time with friends and family, and to give thanks for the many blessings in our lives.
Natashia and Christopher arrive today from Houston to spend Christmas with us. It will be great to see them, and spend some downtime.
Saturday, we'll head to Snowshoe for a few days' skiing. The weather looks great - please pray that none of us breaks anything!
We wish each of you a blessed Christmas, and a very Happy New year. We give thanks to God for the gift of each of you in our lives. You've truly carried us through some rough times - and we feel so blessed. MERRY CHRISTMAS!
December 4, 2009
In Memory of Andrew Smith
"I'm not Superman. I just have a Superman shirt on."
Those were the first words ever spoken to me by Andrew Wayne Smith, at our first meeting in which I greeted him with the title, "Superman." I could not think of a more appropriate title for this incredible 8 year old boy - either then, nor now. Early this morning, 11 months later, "Super Andrew" passed into the waiting arms of God in Lansing, MI, taken from this earthly life far too young by a brain tumor known all too well to us. DIPG.
Andrew leaves behind on Earth his mom, Sandy; his dad, Shawn; and his brother and sister, Stephen and Charis Joy. Please, stop by Andrew's web site and learn about this amazing boy and leave a message for his family. http://www.caringbridge.org/visit/aws.
I give thanks to God that I was able to meet Andrew several times. He never ceased to touch me deeply. His smile was infectious, and you could feel the love this young man had within him for Christ, and for just about everyone. But one more thing about him is probably what I will always remember ......
I have always been a big fan of attitude. A wise person once said you can't choose your circumstances, but you can sure choose your attitude. Andrew understood that. I was privileged to spend a few days with him in July when he came home from the hospital. As he lay in bed watching TV, and I sat beside him, he looked over and he asked me something. I couldn't quite understand him (tumor, you know) so I asked him to repeat it making an excuse about my poor hearing. I still couldn't figure it out. So I asked again. Still no luck. Nobody else in the immediate vicinity to ask for interpretation from, so I had to ask a fourth time. After the 7th or 8th time there was nothing else left to blame it on. I said "I"m sorry Andrew, try it one more time", and I looked into his eyes expecting to see either sadness at his situation or annoyance at me. But instead, he just looked at me with those big eyes, and a smile came over his face and he started laughing. We laughed together. Oh Andrew, how I admired your attitude. In the midst of that, you found humor in the situation. God love you.
As I sit writing this, I glance in front of me on my desk and lay my eyes upon the small, hand-painted yellow wooden truck that was gifted to me by Andrew when I left his house in July. Andrew, it will forever remain one of the most special things I own.
Andrew - or "Andrew Picasso," as I came to call him (following an episode in March where he painted my fingers green) - had a singularly sharp wit and a sense of humor that made me smile deep inside. You know the kind. I asked him when I saw him a few weeks ago if he minded that I called him "Andrew Picasso" and he motioned "No" with his eyes; it was all he had left to communicate with; the tumor took most everything else. How I wish I could see those eyes again. I await the day, when in God's own time, and by God's own grace, I will.
God bless you, Andrew. Love you.
Saturday, September 26, 2009
WOW!!!! So it's really been nearly two months since I updated anything. If you're still with me looking for something, all I can say is THANKS! So much has been going on with the Ingram household since I last wrote that this will be a bit long. So grab a strong cup of coffee, and sit down for a few minutes while I catch you up on what's been going with us.
There are a few reasons why I've been so long in writing. The first thing is what the last post was ... 2 years since Caleb died. I really struggled with that for some weeks, and probably didn't feel much like writing. Then, we went on vacation so I was away from the computer. Then we returned, and I was underwater at work for a month ... then I went to Virginia Tech for a few days ... anyway, here I am, so let's catch up.
After Caleb's 2-year anniversary, I worked the remainder of the week and hopped a plane to Houston where Annette and I spent the next 10 days on vacation between Houston and San Antonio. I truly enjoyed returning to Texas for a week. Honestly, that feels so much like home to me that it was like "ahh - I'm home." I truly love our life in Virginia, now, but I am, I'm afraid, a converted Texan. It will always be "going home." We spent nearly a week in Houston, visiting with friends, spending time with Caleb, and enjoying being back. I ate at Taco Cabana I don't know how many times, and got my fill for a little while. Thanks for all my friends and family who endured endless meals at Taco Cabana during our trip back to Texas! I visited Fry's, Barnes and Noble, Sam's, and all the places Caleb and I used to go. A few times.
While in Houston, we journeyed to Galveston to visit our dear friends at the Galveston Island Railroad Museum. It was one of Caleb's favorite places, as you may recall. We have kept in touch with Caleb's museum family, and they have continued to remember Caleb and his passion for the trains. It suffered terrible devastation in Hurricane Ike (Sep '08 ... our parting gift from Texas!) and has been closed ever since. A year, now. They are rebuilding, although slowly, with the help of volunteers, staff, and FEMA. Although closed and in temporary trailers, they were kind enough to welcome Annette and I to drop in for a visit and open the gate to allow us to tour the tracks out back where the trains sit that Caleb so loved. It brought me to tears, to see the devastation and to learn of a few casualties that were too badly damaged (i.e., the Whale Belly car). But the rebuilding is going on, and hopefully, with donations, volunteers and God's blessing, it will reopen next year.
After the week, though, I was ready for the journey to San Antonio and the visit with Jorge & Yvonne and the girls.
We had a great stay. We visited the Dry Comal Creek Winery in New Braunfels, we ate lunch in downdown SA, and I literally spent two solid days floating on a raft in Jorge & Yvonne's pool reading a book. Jorge and I shopped a bit, the girls hung out ... we had a great visit. It was also neat to attend mass at our "other" Holy Trinity Church in San Antonio (Jorge & Yvonne's parish). Jorge and I made our ACTS retreat there together in July '05, and the Holy Trinity (San Antonio) family prayed fervently with us and supported us during Caleb's illness and passing. So it feels a bit like home there, too.
While in San Antonio, I resumed running after probably a 6 month hiatus. I hadn't felt called to run, and finally, I just did again. I am back in love with the passtime which sustained me in the months following Caleb Joshua's passing, and as he did before, Caleb drops in on me during my runs. Since returning from Texas, I'm back up to running ~ 20 miles per week. 30 is a good number for me but it's a slow process getting back up there without injuring myself. Funny how I am not as young as I used to be :-)
My job has been quite challenging and active over the last month, as we're wrapping up our planning cycle for next year. I am still enjoying it quite a bit and learning more and more every day. In a few weeks, I'm off to London for a week of work (plus extending a few days to enjoy the sites - Annette's going to come join me!) and in November, I'm heading to China for a week (Annette declined :-( ). Getting to see the globe has been one of the fun things about this job. Before this, I'd seen - uh - Canada. Oh, and Jamaica, on our honeymoon. I have enjoyed meeting new people, experiencing new cultures, and making new friends.
On the home front, Annette and I have found a contractor to build us a patio out back and went through the process of getting it approved through the HOA (!). Hopefully, they can start sometime soon and so by the end of October, we will hopefully have a nice patio out the back that we can sit on to complement the front porch on the front (obviously). SO, all our friends ... come see us! We have plenty of room for you!
The Lord laid on my heart to get back involved in Ministry, again, and so we contacted the Youth team at our parish here in Bristow and they were open to Annette and I joining the High School Youth ministry team. Our first event was the BBQ last week, and we're driving the kids to Laser Tag tonight! Tomorrow, Annette is cooking dinner for 50 hungry teenagers!!! I had forgotten how much I missed watching the Lord work among the high schoolers. What a bunch of truly fantastic young people, and some great adult volunteers that we are thankful we now know. We will see if this is our calling, and where it leads us.
So ... I'd better get ready for laser tag! I hope and pray that you all are well. Annette and I are both on Facebook, now, so come see us and make us your friend!
We love you all, and give thanks for you.
Monday, August 3, 2009
It has now been two years. Two years since we last held you, since we last saw your twinkling eyes, since we last felt your loving embrace. Two years since that sunny Friday afternoon that I tenderly bathed you, dressed you in your shorts & t-shirt, carried your earthly body downstairs and kissed you goodbye – as God lifted your soul into eternal glory in His presence. Caleb, if you were going any other place, I could not have done it.
But, you see, I knew exactly where you had gone. You, Caleb, had gone to where we all long to be. You went to eternal peace, joy, and happiness with God that our human minds can only scarcely imagine. You went home. There is no more brain tumor. There is no more Decadron. There is no more radiation. There are no more needles. There is no more drooling, falling down, having accidents, or being cold. You are free of all of that, Caleb – you are healed, and have become all that God intended you to be. And because I love you, son, I am happy for you.
But the same love that gave me the strength to let you go also makes me miss you badly. In a way, Caleb, perhaps it is my own selfishness. I want to eat Taco Cabana with you again on Saturdays. I want to go hunting around Barnes and Noble for a stool so that you can stand on it and take all the books off the shelf. I want us to go around Sam’s again, spending hours filling the cart up with all the things we would want to have only to put them back again because we know we really don’t need them (and to keep Mom from getting mad at us for spending all that money!!). I want to bring you to the Railroad museum again, and let you stuff “mail” into all the cubbies in the mail car. I want you to change the oil with me again, and see you on the ground in gut-splitting laughter because I tripped over Mommy’s plant and spilled the oil all over the driveway. I want us to go to Starbucks and drink Coffee at 10:30 at night, just because we felt like it. You were so much like me, son, and I found so much joy in your company. I miss you buddy. We all do. I know that Mommy would give anything to have your help in the kitchen again, and take you to the park to play with your “machines”. Sister would love to bring you to Sonic, and watch you dance on the table with cherries falling out your mouth. Bubba would love to play Xbox with you again. The list is endless.
But, Caleb, you have given me a precious gift – a small piece of wisdom. Each day, you remind me of what is important. You remind me that this earth is not our destiny. You remind me that spending time loving others, giving hugs, and spreading joy are the best things in life. And you remind me that, in His own time, God will gather us to Himself for eternal joy, happiness, and peace. What a gift.
You are awesome, son. We love you so much and we give thanks to God for your life. We await the day that we will see you again. In the precious words you left me on your tape recorder – “I love you, and I miss you.”
Wednesday, July 22, 2009
In Memory of Caleb Spady
|Yesterday, another brave DIPG warrior
departed this life for the next. Caleb Spady, an 11-year old young
man from Hinton, Oklahoma, was welcomed into the waiting arms of God
yesterday afternoon after a nearly 16 month battle with DIPG.
I was privileged to meet Caleb earlier this year, when he traveled with his family to the National Institutes of Health in Bethesda. I last saw him in March, when he was here with his Mom and Dad. He is an amazing young man. Despite the tumor in his brain, you could not stop him – he just went on. I remember him getting up from the table, and go off towards his room at the Inn for something only to have his legs give out and collapse on the floor from the effects of anesthesia and the tumor. He just got himself up and went on. I remember how much he loved Lasagna, and Strawberry ice cream. I remember his creativity, watching him make bracelets and fused glass.
I marveled over his competitive spirit, watching him do battle in a miniature hockey game with another young patient at NIH. I must admit that I’ve never been a baseball fan, but I seem to have found a soft spot in my heart for it because of Caleb’s passion for it. And I will forever remember the gift of the hug he allowed me as Annette and I left NIH that night - in what would end up being the last time I saw him on this Earth.
Our DIPG journey has led us to many places. A strange paradox, it has given us many painful memories while also bringing us many blessings. Caleb and his family are one of those blessings. Thank you, Caleb, for reminding me to persevere in the face of adversity. Thank you for reminding me to refuse to abandon what you love just because life becomes difficult. Thanks for reminding me to act without being afraid. And thanks to all the Spady’s for showing us how powerful and beautiful a family’s love and witness can be.
Please keep Caleb’s family in your prayers. Specifically, prayers for comfort, wisdom, and peace in the days to come. If you would like to visit Caleb’s web site, and perhaps leave a note of encouragement to his family, you may do so here. Note you will have to create a CarePages ID but it’s easy, free, and worth it. You may also meet and learn about other children like Caleb over here.
Godspeed, young man. Until we see you again, we will miss you. Thank you for the gifts you left with us. And thank you, Lord, for sharing this brave young man and his family with all of us.
Wednesday, July 8, 2009
At times, I am reminded of how weird the world is that Annette and I now exist in. I mean how little the rest of the world understands about us. Those of you who have unfortunately lost a child know what I mean. I was reminded again of the unique painfulness of our world when an e-mail came across my desk at work - "Free Admission to the Baltimore Museum of Science!". Sounds fun, I like science. Upon reading further it explained - "Free Child Admission with Paying Adult." ZING ... and the feeling hit me in the gut like it usually does.
I successfully resisted the urge to reply to the note. The unsuspecting person who received the response would not have understood it, and, furthermore, I knew it is not nice to rebuke a well-intended gesture. But the fact remains - parents who've lost a child remain in a world much their own, and people outside the world can little understand what we go through daily. Don't misunderstand me - I appreciate and am sincerely grateful for well-intentioned empathy - but to truly "know" you must have walked the path. And I don't wish that on anyone. I'd frankly rather nobody else ever know! How I'd long to go back to July 4, 2006 - the source of the picture at the top of this page.
So I just hit "Delete."
Speaking of going back in time ... living back in my hometown has been quite an experience. As I drove to work on Monday, I passed the Junior High school which I attended. As I drove past the athletic field, I saw the batting cage and flashed back to April, 1984, when I had broken my left arm and couldn't play softball with my gym class. I saw the wood posts behind the batting cage (which keep the cars from driving onto the field) and thought, "I sat on those watching everyone else play!" Probably the same posts. Wow. What a flashback.
On Monday, God laid on my heart to do something spontaneous. So I took 1/2 day vacation, left at lunch, and went a bought a bicycle. I drove home, surprised Annette, and took her on a 14 mile bike ride through the VA countryside along the old Washington & Old Dominion Railroad right of way (now a bike trail). My Dad and I clocked many hundreds of miles on that trail when I was a kid. Annette & I had a great time, and a beautiful ride. The feeling has come back to our rear-ends, now, so we can go again! I think we've found something that we enjoy and we'll definitely keep it up.
This has been a particularly painful few weeks in the DIPG community as in the last 2 weeks, nine of our precious child warriors have gone home to the Lord. We will miss them and always will remember their valiant struggles in which they each proved that they are a hero in their own right. And because of our loving and faithful God, we know that we will see them again.
Friday, June 26, 2009
Oh, the treasures and gems we come across sometimes relating to our kids' lives. I found a file on the computer this evening called, "Caleb Quotes." It was dated 2/18/07 - a time when Caleb was doing quite well (post-radiation, before progression - normal kid). It contains just a few quotes, but they were funny. I thought I would share them.
“I’m sorry, I just don’t want people to get hurt on these!”
- Caleb, defending why he’s putting loose screws found in a drawer in his Dad’s den into ziplog bags, instead of getting dressed as he was asked to.
“Dad, I don’t see any reason to discuss this right now. Let’s wait until we get home.”
- Caleb’s response to his Dad, who was inquiring about which show a certain Disney song playing on the CD player belonged to.
“Dad, when we come here again, can you order Queso and then not eat it? That way if I run out of mine, there will be more.”Caleb, while at Taco Cabana, suggesting a method of Dieting to his Dad
Hope all is well with you.
Monday, June 22, 2009
Wow. A month has gone by ... we have been busy bees, for sure, and trying to enjoy life in our beautiful surroundings. It seems like we've been going nonstop for a month.
Our new home has a front porch which we are enjoying. Annette and I like to sit outside, usually when I come home from work, and watch the geese on the lake, the people outside, and enjoy the setting sun. As the spring has worn on, there are more and more kids riding their bikes around the paved path which lines the lake and which runs past our house. There are moms & dad's pushing the kids in the stroller. It does make us miss Caleb. I can just see him riding his John Deere around the lake! Or, his red bicycle. I do not doubt that Caleb lacks for nothing in his heavenly home, but I'd enjoy watching him pedal around the lake.
We have filled our last month with lots of things. One way to keep going is to stay busy and make the best of things.
After my last posting, my Dad came for a few days and we enjoyed catching up on things. On Saturday evening, we ventured into DC, to the Kennedy Center, and took in an italian opera. I'd never seen one. Dad is much more experienced in these things then I, and he explained it to me. It was REALLY neat, I do have to say. And the ambiance of the Kennedy Center during an evening performance is striking. Awesome.
Two weekends ago, Annette and I went horseback riding in the mountains near Staunton, VA. It was absolutely gorgeous. We did a 4-hour ride through the mountains, with great views, and ended up at the ranch we left from where we were treated to a cowboy supper of smoked chicken and all the trimmings. We headed down the road to a nice bed & breakfast in historic Staunton where we spend the evening. It was a really nice trip. We then headed to church in the morning (right next door - a beautiful Church in downtown Staunton) and then drove towards the house, stopping at a winery high up on top of a mountain to take a tour and do a tasting. We arrived home Sunday afternoon - what a great trip.
Then, between mid last week and the weekend, half of Annette's family came to the house! It was wonderful to visit with them. They spent a few days together doing stuff while I was at work, then I took Friday off and we visited the Smithsonian Air & Space Museum near Dulles Airport (not the one downtown). We saw the Enola Gay, the space shuttle Enterprise, and many other things. Highly recommend it if you're nearby or visiting.
Now, it's back at work for the week!
Father's Day was rather uneventful. Natashia and Christopher called which was really nice, and at least made it feel like a special day. I think Caleb's gift to me was peace ... I missed him, but I was at least at peace yesterday. Thanks son.
We're trying to find some time to visit Houston in the next month or two. It's high time for a good feast of Taco Cabana.
Happy Fathers' Day to all the Dads everywhere. To those Dads who have a saint in Heaven (Due to DIPG or otherwise), you were in my prayers in a special way yesterday. Until the day we see our children again, in the presence of God.
Saturday, May 16, 2009
OK, color me red ... I wrote an update on May 2, and never posted it! DUH. It is now included below ... sorry, I am not quite what I used to be.
Last week (around the 6th), I took a trip to Houston for business. Another one of these 36-hour sort of trips - in late Wednesday, out early Friday. It was for a one-day meeting on Thursday, but I got the chance to meet the kids for dinner at Olive Garden on Thursday night. That was nice - Natashia looks great and is doing fine, and Christopher is continuing to look like quite the young professional. I still remember when he was 9 and shut himself into his closet because he was made at us! I returned from Houston on Friday, and drove straight to Pennsylvania to spend the weekend in the Hills at the Malvern Retreat House. I had never been, and signed up for the retreat online sight unseen (after a Google search) because I really needed to get away for a weekend and refresh my relationship with God. Well, it was nothing short of awesome. I met a group of men who have been meeting for many years at this retreat house that has existed for nearly 100 years. These guys have been coming for anywhere from 5-40+ years ... every year ... so as you can see, there was quite an age range. It was nice. The grounds are beautiful, the meetings were great, and I met a few really neat people. I look forward to seeing them next year. While it was a good retreat, it was a hard retreat for me because I had some real spiritual issues to work through. I left feeling emotionally exhausted, but feeling like I got some good work done and very glad I made the trip. I know that God and Caleb called me there and I am grateful.
The retreat ended on Mother's day, and so I drove home to see Annette. It was a beautiful drive - I took the PA Turnpike west, and drove back home along Rte 15 through PA/MD/VA. Rte 15 is anywhere from a 2-4 lane road, depending on where you are and it is GORGEOUS. Lined with antique shops, wineries, small towns, big towns, beautiful mountain views, nice crossing over the Potomac River at Point of Rocks - and it was a beautiful, 70 degree blue-sky sunny day. I drove most of the way with the Sunroof open and enjoyed it. I arrived home to Annette and Natashia (who we surprised Annette with at BWI on Saturday, while I was at the retreat!) and we did a nice mom's day dinner at the RioGrande Cafe.
And two things I didn't get to write about yet - that actually happened before my last updates ...
Our ExxonMobil Fire Family continues to amaze us at their love for Caleb and how fondly they remember him. This year, the Fire Department created a "CALEB" award, which they present to a member each year who exemplifies the traits of the award: Commitment, Achievement, Leadership, Enthusiasm, Bravery (did you catch the acronym?). We were so honored and touched that they chose to name the award after Caleb Joshua. I know that Caleb is beaming ear-to-ear that they loved him enough to name something after him! He loved them so much, and I know he remains with them to watch over them. It's an impressive award - a large brass fire helmet (nearly life size) on a beautiful pedestal. Then, in an act I'm still trying to totally absorb - they presented one award to me. I am not often a loss for words - but let me tell you, add that time to the short list. I am, at once, touched, honored, thankful, and humbled. I am grateful to them for their belief in me, Caleb, and our family. And I am shocked because - honestly - I think Caleb was far more together, focused on the right things, and an impressive guy - then me. In many ways, I have learned from my son. And I'm grateful to him for teaching me. Did you ever see the Mel Gibson movie, "The Patriot" ? There's a scene in there, where in the midst of battle, Benjamin Martin (Gibson) finally dispatches the despicable Colonel Tavington (who killed two of his young sons). Tavington, initially believing he has the upper hand, taunts him with the statement, "Kill me before the war is over, will you? It appears that you are not the better man" Benjamin Martin responds: "You're right. My sons were better men." Boy do I understand that. Love you, son.
And, back up a few more weeks - early April - we returned to League City for the annual Relay for Life. This year, again, Caleb's school and some new friends from nearby Gilmore Elementary, teamed up to field a team in his honor. "Caleb's Fire Department." Some of our friends from LCVFD Station 1 came over, and we got to catch up and visit. It was truly magnificent. I confess I don't know how many people were on our team, but it was wonderful to see all the people who came to join us, to be on the team, and walk to defeat this terrible disease. I was also amazed at the kids from neighboring high schools who put teams on the field. How awesome.
I need to post some pictures - but need to find them, gather them, post them ... it'll take me a bit!
And I am trying to join the more modern world ... so (sit down) I now have a Twitter! Anyone who needs a little interest to their day (perhaps a very little interest!?) can follow my really exciting life! My tag is dad2caleb.
I hope that you are all well. Please continue to pray for all the warrior children who are battling DIPG, and their families that support them, love them, and fight along side them.
Saturday, May 2, 2009
Note - please excuse me; I wrote this update on May 2 and apparently I never uploaded it. Sorry!!! I posted it on Saturday, May 16th.
Hi everyone. I'm glad to report that Spring is definitely here! The trees have beautiful, sweet-smelling blossoms; a warm breeze has accompanied the afternoon sun of late, and it's now getting daylight by the time I reach the office. I love this time of year (hey, anything is better then 10 degrees!) It's been quite some number of years since we had a real "spring" - so this has been nice.
Can you indulge me a few minutes to talk about Brain Tumors?
May is Brain Tumor Awareness month -- so if you do a Google on "May Brain Tumor Awareness Month" you can find a lot. Sometimes, part of me thinks, "how can people not be aware of brain tumors??" But you know, that is in fact the case. Since that fateful September 21, 2006, not a day has gone by that our family has not been very aware of brain tumors, specifically pediatric brain tumors, and the devastating effects they have on families. But I think in this case, while people are aware of them, the are not necessarily aware .... aware in the sense of understanding how significantly they affect families, and how little is being spent on or devoted to eradicating and treating them in children. If you are reading this, chances are that you, too, are very aware.
So, for us who are "aware" - let's take May to help our friends, families, and elected officials to also become aware. While my prayer is that they never become quite as aware as we are, I do hope that they can be made to see that children suffer, families are in pain, and we are doing (relatively) little at a government level to influence it. I think our children are at least as important as saving General Motors ......
Last week, Annette and I were again blessed to spend time with Kim Spady and Sandy Smith - moms of two DIPG warriors, Caleb and Andrew (respectively) who are currently waging valiant battles. Kim and Sandy were here to attend an FDA hearing on the ethics of doing a biopsy of DIPG tumors in children. Kim hit the ball out of the park with her remarks to the panel - they were incredible. I know it sank in on some, but unfortunately, there is a lot more work to do. We were also privileged to meet Loice Swisher, a physician from Pennsylvania, who knows well the world of Brain Tumors as her daughter, Tori, has fought a different type of brain tumor (thankfully, she is now doing well as a teenager! Praise God!!). Loice spends much of her free time supporting families of children with cancer, and it was nice to meet her as well.
We have been privileged to meet so many wonderful children and families since September 2006. As I have remarked before, I'd have much preferred to meet them watching the kids play soccer, at church activities, or at the beach .... I would have never chosen the world of pediatric cancer. But, for some reason, God did choose this route, and in His time, I know that He will explain why. Until then, we remain grateful for this blessings of friends and faith, and the courage, example, and powerful witness of some special kids.
Sunday, April 12, 2009
Today, we celebrate the resurrection of the Lord. We celebrate His victory over sin, and over death. This is the victory into which Caleb Joshua was united on June 1, 2003, when he was baptized in the name of the Father, and of the Son, and of the Holy Spirit. And because God is faithful, we know just exactly where Caleb is right now. "Where, O death, is your victory? Where, O death, is your sting?" (1 Cor 15:55)
An awful monster named DIPG may have taken Caleb's earthly life, and taken him from our presence. But because of God's love for us, and Jesus' passion on the hill of Calvary, our faithful God has welcomed him to eternal life in His presence. "But thanks be to God who gives us the victory through our Lord Jesus Christ" (1 Cor 15:57).
In Caleb's final hour, I whispered to him that it was OK to go be with Jesus. For some reason, I felt he needed to know that. He died not long thereafter. I had a vision, which continues unchanged to this day, of Caleb walking along something resembling a dirt road, and coming to a gate. A low-profile stone wall, perhaps not much taller than he was, with a small wrought-iron gate. No huge, golden, pearly, amazing and imposing wall - a simple gate. The gate is open. There is a man on the other side, with a big smile. In a kind voice, He says, "Hello, Caleb." My video gift from Caleb ends there. Someday, because of our Lord's victory, I hope to see it myself and know the next scene.
Caleb, we miss you so much. But we are proud of your bravery, your faithfulness, and your powerful witness to so many - including us. Happy Easter, son. Don't forget to tell Jesus thank you.
Dying your destroyed our death; rising you restored our life. Lord Jesus, come in Glory.
Sunday, March 29, 2009
So if I'd have waited a few more days, I guess I could have said "Happy April!" But alas, I finally felt called to sit and jot a few notes about our lives over the last month - so I thought it best to sit down and write while the spirit moved me. We keep you all in our prayers each day, all of you who have loved and supported us these last few years of the journey. And it continues.
Last weekend, I made a very quick trip to Houston for a good friend's wedding. Now, to those of you whom I have now offended by not dropping by I should say I was there a scant 30 hours (~ 15 asleep!) and perhaps I can redeem myself with my next item ... so hang on :-) But, it provided the first outbound trip through BWI (airport) since Caleb, Annette, and I traveled back to Houston that fateful June 28, 2007 (see my entry of that date). It was a time warp after I cleared security and walked towards the gate area. Everything came rushing back ... the moving walkways (Again, Daddy!); the bathroom I took Caleb to many times; the Borders book store we shopped at; the McDonalds we ate at (I grabbed fries in Caleb's memory). It seemed odd to not have Caleb there. For a moment, it was like - "Wait - was it all a dream?" It looks the same. Just, Caleb is not running in front of me this time. God knew it was a tough trip and gave me the nicest set of flight attendants I've seen in a long time on the way down. I also did spend a few hours at Mt Olivet - just some time to reflect. It's a strange feeling being there, because I know Caleb is not there yet his body is there. But it's a place to go. I have always loved the words of Luke, "Why do you seek the living one among the dead?" (Lk 24:5). Amen. He is alive!
SO ... my next item ... we are returning to Houston for a few days this coming weekend. Our main purpose in returning is to participate in the 2009 Relay for Life, where Caleb's school has again assembled a team to both remember him and raise money to defeat this monster we call cancer. It brings joy to our hearts and tears to our eyes that his friends continue to honor him and fight against the disease which claimed his earthly life. Someday, we will win against this thing. We'd love any and all who would like to visit with us and walk for the cause to come to the League City SportsPlex Friday, April 3, at 7 PM. Hopefully this year, the relay will not be called for bad weather. We look forward to seeing our friends next weekend ... and our family, too! Yvonne and Jorge and the girls are coming, along with Caleb's true friend and supporter Haley, to participate in the relay. Can't wait until Friday!
This month, we were privileged to also get to spend some time with our friends the Smith's during their monthly trips to NIH. Andrew has been inpatient for some time, now, including during most of his trip here - so please keep him and his family in your prayers. He's fighting this thing with all he has, and keeping a great attitude. A fine young man. Here's his site, where you can keep up with this special guy. And our friends the Spady's also were here this month and we were fortunate to be able to have dinner with them. Unfortunately, we learned that Caleb's tumor has progressed since last month. Please keep him in your prayers as well, as he begins a new treatment regimen that we are praying will be effective. You can keep up with him here (you have to enter an e-mail & create a password for CarePages access, but that's easy enough). Yet another example of an amazing young man who maintains such a great attitude, and just keeps on going. Truly a special guy. I cannot tell you what an inspiration it is to see these kids, with all they are going through, and to observe the grace with which they live their lives. At once, a lesson for and encouragement for us all.
A few weeks ago, we were excited to host our good friends Denise and Rhonda! They came all the way from Texas to spend a week with us. It was great having them here. We walked all over DC, and the girls went to Williamsburg, VA for a few days. I'll have to post some pictures to the Flickr soon.
I have read three books this month written by fathers who have lost their children. It's amazing the similarities in the journeys we walk, the feelings we have, the events we deal with. Yet also, it's amazing the differences. Life After the Death of my Son, by Dennis Apple; Tracks of a Fellow Struggler, by John R Claypool; and A Grief Unveiled, by Gregory Floyd. The last book by Gregory Floyd hit me particularly hard - probably because of the similarity in the boys' ages and their personality similarities, as well as how much I could relate to him (Gregory). I read most of it on the way back from Houston and the two poor folks sitting next to me probably wondered about me during the ride home. Oh well.
I politely requested of God a chance to see Caleb the other night, and generously, he provided a nice dream about him. I do not typically dream about Caleb, so I was glad the request was answered so promptly and directly. Not an earth shattering dream, but the key features of the dream gave great comfort - Caleb was healthy. And he called for me, and I got a hug out of it. I love you, son.
Lastly, a new video of Caleb on our YouTube site. Enjoy it here. Annette located it while searching for some pictures this evening - I'd forgotten about it. Caleb reminiscing about his favorite Veggie Tales episode. It's a good one.
As I opened this evening, I mentioned the journey continues. Amen, it does - I do not know that we will ever fully arrive until the Lord calls us home. But we remain grateful that you continue to accompany and love us along this path. God bless you all.
Wednesday, March 4, 2009
Happy March! Thanks for checking up on us. I'm afraid I don't have that much to say this week -- strange, I know -- but there are a few things of interest.
I returned from a week in Paris, France on Friday. The trip was business, but I did manage to get away a few evenings and walk the streets of Paris, enjoy some good Parisian food (although it was italian three times!), and meet some really great folks. I also saw the Mona Lisa. Didn't get to the Eiffel Tower, maybe next time. It was fun to see Paris, but good to get home to Annette.
An interesting thing happened today. I drove over to the train station to go to work, and all three ticket machines were broken. One was physically powered off, and the other two were unresponsive to the touchscreen. Of course, it was 10 degrees outside, but that's neither here nor there - they were dead. You could buy a ticket for cash at the vendor stand, but I didn't have cash (who carries cash anymore?!). So, I walked back to the car, and drove to work. Weird. So, anyway, I called Annette from the office to check on her this morning. I told her about my commuting struggles and remember saying, "So, I guess we'll figure out why I was supposed to drive to work today!" Not 3 hours went by, at 12 noon - I get a phone call from an unrecognized number. I answer it and it's Annette - she has locked herself outside the house and is using a delivery truck driver's cell phone to call me! I had to drive home (nearly an hour) to let Annette inside because she was out in the freezing cold with no jacket. Thank you, Lord, for the broken ticket machine this morning. Not sure what we'd have done if I'd had no car (train runs in the morning, and the evening - but not in the middle). Funny how the Lord works sometimes.
Something else to be grateful for. Yesterday, we received word that our little friend, Andrew Smith, had improvement on his MRI scan!!!! Praise God!!! We were so excited and thankful for the good report. Please, keep Andrew and his family in your prayers. You can check up on him here.
With a thankful heart for some real miracles, hoping you're well.
Sunday, Februay 15, 2009
Hoping everyone had a great Valentine's day. Annette and I celebrated with dinner at Olive Garden, which we enjoyed after a 1-hour wait - guess everyone else had the same idea!
Although I usually give Annette a card on Valentine's day, this year, something interesting happened. I passed this big display of stickers at the end of the card aisle and thought "That might be neat." So I pasted them all over the card and envelope. Never done it in my life. After I finished it occurred to me that's exactly what Caleb used to do with the cards he gave to us. He pasted everything he could find on them! Thanks for the inspiriation son - it was really "our" card to Mommy wasn't it?
Had a nice run yesterday through downtown - although I discovered there is not really much of a shoulder on the 2-lane road through town where it crosses the creek. So I patiently waited for the cars to let up so I could go across - for some reason there were a lot of cars. Anyway, I was standing there for a minute and then all of a sudden ... ding, ding, ding! Down came the railroad arms and a train came through on the other side. The gates down across the road blocked the traffic and allowed me to run across the bridge leisurely. Thanks Caleb!
Have a good week.
Sunday, February 8, 2009
OK, so I know I'm not much in the habit of updating daily these days, but thought I'd share something interesting. You might remember my comments about how much peace I found in running since Caleb's passing, and how I loved the back roads / rural route I had seemed to have found right in the middle of League City. After we moved, I missed that. There are plenty of roads to run on, here, but it's either the subdivision roads or the main road heading towards civilization. Otherwise it's fields which aren't great on the ankles.
Annette and I have commented as we drove around the fringe of the neighborhood now and again about some trails we saw down the hill, but weren't sure what they were. I had a nagging feeling I couldn't shake today to go see what they are. As you know, I've come to realize that I just have to do those things when I get the nagging feelings because usually God is speaking. So, on went the running shoes and I launched into a sunny 65 degree day to figure it out - left Annette painting in the house, surely she wondered what on earth I was doing abandoning her!
I have discovered the battlefield which adjoins our subdivision. There is a nice (but unpaved) trail system running through it, and it's a nice run through the fields and woods. It's very peaceful. You can run right along the railroad tracks in places. I just did a quick 3 miles to survey what I found (plus I didn't want to leave Annette working by herself), but I know that God called me out there for a reason today. I shall return there - perhaps that will become a place of thought for me. Running on the battlefield? Who'd have thought it.
I found this online: "During the Civil War, Confederate forces suffered a bloody defeat at this site when they tried to cross Broad Run in pursuit of the Federal Third Corps. More than 200 soldiers from Alabama, Mississippi, North Carolina, Tennessee and Virginia are believed to have been buried in graves at Bristoe Station. Most of the gravesites are unmarked."
PS - sitting off in the distance is a handsome tractor. I didn't check it out, but will be sure to let you know if its a John Deere.
Saturday, February 7, 2009
Our lives in Virginia continue to unfold, and we continue to ask God to guide us to what he wants us to be doing.
We're settling into a routine, I think, now. And the more we settle in, the more I see so many fingerprints of God and Caleb on our lives here. It's really comforting - it's almost as if they mapped out something and dropped us into it. There aren't words to describe it, really.
Our home sits a thousand or so feet from the main railroad spur, and we are treated to many trains rumbling down the line during the day and night. At the moment, our view of the tracks is clear so we can see them (hopefully nobody builds something in our line of sight!) And since the tracks cross the main road just down from us, the trains are blowing their grade crossing (14L) signal as they go by. It's really a nice reminder of Caleb many times a day. How he loved that (and the bells) - remember our train ride we took? Here's a link to pictures if you've forgotten. Interestingly, now, my commute to work involves driving a mile down the road to a parking lot along those very tracks and hopping on board a train which takes me down near the office. And it's a train - no little urban light rail like we had in Houston! The big diesel train slowly rumbles in to the station, dinging the bell the whole way down the platform, and I am then treated to a 45 minute ride through the countryside with several grade crossings (and the wonderful14L signals) and so I usually sit near the engine to hear them well. I just know this was Caleb's gift to me. It's strangely peaceful. (PS - we learned a lot about trains because Caleb loved them so much. If you don't know what a 14L signal is, here's a video of a train blowing one! You can skip the first 40 sec of the video http://www.youtube.com/watch?v=QT98FHsrItc )
I've always had a home office - it makes me much more productive to have a separate space. In our old house, I used a bedroom upstairs which was fine - but it kept me kinda far from the action downstairs. Our new home has an office downstairs, just as I'd wanted, and Annette and I have been painting and adding some trim wood to make it a bit nicer. She's very good at that! So that's what we've been up to the last several weekends.
And also, over the last few weeks, we have had the opportunity to meet some very special families as they have travelled to NIH. People whom we've known from following their children's stories on their web pages, but never met personally. We were blessed to meet the Smith's a few weeks ago; their son Andrew has DIPG and is currently fighting (you can meet Andrew at his site, http://www.caringbridge.org/visit/aws). Please keep Andrew and his family in your prayers. They are special folks.
And, this past week, we were blessed to meet the Spady's; their son, Caleb, also has DIPG and is fighting (you can meet Caleb at his site, http://www.carepages.com/carepages/KeepingUpWithCaleb). Please, also, keep Caleb and all the Spady's in your prayers; another beautiful family.
I have always believed that God can use everything for his glory and our benefit. The world of DIPG has brought some amazing families into our lives; families whose friendships we are grateful for and who have blessed us by their presence in our lives. For that, I am grateful to God. But the human side of me cannot stop wishing for some other way to achieve it. I pray for wisdom, Lord.
As I close, one other thing to share: I was at work quite late a few Wednesday evenings ago, and it seemed like I was having one problem after another with the task I was trying to accomplish. In any case, it was just before 10:30 PM, and I was doing the final print on a document. I thought I'd better go check the printer to make sure everything was going OK. I walked down the hall, looked at the printer output tray and saw a beautifully stacked copy sitting in the tray - except for one page which was completely mangled and hanging out the side of the middle of the document, like someone had taken it out, ripped it, crumpled it, and stuck it back. Based on the condition of the page, I have no idea why it didn't jam the printer - it surely took a torturous path through the printer - but it didn't. Every other page behind it completed just fine. I pulled the mangled page out to check the page number so I could reprint it .... yup, you guessed it, page 13. A little encouragement from my computer buddy at 10:30 PM. Funny, Caleb.
I've created a flickr account to post some of our pictures. I've added those from our Ski trip in December. You can see it here -> http://www.flickr.com/photos/dad2caleb/
I also uploaded a video from our skiing trip to the Youtube site - check it out too! http://www.youtube.com/dad2caleb
As always, you are in our prayers. May God bless you all ... see you soon.
Sunday, January 18, 2009
Well, I've become reacquainted with what it means to be cold. As I left the house on Friday morning for work, the digital readout in the car said it was 10 F. It felt like it! On Saturday, I drove to Costco to pick up a few odds and ends and while I was pushing the shopping cart from the store to the car, I thought my hands were going to break off they were so cold. Been a long time since I remember cold like that. The lake in front of the house is frozen - really frozen. Brrr.
While I was doing errands yesterday, driving from the bank to Costco, I got stopped at the traffic light just a block or so down from the fire station. It's a long light, and I was focused on my next mission at Costco (read: my patience was wearing thin ... remember, something I need to work on!) As I sat waiting at the light, a fire engine rolled out of the station, lights and siren going full tilt, came speeding up behind all of us stopped at the light, then cut right and passed us all up in the right hand turn lane and headed through the intersection down towards Costco. My heart warmed as an image lept into my mind ... Caleb standing on the back of the fire engine as it sped through the intersection, in his bunker gear, waving back at me with a big grin: "Race ya Dad!" It gave me a nice smile to begin the day. Thank you, Lord (and PS - no fair, son!)
Now that we've passed the celebration of the Baptism of the Lord (well, a week ago!), I hauled the Christmas tree out to the curb for the fine sanitation folks to pick up tomorrow morning. It was a beautiful tree, and it seemed somehow wrong to leave it on the street. Annette took Christmas decor down over the last week, and the house has returned to a non-Christmas-decor state. You may remember from my ramblings last year that this is a sad time for me, as Christmas is a season of such joy - both spiritually, and, full of memories of Caleb Joshua and his love of the season. So, we await next Christmas.
I pray that your Christmas season was joyous.
Saturday, January 10, 2009
Happy 2009 to all. I hope your New Year's Celebration was festive, safe, and blessed. Annette and I visited with our neighbors for a little while, which was nice, and then we spent time at the Church in Praise & Worship, Mass, and finally, an hour in the hall with food and drink to ring in the new year. I met a few folks at the Church, and folks seem very nice.
Annette and I are getting used to life in Virginia. It's cold, no doubt, and very different then Texas. But we keep the fire lit most of the time, and stay warm.
Today we shopped at Costco. It reminds me of being at Sam's with Caleb, and I admit I felt the tugs at my heart as I watched the kids run through the aisles and enjoy a Coke with their parents at the Cafe'. I thought, "I miss you, son," and as I turned down the main aisle, a penny was on the floor staring up at me (Caleb sends them). Thanks, son.
I have said that I often reflect on Caleb's life, and it gives me a lot to think about. Something has been rattling around in my head for a while, now, and I'm not sure what to do with it - so I thought I'd write it down here. It has to do with Ordinary, and, Extraordinary.
So much of life is "ordinary" - right? We go through life, almost by routine, acknowledging but not necessarily taking special note of the things that pass us by each day. We wake up, shower, grab the morning coffee, and head out the door. We get stopped at the train crossing, curse our luck because we're late anyway, and ultimately get on to work. We interact with many people each day, handling the day's events. After the day's done, we stop at the store, shop for a few things, and head home for dinner. Or we might meet the family out and grab something out. We head home, catch some TV, read the e-mail, and head to bed - an "ordinary day." We've all done it. Many times, right? Nothing extra special about it.
Where is the "extraordinary?" So often I hear people say that life is routine, and there's something decidedly unsatisfying about that. I've been thinking alot that the extraordinary is lying right on top of the ordinary - we just rarely ever stop to see it. Are you catching my drift? Children seem to have a knack for finding the extraordinary in the ordinary. The child who repeatedly snaps the spring-loaded door stop until his parents get annoyed; the kids who hop on the $0.50 rides outside the supermarket and have fun whether or not their parents put money in them; opening and closing the garage door with the opener remote - again and again; making the automatic doors at the supermarket go open/closed/open/closed. Often times these activities are brushed off us adults, but somehow, someway, the child's attention has been captured. Something extraordinary has been seen. Now, lest you think I'm trying to drum up business for hardware stores or garage door repairmen, I'll say that I understand patience has a limit! But I think we also have something to learn from these kids.
Max Lucado, a well-known Christian author, said in one of his books that we often find what we seek. If we go looking for the ordinary, that's what we see. If we go looking for the extraordinary, we very often find it. I think he's right.
Caleb loved the ordinary, and treated it as the extraordinary. He saw things - everyday things - and wanted to stop and enjoy them. I've shared many of them - railroad crossings, how he loved to watch the arms come down as he made bell sounds! Tractor trailers - he wanted to count them all parked outside Sam's. Coffee at Starbucks - he loved to sit, drink our coffee (he had a 'blended creme' coffee), and enjoy life. The moving walkways at the airports - how many times did he want to go back and "do it again!" The escalator at Sears - "again, Daddy, again!" Sitting on the rockers in front of Buc-ees, drinking an icee. We couldn't just grab a drink and run - no, Caleb wanted to sit down, enjoy rocking, talk a while, and then we could go. He was never in a hurry. He took the time to enjoy life, one hour at a time, one day at a time. He always found something interesting about a person - his doctors, his teachers, his friends, our neighbors - that made him want to see them and talk to them. And he remembered it. Things that were ordinary, he treated as extraordinary. People who might've thought themselves ordinary, Caleb thought them extraordinary.
I often envision that God sees as Caleb seemed to see. We treat people, and sometimes life, as very ordinary. But I think God sees us as Extraordinary. To be cared for; to be cherished; to be enjoyed; to spend time with; not to be hurried with. To be treated as special, because, we are. Thanks for helping me see that, son.
I've often thought God has a conduit to children. Recently, a good friend of mine pointed out that God has a conduit to everyone - children just might be better at listening to it. I think he's right. This year, I'm going to try and slow down a bit and listen.
Monday, December 29, 2008
We're back! Nobody broke anything, which is a blessing in itself. We had a wonderful three days of making good memories, family time, learning some new skills in the snow, and enjoying the Snowshoe Resort in West Virginia. We also enjoyed the nice drives between our home and the West Virginia mountains, taking in some of the beautiful mountain landscapes. It's really magnificent to see the beauty God has created in nature. Wow.
As we approach January 1, we pray that 2009 may be a year of health, happiness, and success for all of you.
"Glory to God in the Highest, and Peace to His People on Earth." - Caleb
Thursday, December 25, 2008
A Very Merry Christmas from our family, to yours. As we celebrate the birth of our Lord, we remember all the blessings which we have received.
We are spending Christmas at our new home in Virginia; Natashia and Christopher have come up from Texas to spend the holiday with us. Tomorrow morning, bright and early, we leave for the mountains of West Virginia for 3 days to see if a family from Texas can do much with a pair of skis! Wish us luck, and please, do not tell us to "break a leg" because you never know! This is the first time we have ever attemped this ... :-)
May you enjoy a warm and wonderful day with your families. God bless you all.
Saturday, December 20, 2008
Dear Friends, OK - It's been less than a month! Getting better ... let me bring you up to date on what's going on with us.
We completed our move to Virginia, finishing up the drive from Florida to Virginia the weekend after Thanksgiving. After one night in a hotel, we closed on the house Monday, December 1st. Annette has done nothing but unpack, decorate, Christmas shop, etc. I literally left the closing table and went to the airport for a business trip and did not return home until last weekend. I spent two weeks between Brussels, Rome, and Sicily. It was a good trip from a business perspective but also a good trip from a personal perspective. One, I went to Europe (a first) and two, I was able to visit Vatican City and walk through the Sistine Chapel, St Peter's Basilica, and stand in St Peter's Square. I can't describe how incredible it was. But, after two weeks, I was ready to come home. So, my apologies for not updating - but I've been travelling.
Of course, Caleb's birthday was December 6. I was able to be at the Vatican to mark the occasion; Annette was able to attend a ceremony at the Post Office Pavilion (in DC) where a tree was lit in memory of children who had passed from cancer. It's interesting that both of those event were on Caleb's birthday ...
We've been having a hard time making it feel like Christmas. Annette has decorated a beautiful tree in the front room, put out our nativity set, and completed the kids' tree in the family room. That's helping to keep me in the Christmas "mood" - but I'll admit it's hard to catch the spirit this year. Caleb would have been 6 on earth this year, and I would have enjoyed watching him discover our new home and town and enjoy his wonderment at Christmas. He always could ask a question or make a comment that would really zero in on something - something you never noticed. And from his thought or question, you would have something new to think about that you'd never considered. And it was always neat. He was a wise kid. Far beyond his 4 years.
You know, Caleb had the right perspective. He knew what was important. I sometimes find myself thinking back over his life, what he said and did, to infer from those things what he might have said, done, or thought about something. Because, you know, I think he was a lot wiser than I. It really makes me wonder about the conduit which God has to his little ones here on earth - I think there is definitely something there. Maybe that's what Jesus was trying to tell us. And, as I've previously observed, after Caleb became ill, he really grew in this dimension. He became a very sage, contemplative, wise kid. While he was ill, one of Caleb's doctors remarked that Caleb "is one of those kids who clearly knows something that we don't." He did. And may we all someday be enlightened.
Praying that you and your families have a very blessed Christmas.
Wednesday, November 26,
Major changes have been a facet of life over the last few years, it seems. So here is another - we no longer live in Texas. League City, and Hunter Wood Dr, are now parts of our past. But so much happened there - good, and bad - that it will always be a part of our heart. We left behind some very special things in Texas - wonderful friends, an awesome part of our family, a faith community that sustained us through our toughest times - and Caleb Joshua's physical resting place. Because of that, part of our heart will always be in Texas. And I think it fair to say we will be back not infrequently. We now head forward to Bristow, VA, to see what the next chapter of our life holds.
Over the last year, I have caught myself relating everything to the date of Caleb's passing. I will think to myself, "Caleb was alive when I was last here." Or, "last time I did this, Caleb was with me." I always wondered about the "B.C." - Before Christ - I mean, I will attest that the birth of Christ was a pretty important event. But I always wondered about why time was marked in relation to it. I now understand. Completely. Because my life now has two chapters - before Caleb, and since Caleb.
But there is something else that reflection on that thought reveals - you will notice that there is no "After Christ". There is B.C. - before Christ - and A.D. - anno domini, or, "the year of the Lord." A firm testament to the fact that there is no "after Christ." Because Christ lives on - in a different place, OK - but He lives on. And you know what? Caleb, too - there is no "after Caleb." Once God created Caleb, his soul was eternal - and today, he lives on, in the choir of Saints who sing the praises of God each day. Praise God.
As I write, we are in Jacksonville, FL, enjoying Thanksgiving with another part of our family. And we have much to be thankful for. Our family and the many friends who sustained us are top of that list. How blessed are we.
I pray that you, and your families, are enjoying a peaceful and wonderful holiday.
Sunday, October 25, 2008
Yes, it's been almost two months since an update! But so very much has happened. However, there are lots of things to bring you up to date on ... let's start with the beginning of September, since that is where we left off, and we'll go from there.
Hurricane Ike. Got a direct hit! Of all the inconvenient times to get a hurricane strike (you'll understand in a minute), this one came right in the front door. We lost our fence, we lost shingles on the roof, and lost some of the tree. But compared to the folks in Galveston, and on Bolivar Peninsula (note - only 20 miles from us!), we were spared. Those folks lost everything. Please keep them in your prayers. Being close to the Police station, we got power back the next day, whereas some of the folks around Houston weeks without power. It was quite an event. Debris everywhere, boats in the road, in the trees, in piles in the parking lots; traffic lights at best broken and at worse totally gone (big backups); trees all over; fences everywhere; what a mess. I was a live-in at work and rode the storm out there; Annette and Natashia stayed in the house here. It was quite an event. But, as I said, we were very fortunate.
Some interesting things happened as a result of the storm ... neighbors met neighbors who they'd lived next to for 5 years and never met! People were helping people cut up trees, running extension cords where some had power and some didn't, and giving tips about where there was gas! But to me the most amazing thing was the kids. There was no electricity in many parts for a while - so no Wii's, Playstations, TV's, Internet, etc - and it was AWESOME! Kids were in the streets with crowds of kids playing stickball, kickball, and tag. Riding bikes, shooting hoops, and just talking. Usually the roads are desolate - everyone inside - but what a neat thing to see the world how it "used to be" ... thanks, Lord, for making small blessings come from larger tragedies. Hmmm .... have to think about that one for a while ...
Off we go ... And, immediately on the heels of the storm, I found out that I am getting a new job at work. It's exciting because it's truly a great opportunity, working with more great folks on some neat things. However - it is in Fairfax, VA, just outside Washington, DC. So, after 16 years in Texas, we are going east. It's bittersweet. As I said, it's a great job I'm looking forward to ... however, so very much has happened in Texas. So many of our best friends are right here, and of course, Caleb Joshua is buried here. So we will truly miss it. But, in one way or another, Annette and I feel that God is calling us to step out and take this job back east. So off we go. I've already been working some in Fairfax, and Annette has been feverishly getting the house ready to sell. I'm home in Houston for a few weeks, so now I can give her a hand. We already found a house in Virginia - and Caleb Joshua very much had a hand in it. The things that fell together for us to end up in this home were incredible. A subject for another update. But one thing to share now is that it's only 1200 feet from the railroad track, which is what Caleb would want. We'll be in Houston, physically, until just before Thanksgiving when we will leave. Our e-mails will continue to be the same, and I'll keep this web site updated as I have in the past.
Interestingly, I had a dream about Caleb the other night. Although I encounter him a lot, as I've said, it's extremely rare that he comes to me in dreams. I think it has happened only a few times since his passing. In any event, he was here, again! Annette and I were in a room, and it was like a huge party. Caleb was there. I remember being SO excited and happy to see him, as was Annette. I vividly remember wondering if I was dreaming, but concluding that no, this was too real to be a dream. I remember how overjoyed I was that we were together again. I've never been much into dream interpretation, but you know, it was like I got a glimpse of Heaven. Happiness, joy, and again - reunited. In God's presence. And someday, God willing, so it will be.
Hope you are doing well.
Sunday, August 30, 2008
So, those who have been reading my ramblings for some time know that after Caleb Joshua passed away, I took up running. As I have said, I have no idea why other then I felt some odd calling to. I have never been particularly physically active - so it was admittedly strange for me. But somehow, I was called to.
I never though that much of it - until this past week. This month's Runners World magazine features an article about an incredible young man named Ryan Hall who is quite a runner. You will recognize him as one of the US Olympians for the Marathon. Although he placed 10th in the competition, he set a record in the Olympic Trials for the marathon (averaging over 12 mph sustained pace!!), and holds the US record for the 1/2 marathon (Set in Houston!). The article really spoke to me because the central theme is his Christianity, and he talks a lot about his feeling that God called him to run --- it's a great article. You can see it here. I doubt I'll ever hit 5% of his running ability, but he sets a great spiritual target to aspire to.
I never really thought much about it maybe being God calling me to run - so this article got me thinking on a different track altogether. I have, in the past, reflected about how I seem to encounter Caleb Joshua as well as receive various spiritual revelations while on the run. Could it be that God called me to run?
Many remark how I never sit still. Even Annette says that - "you always have to be doing something." It's true. And I must admit, my prayer life is challenged because of this nature of mine .Could it be that the only time I "slow down" enough to really listen is when I'm running, and little else but me and the road exist? Maybe God knew the only way to get me "alone", to stop doing anything else, and get me to listen, was to call me onto the quiet roads in the early morning hours, with nothing but a pair of shoes, shorts, and a shirt?? And distance running is what I prefer, thus yielding a lot of "alone" time. I wonder if there is a plan at work here. God is rather clever, isn't he?
Long, straight Texas roads ... make for great running! Not much to distract me.
The tracks I cross, where Caleb sends a train rumbling down now and again to greet me.
So this past week, I was in Florida visiting my Dad. I hadn't seen him since Caleb's funeral, so it was time to drop in.
Caleb came along. As I was getting up to board the plane on the way there, I glanced at the seat next to me - and there lay a single penny (we've come to associate this with Caleb). But the most striking experience I had was when Dad and I visited Barnes & Noble on Friday morning. You may remember that Caleb and I frequented it often, and he had the same routine: he would search for a plastic stool, bring it to where I was reading, and climb up on it and proceed to remove books from the shelf one by one and stack them next to the stool. I'd let him do this for a while, then we'd put them back. It was what he did to stay busy, I guess. Well, I turned the corner onto an aisle hunting for a section, and here is what lay before me. I had to take a picture:
I was amazed. The collection of books was completely random, as Caleb would have done. I sat down on the stool for about 10 minutes, just marvelling at it. Nobody ever showed up. I left the scene as I found it ... awesome. Thank you, Lord!
Hope you are well ...
Wednesday, August 20, 2008
Well, I promised I would post pictures of the blessing of Caleb’s memorial – and, you’ve probably noticed that I still have not! Generally, the reason is because nobody has sent me any yet … but I am sure that we’ll get some, soon. So hang in there. As soon as I receive some, we’ll post them. (Hint … so if you have some, send them on! :-) )
Here’s another piece of incredible news: the monument company who put into life the vision we had for Caleb’s monument wants to feature it in a magazine read by their trade! We’ve given permission for them to use photos of it, as well as a paragraph we wrote describing it’s various meanings, in one of their trade magazines. How awesome is that!!!
So Annette and I were on our way to Church on Saturday evening. We were driving down SH-3, and approaching the point where the “new” NASA Parkway crosses SH-3 right before Magnolia. It’s right on the way to Frys, Taco Cabana, Barnes and Noble, and every other thing Caleb loved to go to – so we often passed this road under construction. Caleb really wanted to drive on it, but of course, we had to wait for its completion. It is newly finished, and opened, just in the last week or so – and so Annette and I were talking about how Caleb wanted to drive on it. I recalled, out loud, how disappointed he was that he couldn’t go on it. And then, it hit me.
Disappointed - (ds-pointd) – adj -- Thwarted in hope, desire, or expectation.
I shared, previously, that I have had a hard time with Caleb being gone. I (usually) don’t feel anger at God, or the circumstances, but there’s just a feeling in me that is negative and I can’t shake (other then the expected, “I miss him”). It feels very incongruent with gratitude to God (see my last posting!). But I couldn’t name it. Until now … I believe that it is simply disappointment.
Hope – I had such high hopes for Caleb on this earth! He was (is) so smart, witty, bright, and intelligent – I was so looking forward to watching him grow up and take on the world! I hoped for lots of days of soccer, bike riding, and Taco Cabana. I was waiting for the first phone call from a teacher, complaining because Caleb had said something unexpectedly adult and probably witty :-) I hoped to see him grow up, fall in love, and make his Mommy proud by how well he treated his wife.
Desire – I so wanted to enjoy Caleb’s growing up years, to take him camping, and teach him to drive someday. I really wanted to know his kids someday, take them for ice cream and sweets, spoil their dinner, and tell them what a nut their Dad was! I wanted to show them videos of Caleb playing doctor and singing to Alan Jackson.
Expectation – I had lots of those too. I expected to have many years to enjoy things with Caleb, things we just never got to do. Oh, how we tried to squeeze a lifetime of living into 10 months – but we just couldn’t get it all in. I never expected to have only 4 years, 7 months, and 28 days.
So, honestly – I think I’m just disappointed.
But, reflecting on my last posting, doesn’t God work out everything for the best? Yes, He does, so I’m left with the simple fact that I’m disappointed because my plan just wasn’t God’s plan. And I just have to trust that His is better.
You know, I remember how disappointed Caleb was once, when I wouldn’t take him to the Railroad Museum after he was ugly and rude to his Mom. But I knew that he needed to learn a lesson – it was for his greater good (note this was before he got sick!) But it sure killed me to see how sad Caleb was. After I told him we could not go that day, I can still see his eyes fill with tears, and then his running to his room, slamming the door, and burying his face in his bed crying. Ouch, it still hurts – 2 years later. I went into his room, held him, and told him that someday, he would understand. And that I loved him. And that next Saturday, if he was good, I would take him.
I wonder if God feels the same tugs at His heart when He sees our sadness and disappointment at things He knows are really for the better? Like my not taking Caleb to the Railroad Museum that Saturday morning was for the greater good? I wonder. How could a loving father not? But, like Caleb, I have to trust that I just don’t see it yet.
The funny thing is, now, the tables are turned. Today, I bet that Caleb understands why I did what I did 2 years ago. And today, from the streets of gold, he watches Annette & my eyes fill with tears, run to our room, and bury our face in the bed because of what God allowed to come to pass. And, like me that Saturday morning, I bet it hurts him – but I can just see him saying, “Someday, Daddy, you will understand. I love you.”
Amen. Someday, God willing, perhaps I will understand why things came to pass in this way. And until then, I will just have to trust. So be it.
With gratitude in my heart for a loving Father, I will await “next Saturday.”
Reading for the evening: Job 38-42.
Thank you, Lord.
Sunday, August 10, 2008
WOW! We had a very special time yesterday, as we had a blessing for Caleb's grave marker/memorial stone. Despite the amazing Texas heat, so many of our dearest friends, neighbors, and family came for the blessing. Father Albert had some wonderful words of blessing. Our dear friend and neighbor, Allan, had some wonderful words as well. And the release of balloons to the heavens, marked with messages for Caleb, was nothing short of awe inspiring. There are pictures - but I didn't take any as I was trying to be 'in the moment.' Our friends and family captured some - we'll work on getting copies over the next few weeks so we can share them with you all. Once we get them, we'll post them here.
Afterwards, we had a special gathering at the house complete with Taco Cabana! How blessed we were to enjoy the company of our dearest friends for a few hours while we ate Taco Cabana and shared fellowship. Thanks to everyone who came - we are so blessed by your friendship and love. THANK YOU! And special thanks to Taco Cabana. The Houston catering crew kind of let us down, but the corporate folks came through and had food driven all the way to our house from San Antonio!! And it arrived piping hot and fresh as if it came from a block away ... now that's dedication!
Isn't it interesting how God drops these "God Moments" into our lives, just when we need them the most? I liken them to Paul getting knocked to the ground by the bolt of lightning. I had one in my den/office today ... I noticed a book I'd not look at in a long time on the shelf, "Power in Praise" by Merlin Carothers. It's an old book. Anyway, I just flipped it open randomly and started to read ... here were the words I started with:
"Why can't our faith grow in pleasant, easy circumstances? It does, as we come to trust and rely more and more on God's promises. But the purifying, the testing of our faith, has to come through circumstances that are a challenge to our determination to believe, trust, rely on God's word, in spite of what our senses tell us. For so long, we've trusted our senses, our emotions, and our intellect to dictate our beliefs. We must be broken of that habit in order to exercise faith. So if God tells us he's working everything out for our good, and we see everything go wrong, our faith grows when we stand on God's Word and thank Him for everything that happens. How do you think Abraham's faith grew?"
I'll work on it.
Thank you, Lord.
Sunday, August 3, 2008
It has been one year. One year since that warm, sunny Friday afternoon that God gently called you home. I know that chronological matters such as this are probably of little import in Heaven, but here on earth, it represents a lot. What does it mean?
Well, for starters, it means that I have missed 365 bath-times with you. Do you remember how I would sing “It’s Caleb Joshua Time …” when I would be ready for your bath? You would look at Mommy, get that silly grin, and say “Let’s hide!” You would then proceed to crawl under the couch cushions. I miss that.
It also means that we have missed 52 “guy-store” days. I still do them, you know – something about Sam’s Club calls me there for a pretzel and coke every Saturday morning but I really have no idea why except it makes me think of you. I even put a shot of “red coke” in it, now and again, in memory of you. I still drive all the way to the back of the parking lot to count the tractor trailers, too – because I know you would want to. But it isn’t near the same without you.
We miss you, son.
But although I have missed your company this year – badly – I have been very grateful for everything that you have taught me this year. You left a lot of wisdom here, son. As I reflect upon everything you did and said while you were here, and think about the signs you have sent and visits you have made, I realize how much I have learned from you.
You taught me that the simple things in life are those which mean the most. A pretzel at Sam’s, tractor trailers in the parking lot, train crossings, fire trucks, the moon, rolling up the windows and singing at the top of your lungs in the car, a shiny John Deere – these things are replete with meaning for me now and I have never looked at any of them the same again since I knew you.
You taught me that bad stuff just happens – it’s nobody’s fault, and complaining about it doesn’t help. I think of all the times you were cut, poked, and irradiated. I think of all the times tape was pulled off you, sometimes in the middle of the night. Never once did you complain. Not ever. Never did you say “Why do I have to go to the doctor?” Never did you say, “why do I have a shunt in my head but nobody else does?” You just smiled, took it as it came, made the best of it, and left everyone who met you smiling. Boy, was that a lesson.
And last but not least, you taught me that the ultimate goal of this life is – and I quote you directly – is to be able to “love all over Jesus when I see him.” I still remember when you fell asleep in my arms, murmuring “Glory to God in the Highest and Peace to His People on Earth” until you were out. Caleb, I literally felt as if I was holding an angel. I realize now that I was.
So, son, we’ll all be thinking of you today (as we always do). Mommy and I remain so grateful to God for the privilege of being your earthly parents. And we await the day when, in God’s time, we shall all be together again.
We love you.
Thursday, July 31, 2008
Just a quick note -- we have a date and time for the blessing of Caleb's headstone! It's 5:00 PM on Saturday, August 9, at Mt Olivet. More to come, soon, with some details. Annette is also sending an e-mail. Hope you are all well.
Wednesday, July 23, 2008
Hi everyone, hope you are doing well. We're doing OK - getting through each day as best we can. Annette and I have both noticed we're feeling more of the sad emotions, recently. As I mentioned before, I'm still supremely confident in Caleb's whereabouts and give thanks for having the privilege of being his Dad - but I still miss the daylights out of him. I've given this a lot of thought, recently, and I think it comes down to the fact that we're approaching ONE YEAR - yes, one full year - without Caleb Joshua. All the firsts have gone ... Annette's first birthday without Caleb, the first Halloween, the first Thanksgiving, his first birthday, the first Christmas, the first Valentine's Day, Dad's first birthday without Caleb, the first Easter, the first July 4th ... and so on, and so on. There are no more firsts. They have all gone. The only one that remains is - the first anniversary of his ascension to eternal life. For those of you recall - it is coming right up - on August 3. Just 11 days away.
SO - that said, some exciting news to share! You will recall that I mentioned we were planning a very special headstone for Caleb? It has arrived! The awesome folks at Mt Olivet called and let us know it's here - so we had to go look. It's not placed yet, but we got to go see it. The pictures are here on the pictures page! Hopefully, it will be placed in time for the first anniversary of his passing. We plan to have a blessing ceremony - so come join us! Annette will probably e-mail everyone and let you know, and maybe even have a little gathering after --- more to come. If you definitely want us to make sure we tell you when, e-mail us. You can also tell us what you think of his memorial.
Two other things I need to share:
First, Judy. I wrote about Judy a few months ago, and I am REALLY happy to report that Judy has left the hospital and is now at home with her daughter! She is doing so well, praise God. It's so awesome!!
Second: Caleb's gift. On Father's day, I must admit, I said a bit of a selfish prayer and asked Caleb Joshua to come and visit me. I really wanted to "see" him, in whatever way he chose to reveal himself - but I really did expect to see him. I grew anxious as the day approached, but knew that somehow, someway, Caleb would make himself known. By the end of the day, I was quietly disappointed - because I did not encounter Caleb on Father's day. I figured that somehow, I just hadn't seen it. Well, on June 28th (2 weeks after Father's day), at 12:30 in the AM, Annette forwards me a note from a friend .... it was written on the Friday before Father's day, but it got lost in Annette's inbox :-) Well, here's what it said:
Ok you are going to think I am really weird but, I just have this overwhelming urge to tell you something. As I was typing that part about Caleb sending David special blessings I felt someone standing by the entrance of the room and I thought (my son) had come downstairs without me hearing him. Then when I hit send I heard footsteps running across the tile and wood floor towards my bedroom so I went to see what (he) was doing and he was still upstairs. I know that I did not know Caleb but, I feel like I just met him or sensed him or something. I sorry, you probably think I am nuts but, I really feel like it was him and he wanted his daddy to know he was going to be with him in his own way on Father's Day! Anyway have a great weekend!
Wow. That's all I can say about that .... but I felt better afterwards.
Hoping that you are all doing well. Please keep us in your prayers -- and thanks for all your love & support of us.
Tuesday, July 1, 2008
To all the wonderful people who continue to come here to read whatever ramblings I muster up, I just want to say - thanks. And, apologize, for being so sporadic about writing anything down anymore. The honest truth is that, recently, I've really been having a hard time with Caleb being gone. And I've not felt much like writing a lot recently. I know where Caleb Joshua is, and I'm grateful he comes and visits now and again. I am proud of him, the mission he had in his life, and remain grateful to God for the privilege of being Caleb's Dad. But, as time goes on, I miss his physical presence more and more. I pray each day for peace, wisdom, and understanding.
Father's Day came and went, and I celebrated it as I would have if Caleb were here. We started the day with morning Mass; then went to Sam's Club for pretzel & coke, and to Taco Cabana for a nice lunch. I think I went to Fry's that afternoon, as well, to top it off. Caleb would have loved doing those things with us. It was all his favorite stuff.
I do want to share the amazing (but late!) Father's day gift I received from Caleb. But, more on that next time - it's late. I promise I'll put something down before another month goes by :-)
Hoping you all are well - and God is blessing you richly.
Sunday, June 2, 2008
How time flies ... tomorrow, it will be 10 months since Caleb Joshua went home to Heaven. While in some respects it doesn't seem that long, in others, it sure does. By my calculations, we have missed 44 trips to Sam's, probably 50-60 trips to Taco Cabana, and untold Fry's trips. Caleb hasn't been sitting idle, however ... in fact, he is very engaged in the Lord's work. There are a few things I would like to share. This will take a bit of explanation, but it's worth it. So here goes.
We have been very blessed in recent years to know a dear friend, Judy. Judy goes to church with us, and one time, she performed an act of kindness to Caleb Joshua that he never forgot. In short, she brought him a cookie (during church!). Caleb was acting up a bit during Church (CALEB ?!) and I told him if he was quiet, I'd find him a cookie after mass. Judy overheard this (she was sitting in the pew directly ahead) and since Caleb settled down nicely, she went and got him a cookie before mass ended! Caleb was so grateful for that cookie. He never forgot that.
Unfortunately, a few months ago, Judy was diagnosed with Lung Cancer and for the last 6 weeks or so, she has been hospitalized. While we never know the Lord's plans, it appears He will call for her sometime soon. She is surrounded by a crowd of friends and relatives, true to the well-loved woman she is.
Judy had a special message for us a couple weeks ago. She revealed to us that Caleb has been visiting her. She says he doesn't usually speak - he just "Flutters" (she calls it) - and smiles a lot (that's Caleb alright). She says she gets the impression that speaking isn't what he prefers. But this one time, she told us, he spoke to her. And he told her to "tell my Mom that I'm fine" ... and that he knows she loves him ... and that he is going to "help her (Judy) get out of there." WOW. This was what I alluded to in my last posting ... but I had to get the details from Judy herself.
As we were on the way to the hospital to see Judy on Friday night, I stepped out of the den and headed down the stairs. Caleb's room is right across from the den, and it's pretty much as he left it. On one wall are two posters that his preschool class made him when he was in Texas Children's hospital right after diagnosis. One of the posters ... a heavy posterboard ... had fallen off the wall (?) - first time ever - and sailed a good distance through the air to come to rest at the threshold of Caleb's doorway oriented so that as you stood at the door it was perfectly poised for you to read it. On the posterboard, amidst the handprints of his classmates, was the worded message ... "We love you, and we miss you."
We miss you too, son, and we love you.
Thank you, Lord, for reminding us that you are in our midst, and that your angels are at work among us. And thank you for the gift of Judy.
Friday, May 9, 2008
Happy May, friends and family! This weekend is Mother's day, of course, and I ask everyone to keep in their prayers all Mothers, everywhere, for the wonderful grace they infuse into our families.
Annette and I took a much needed respite from the world, today, and journeyed to old-town Spring, Texas. It's about an hour north of here, and it's a town full of shops, antiques, and just a fun and special place for us. We haven't gone there since before Caleb was diagnosed. So, we took the day and left League City behind. Enjoyed a fantastic lunch at Wunsche Bros (I go only for the Chicken Fried Steak plate with Mashed Potatoes & Green Beans), and did a bunch of shopping. Met a bunch of nice people who own small shops. Only bought a handful of stuff, though. But we really enjoyed it. Found a store with a great stash of John Deere goods - so I bought a frame in which I'll place on of Caleb's great John Deere shots. It'll be awesome. Spring is also right on the main Union Pacific train track line, so there's always something going by - which, as you know, is also something we associate with Caleb. So it adds emotional value.
Caleb is on our thoughts very much these days, particularly as the summer is here now and we miss playing with him out front. Oh, Caleb Joshua, how we would love to watch you playing in the abundant light and walking the streets of gold right now ... in God's own time, we pray, we will.
I'll post another update later this weekend - we have something else to share - but I have to get the details right! I also will try to put some pictures up this weekend in the Gallery of Relay for Life, etc.
Hoping you all are healthy, happy, and well ...
Sunday, April 27, 2008
The weekend's over - and it was truly a blessed one.
The Relay for Life. Caleb's team had a great showing! Lots of awesome people came to support our team. Yvonne and the girls came from San Antonio, and brought their friend Haley with them - it was wonderful seeing them all. As the Star Spangled Banner was played, I could see - through the people, and the tents - sitting in front of the pavilion - the large "E-13" reflecting from the side on the wonderful engine that carried Caleb Joshua to his place of rest. Jason, Carlos, and Katie from the League City Fire Dept brought Engine 13 over to join the RFL activities for a little while. What a blessing to us all. Unfortunately, in replay of last year's relay, the night was called off at 2 AM when severe storms moved into the area. And we were still going strong - we'd have made it! We got in lots of good laps, ate some good food (probably not so good for us!), had some great conversations, remembered our loved ones, had a moving luminary - I could go on. Oh well, all things for a reason, and we enjoyed what time we had.
The weather kind of continued that tone for the weekend, so we didn't do much outside - but we had some good game times, a nice bbq, and visiting with our out-of-town family.
I have something new to think about. I continue to reflect on the ways in which God accomplished amazing things through Caleb Joshua. Over the weekend, I played on the iPod a few times the song by Phillips Craig & Dean, "I want to be Just Like You." If you've never heard it, take a listen. Every father should listen to that song. I first heard it on our ACTS retreat in July of '05, and it became a powerful Gospel to me. One particular line - "Let me be a living bible, Lord, that my little boy can read ..." has always stuck with me. It finally occurred to me, this evening, that the reverse happened. God turned Caleb Joshua into a living bible that his daddy could read. I've always thought I knew a lot about my faith. I've taught our faith to youth and adults alike. But, after the last year, I realize I knew nothing. God taught me so much through Caleb's life, his illness, and his death. I almost feel guilty saying I have "faith" because really, I don't. Faith implies belief in what has not been seen --- but I have seen with my own eyes, so clearly, the miracles in Caleb that there's little left to trust. I can relate to Thomas who had to be shown to believe. Thank you, Caleb, for showing Daddy. Thank you for being a "living bible" to Daddy. I continue to think of you each day, son, and about the lessons you showed me. I'm forever grateful.
But you know, I really miss you, too. I'd give a lot to have you sit in the cart at Sam's again and get mad at me for eating too much of the soft pretzel and for not putting in enough of the "Red" Coke into our drink. You are awesome.
As I said, now I have something new to think about. I feel called to make a list of the things I learned from Caleb's life. Perhaps some day, that will become clear.
Thanks again for checking in on us, and, for your ongoing prayers for us. Peace to you, and, good night.
Sunday, April 20, 2008
It has officially been a month - and three days - since I've posted anything. I'm sorry about that. And I know I keep apologizing for taking so long between updates on us, so here's another one. But much has happened with us, so I thought I would share a few things.
First - Relay for Life - the Baytown Relay for Life was a huge success, raising over $800,000! It's one of the largest RFL's in the nation I understand. The ExxonMobil Emergency Response Teams relayed in Caleb's honor, and what an honor it was. His name occupied a spot on the team shirt next to Chief Huron. We spent several hours, and walked some laps. It was moving for us.
This coming Friday is the Bay Area Relay for Life, where Caleb's Team - sponsored by his wonderful friends at Creative Corners, joined by many others - will walk the track all night. We plan to also attend that event and support the team's efforts! Caleb's Aunt Yvonne, cousins Marissa and Julianna, and hopefully Uncle Jorge will come and relay with us on Friday. We're so excited that they are coming!
Those of you who know me well are aware that since Caleb passed away, I've taken up running. I don't really know why - in a strange way, I felt "called" to. Does that make sense? It doesn't to me ... it's never interested me in the slightest, and I could run all of 60 seconds before having to stop! But, I've been working on it since last August, and back in January, I reached a personal goal of running 10 miles nonstop. So, on the weekends, I go out for a long run. It is typically during those long runs, these days, that Caleb draws near. Maybe it's because I have time to be alone with my thoughts, maybe I'm running too hard and I'm oxygen deprived (:-)), who knows - or, maybe, it's Caleb's choice of venue and that's why I felt some odd calling to be a runner? No telling. But the times when I'm closest to Caleb are when I'm running. This past Saturday, I did a 7 mile loop through town and as usual, my thoughts turned to Caleb Joshua and his uniqueness. And as I looked down, I passed an unopened - no joke - 4-piece king sized Reeses Peanut Butter Cup package laying by the side of the road. Caleb's favorite. It was awesome. When I was out on the main drag (FM 518), on the nice new wide sidewalk, I passed a young boy (~ 13?) walking down the road dressed quite nicely. As I ran past him, I just smiled and he beamed back the most peaceful and kind smile I've seen -- no words spoken -- just a warm, affirming smile. It was a strong reminder of another incident Caleb & I together had at Taco Cabana last summer before he passed away -- it's linked here on my October 27 entry. And, as I was returning home running down Hewitt St towards the railroad tracks, a long - and I mean long- train rumbled down the tracks whistle blaring. I had to wait for it to pass before I could lumber across the tracks back towards the house. I can just see Caleb laughing his head off at making Daddy wait there while this train went past. That hasn't ever happened before. So, it was a nice run and I just hope and pray that Caleb keeps dropping Caleb reminders to me ... they're very peaceful. It's hard to explain.
Annette and I go on ... and remain so very grateful for your prayers. More YouTube videos coming - I promise.
Monday, March 17, 2008
Happy St Patrick's Day! Sorry, again, for taking a few weeks to post an update - honestly, I haven't felt like saying much. But there are definitely things happening. First, I've added some new videos to Caleb's YouTube site. ( Here's a link). Two - one very short one, of him trying on his fireman helmet for the first time. This is the real, somewhat heavy helmet the ExxonMobil Fire Team gave him - and he puts it on, gets a pleased look, and starts to tumble backwards from the weight!!! The video ends abruptly as I catch him :-) The other video is Caleb, very proud, discussing his fireman suit with me. I honestly didn't remember I had that video, and I came across it yesterday. Wow, what a treasure! I'll add more soon. Although not the cheeriest, I want to add the picture shows from his funeral - they are moving.
AND --- again, this year, Caleb has inspired two Relay for Life teams! His friends from Mothers Day Out have started a "Caleb's Team" for the Clear-Lake area Relay. And, the ExxonMobil Emergency Response Teams are dedicating their relay this year to their brother Caleb, and their late Chief, Harold Huron, who also passed away from cancer a few years ago. What a honor for Caleb, and us. You touched a lot of people, son. We remember you. And we fight against the disease which harmed you. Someday, Lord willing, we will defeat this monster. We'll post links to the RFL pages shortly so you can be a part of you'd like to.
Hoping you are well - God Bless You all.
Monday, February 25, 2008
Howdy everyone! Sorry it's been a few weeks. I was in Phoenix, AZ, this past week for business and it's been a while since I've been able to hop on to write an update. SO ... I should tell you some interesting things about the Phoenix trip.
This is the first time since Caleb, Annette, and I flew to Washington for Caleb's last trip to NIH last June that I've flown out of Hobby Airport on Southwest Airlines without Caleb. So, I was a bit sad. It made me think of when Caleb & I traveled to my Dad's house - in fact, I carried this picture with me on the trip.
Annette took it as Caleb and I prepared to leave for Florida - he was SO excited. It was only a month before we found out about the tumor.
So, anyway, I asked Caleb think about coming along with me on the trip or at least visiting me now and again. In his usual way, he did!
First - our flight crew to Phoenix was GREAT. In order to accommodate a couple (not sure why, I didn't ask) they asked me if I would be willing to move. I didn't care, all the seats when to Phoenix and it was just me, so I said sure. They directed me to a seat in ... guess where ... Row 13. 13 is an interesting number to do with Caleb - strangely enough. For example: he rode in ExxonMobil Team 13's fire engine in October '06; he was carried to Mt Olivet Cemetery aboard League City Engine 13; there were 13 firefighters at his funeral, and they were seated under the 13th Station of the Cross in the church. (Caleb's friend, Captain Byrd, pointed this out to me). So, I've come to associate that with Caleb. So, me getting put in Row 13 was a bit interesting. But that's not all.
So, when I arrive in Phoenix, I'm missing Caleb being with me. I turn off the Interstate and onto the road that leads to the campus - and there it is, on the left as large as life, "FRY'S ELECTRONICS." There are 34 Fry's stores in the entire United States of America! What are the odds? So now I'm feeling good. I turn the corner onto the entrance road, and right on the corner - "Einstein's Bagel Bakery" (Caleb's 2nd favorite food). And then, right on campus, "Starbucks Coffee". By now, this had Caleb written all over it. I've never seen another Einstein's other than the one Caleb and I go to in Houston (OK, I'm sure there are LOTS but I've just never seen one - except this one).
So, son, thanks for coming along. We had fun didn't we!
I'll write again soon. Hope all are well.
Sunday, February 10, 2008
Hi Everyone - there's not a whole lot of new things going on here. We are missing Caleb very much these days - now that summer seems on its way back now, the days are warmer, and we are thinking of everything we would be doing with Caleb. Son, I know you are doing all that and so much more then we could ever know - but we still wish we had you here on earth to enjoy the simple earthly things. We are glad to know that someday, in God's time, we'll all do those things together again.
Annette & I went grocery shopping today - but realized 1 aisle into it that we were far too hungry to shop! So we went across the street to Taco Cabana, had a meal and reminisced about Caleb, and then got back to the task at hand.
Thanks for looking at Caleb's videos! His "singing" video has gotten almost 200 views. There are three Caleb videos up so far - more to come. His "5-O'Clock Somewhere" video; his "Look Out Fixin' to Burp" video; and his "Gonna Have an Accident" video. Hope you enjoy them. Here's a link to his videos.
Of course, this past Wednesday was Ash Wednesday, which marks the beginning of the wonderful season of Lent. May your Lenten journey be spiritually fulfilling and blessed. Have a good week!
Saturday, February 2, 2008
February, already. Tomorrow is the six-month anniversary of Caleb's ascension to eternal life - and, of course, his earthly departure from us. I miss you, son.
I finally took the Christmas lights down off the house last weekend. It was a bit sad because Caleb wasn't there to help me, and by taking the lights down, I'm officially admitting the season is over.
While pulling down the lights, I collect the staples into my pocket as I go. So, by the end of the job, I have a pretty good pocket full of staples. As I was removing them to the trash pail, I felt something in my pocket like paper. I pulled it out, and alas, it was paper. Unfolding the crunched up ball, dirtied with the grime from the weathered staples, revealed a most precious item - a Taco Cabana receipt from March 17, 2007. This was probably the last time Caleb and I went to Taco Cabana before he began his significant downturn in March. I plan to preserve it. And thanks, Caleb, for reminding me that you were there with me. (But next time maybe you can pull some staples out, too, and help me!!!!) And by the way - this was the pocket of my jeans - not like a winter coat or something thrown on only a handful of times a year - how many times have those been through the wash? Another visit from Caleb I think.
Here's another gift Caleb left us that you might enjoy watching -> http://www.youtube.com/watch?v=9i_wyXh-lbQ. What's special about this video, that made me take it, is that this was one of the first days after Caleb's diagnosis that he woke up really perky, lively, and full of life! It was in November, 2006 - about 6 weeks after his diagnosis. It is so Caleb. This is who he was! This was the beginning of the time when the radiation checked the tumor strongly enough that, other then the steroids weight, you didn't know Caleb was sick. I'll try to post some more.
And by the way -- I know I've mentioned it before -- but just in case: our Cable Company left town, and took our former e-mail addresses with them. They were nice enough to forward them for awhile, but as of 12/31/07, no more. So, if you are still using the "@houston.rr.com" e-mail addresses, they won't get to us anymore. Please use either email@example.com or firstname.lastname@example.org. These won't ever change, because, we own them!
Sorry that there's not much more to say this week - but I at least wanted to share the lights story and tell you that we continue to think of all our friends, and marvel over how much you have loved us and supported us. Hoping that all is well with you.
May your team be victorious tomorrow!
Tuesday, January 22, 2008
Happy New Year! No, nothing is wrong with the web server ... it's been on my heart for a while now to return the above Caleb banner to it's rightful place. As many of you will remember, this is the banner that adorned Caleb's update page until, well, you know. It has really been on my heart to put it back - maybe Caleb likes it better - and so, I'm going where I'm led. It's back! Hope you enjoy it.
Sorry for once again waiting 3 weeks to write anything. My forecast in early December that "in a week thing will be back to normal" was a bit off ... just last week, we were able to move back into our den and set the computer up again (recall a water leak in the adjacent bathroom had the bathroom & den torn apart for over a month ... ). Updates were just so entailed from a remote computer. But life is getting back to "normal" again.
Not a day goes by that we do not think about - and miss terribly - Caleb Joshua. We know where he is, heavens knows that's true. But we do so miss him, everything about him. His gut-splitting laughter. His sense of humor. His ability to find the extraordinary in the ordinary. His love of everyone. His sweet voice. The baby powder plumes rocketing up from his bed after the bath (when he'd squeeze the bottle) and the ensuing laughter. His love for Jesus' Blessed mother, Mary. And, how you just looked into his eyes and could almost see the Lord looking back at you. You truly made one-of-a-kind in Caleb, Lord. I can't blame you for wanting him back. We are forever grateful that you chose us to have the privilege of caring for him during his years here on earth.
What's up with us? Annette has done her part - Christmas is down inside. However, outside, the lights are still hung from the gutters with care knowing full well that St Nicholas was already there! The light-up deer look so majestic out on the lawn .. although we did unplug them finally. Next weekend, I'll take it down. There's a part of me that will be sad about that - Caleb loved Christmas so.
Add another first: last weekend, I changed the oil in the car for the first time without Caleb. Last change was in July (it's OK ... it's synthetic!). That was when Caleb was starting to deteriorate - he had to sit in his Prince's chair at the front of the car while I did the work. But he was very engaged in what was going on. After the job was done, I went to get a tool out of the garage and walked across the front lawn --- and tripped over a potted plant Annette had in the front yard in a wire hanging basket (yes, it was on the ground). The loop in my tennis shoe lace caught on the wire and I went flying headfirst across the yard with the plant sailing over my head (from my leg trying to kick free), landing on the sidewalk, and the dirt exploded everywhere. (I was fine - thanks for asking - embarrassed, but fine). Caleb about fell out of his chair LAUGHING so hard!! He laughed for what must have been a solid hour. Later on, when Annette would say, "Caleb, did Daddy trip over the plant?" he would resume the same gut-splitting laughter. I'd say, "Caleb, it's NOT funny!" and he'd laugh even harder. Oh, how I miss it.
We are now on Revision 3 of Caleb's headstone plans. After Rev 2, we realized we forgot something ... so our good friend Lynn at Mount Olivet is working up another version! Hopefully, we'll be able to approve it soon and get moving on the construction phase. At this rate, we'll be lucky to have it placed by Caleb's 6th birthday. But it will be AWESOME! Caleb will be very proud of it.
Many of you have told us that you continue to hold us in your prayers - and we continue to be so very grateful. It's only by the grace and strength of God alone that we rise each day and face the world. Many thanks for your prayers on our behalf. May 2008 be a year of joy for us all ...
Monday, December 31, 2007
It's the last day of 2007 - and what a year has this been. It was full of our greatest sorrows, but yet, it also contained many of our greatest blessings. It's quite an odd dichotomy to process internally. But on the whole, we finish up 2007 grateful to God for the wisdom, blessings, and love He bestowed on us. And, we finish up 2007 grateful to all our friends and family who literally carried us during some of our hardest times. How blessed we are.
Our Christmas in San Antonio was nice, and peaceful. We really enjoyed the time with our family, and although Caleb was badly missed, his spirit was clearly with us. Especially during midnight mass - I just know he was there. Only one thing to share - since Caleb was really little, he has had this thing about the moon. We called the moon, "Mr Moon" to personify it and from the time before he could really talk, Caleb could point at the moon. When Caleb was not even 1, first thing in the morning, I'd pull him in the wagon across the street to where Annette was watching our neighbor's girls as I headed off to work - and Caleb would invariably scan the sky, find the moon, and point. So, the moon has always been something I associated with Caleb. On the way home on Christmas Day (had to work Wednesday!), while driving down I-10 midway between San Antonio & Houston, the moon rose out of the eastern sky and sat on the roadway on the horizon. It was positively HUGE, and just sat out there almost as a target for me to drive at. What a beautiful sight. Not sure if it was a Christmas greeting from our angel but it definitely made me think of him and was good company for us on the trip home.
Another interesting point - you might recall from a few months ago, I'd shared our Buc-ees story. There's a Buc-ees at the intersection of I-10 and Hwy 183 in Luling, and Caleb just loved to stop there and buy an icee. They had a bunch of wooden rocking chairs and benches on the front porch (for sale) and Caleb loved to sit on them with us and just sip the icees and talk. It was one of our special moments. The first trip out to San Antonio after his passing, we swung through Buc-ees for memory sake and the benches/chairs/rockers were all gone. The porch was completely clear. For the first time since the place was built, there was nothing on the porch. Almost as if it was just there for him! Well, they're still gone ...
So tonight we'll ring in the new year. May this be a year of peace and joy. And may this be the year that a cure for DIPG is found.
We pray that 2008 brings many blessings to you and your family. Happy New Year!
Saturday, December 22, 2007
Last weekend, I went down to Mt Olivet to remove the beautiful wooden birthday cake that had adorned Caleb's grave all week. While the weather had taken its toll on the balloons, all else - including the notes left for him - were in great shape! They have sodded his grave, now, so it looks much more pleasing and the foundation has been laid for his stone. That will be ~ 6 months out, yet, but it's nice to see some progress. It was a very gray and rainy morning in Houston, so my visit with Caleb was under very cloudy and gray skies. As I said goodbye to him, I asked him to come see me soon - I miss him. I picked up the birthday cake, and turned to walk towards the car. At that moment, in front of me, the clouds parted and the beautiful sun shone down and bathed the altar circle and the part of the cemetery with Caleb's grave in beautiful warm light.
"Hi, Daddy." Hello, son. And thanks.
So, it's now 3 days before we celebrate the birth of our Lord. Christmas will be very different this year, for several reasons. The most obvious, of course, is that Caleb is not with us here on earth to Celebrate for the first time in 5 years. We will miss him, indeed. He just loved Christmas - the decorations, the presents, the treats, and the family. And of course, we loved to see his excitement, his wonder, the expression as he came downstairs to see what Santa left - I will treasure those forever. And I miss them. The other reason is that Christmas has taken on a totally different feel this year. No, not because it's 80 degrees outside and I was hanging Christmas lights in shorts and a t-shirt. But, you see, I, like Caleb, have always enjoyed the decorations, the family, the warmth of Christmas. And while all those things are here this year, it's very different. While Christmas will still be about family and warmth, for me, the meaning has taken on a totally new dimension. Christmas to me now is so much more about God and his faithfulness, that led him to send His own son into the world that we might all have eternal life. I see the child Jesus, born into a family, whose entire life had a very clear and strong purpose which he accomplished well. By his life and death, many came to know God and believe. We were saved, by a child, a gift of God, called Emmanuel. "God with us." Amen. Praise God. Thank you, God, for the gift you gave us in Jesus.
And Thank You, God, for the gift you gave us in Caleb Joshua.
May your Christmas be special, and may the gift of the child - Emmanuel, God with Us - be your most treasured gift. Merry Christmas.
Thursday, December 6, 2007
Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Caleb, Happy Birthday to you! (And your cousin Marissa would add, "you look like a monkey and you smell like one, too!")
Happy Birthday, son! It was 5 years ago today that you came into the world and made your Mommy and I the happiest people that ever were. Little did we know where we would be 5 years later.
The day had a very nice start. Annette woke up at 2:10 AM (Caleb was born @ 2:06 AM). She came downstairs, and sat in the family room for a while. As she was sitting there, Caleb's fire engine (in his toy cabinet) turned on its lights and siren ... all by itself! Then, it did it again! It then grew silent, as it has been since Caleb's passing. That was nice, son - you knew your Mommy needed you to drop in on her.
What a day it was - THANK YOU to everyone who helped us remember Caleb, and who helped keep us together. Thanks to those who came by the house to give us a hug today; thanks to those who left balloons out front; thanks for the pennies which adorned our sidewalk at 5:30 AM this morning! Thank you for those who sent us flowers, for those who sent cards, and e-mails, and we love the big wooden birthday cake on Caleb's grave from the Dobsons. Thank you to those who visited his grave, who left notes, toys, and balloons. Thank you all -- as I've said before, we are so grateful for how you take care of us. God does so much to lift us up through you. Thanks.
We had a nice dinner at Taco Cabana this evening. I know Caleb would have enjoyed that. But, now, he has all the Taco Cabana he could ever hope to eat. Where the chips are forever red, and the queso never runs out.
So, son, Happy Birthday. We're proud of you. We give thanks to God for the gift of YOU, and, for the wonderfully awesome people who have come into our lives. We are so blessed.
Sunday, December 2, 2007
This will be one of our harder weeks since Caleb passed away, as he would have been 5 on Thursday. December 6, 2002 - one of the most joyful days of our life. As we always had to give Caleb's date of birth when we checked in at the Cancer Center, he came to know it by heart and could even answer for us. A funny memory now.
Caleb was so excited to be "BIG" - how ironic that now, with the help of God, he's really bigger than us all.
So, we will probably celebrate Caleb's birthday with a Taco Cabana meal in his honor and bring him some celebratory things at Mt Olivet. He always did like a good party. How special his birthday party was last year ... if you've forgotten, there are photographs on the Pictures page from last year's party.
Christmas time was Caleb's favorite time of year -- he loved getting the tree, decorating, hanging lights -- so we are going ALL OUT for that this year in Caleb's honor. It was admittedly hard to get started, but we have decided Caleb would want us to go full force and so we are. Exterior lights went up yesterday (well, about 90%) and we just have a few more strands and the swags to get up for lighting. We're going to do some reindeer this year, too - how Caleb would have loved those. He always enjoyed going to Miss Althea's yard to check out her cool decor - don't know what he'd have done with a reindeer of his own.
I hope everyone is well. Please forgive the slower postings and, if you're e-mailing us, the slower responses. The office is torn apart right now (including computer) while a water leak that damaged the subfloors, carpet, etc is repaired and we're using our "backup" methods! What a mess. Hopefully in a week or so, we'll be back to normal.
Praying that this Christmas season is a joyful one, and a blessing to you.
Tuesday, November 20, 2007
Dear Caleb Joshua,
We just had to write and tell you that we had a very special night visiting your Fire family at League City Station 1. Taco Cabana did themselves proud and delivered a first-class Fajita meal, and we had a really nice time visiting with your friends and sharing memories of you. While we didn't eat your favorite food (that is, the Bean & Cheese Burrito) we did have your favorite Chips & Queso with our fajitas. But we saved all the red chips for you, don't worry. We watched the video of your awesome fireman send-off, and the John Deere video that you loved so much too.
Your friends are so special, Caleb. They are so giving that they leave their families every day, and put themselves in danger to help people they don't even know. Actually, I guess, they are among the most loving people I have ever had the chance to meet. I can see so clearly why you loved them so much. And I am so proud that you were a firefighter, too. You fit in with them just great. You have some very special friends, Caleb Joshua, and they love you and miss you. We do, too. Hopefully, it's OK with you if we call them our friends, too, because we think they're pretty special. And we are so grateful to them for loving you so much.
I know you're doing GREAT, son, and I'm so happy for you that you're with Jesus now. We miss you lots, Caleb Joshua, but we love when you come near and remind us you're around. Have a great first Thanksgiving in Heaven, son, and know that we love you and miss you, too. Aunt Yvonne, Uncle Jorge, Julianna, and Marissa are here for Thanksgiving, and Bubba and Sister too. We'll be thinking of you.
Daddy & Mommy
Saturday, November 17, 2007
Today was definitely a tough day for us. Perhaps 'bittersweet' would be the right word. This morning was the Memorial Breakfast for the patients at the Texas Children's Cancer Center who passed away over the last year. It was a beautiful remembrance, held downtown at the Doubletree. We got to "know", through pictures and written memories, the other children at TxCCC who were taken by Cancer over the last year. It was a hard morning, but yet another step in the healing process. The Dobsons joined us for the program, and we got to see Dr Kilburn - we enjoyed that part.
This coming week, we are going to visit Caleb's brothers and sisters at the League City Fire Department. It will be good to see them. We'll have to get some pictures.
This week, of course, will bring the first Thanksgiving without Caleb. He so loved the fall, and having his cousins visit for Thanksgiving. And, you know, as I look back, we have so much to be thankful for this year. Thankful for friends who stood by us through it all, thankful for our family, thankful for the Doctors and Nurses who kept Caleb comfortable through everything and loved us too, and thankful for a faithful and loving God who ministered to us through all of you. And thankful that, if he couldn't be here with us, that Caleb received the ultimate reward of eternal life with God.
And speaking of Thanks, THANKS for the wonderful messages in the guest book. Heidi, Tammy, and Vicky, we are so grateful for your awesome words.
Happy Thanksgiving, everyone.
Sunday, November 11, 2007
I am moved to tears ... let me explain.
I took the opportunity to organize some files on the computer. Over the last 6 months, lots of things got away from us and we're still "digging out." Anyway, I went into the directory where the sound files from my portable voice recorder are synchronized. Now, I should tell you that I used to let Caleb play with my voice recorder all the time -- he just loved it. So, as a consequence, I have many files of Caleb talking to the recorder. Now, in hindsight, they are priceless.
I've not listened to many of them, they've just been laying around for a calmer day. Some are quite lengthy. Anyhow, I was missing Caleb this weekend and I thought I'd click on one to hear his voice and listen to what he had on his mind that particular day. So I randomly clicked on one I had never heard before. What I heard almost stopped my heart. CALEB JOSHUA, I LOVE YOU! THANK YOU FOR THAT WONDERFUL MESSAGE! I renamed it, and tucked it away for safer keeping. You know, looking back over Caleb's last months, there were so many signs that he "knew" he was going somewhere. Things he said, the blue bag in the last days, etc. I believe that our Lord laid on Caleb's heart some real wisdom, as best a 4 year old can understand it, and asked him to do some things as signs for us that all will be OK. This, I think, is one of those things. I think God knew we would miss Caleb, and we would be so comforted by this wonderful message someday. Today was the day.
So I thought I'd share it. So go ahead, click it here, and listen. It's short and simple, but powerful. I think it was meant for all of us, not just me ...let me know if it doesn't work. You are welcomed to keep a copy, just right click the link and select "Save Link As". You can save a copy to your own computer.
Lastly, PICTURES!!! Caleb has really been laying on my heart the need to get his funeral pictures out. SO ... please go check out the Photo Gallery. I think you will enjoy the photographs of the Vigil, his funeral liturgy, and the Interment. God bless my wonderful friend, David Socolofsky, whose love and talent has left us these wonderful photos.
Saturday, November 10, 2007
We were touched by the guest book messages again this week - Colleen, Lisa, ZZ - thank you so much for your kind words, and the prayers that you continue to send us. God keeps us going each day - answering prayers just like those. Thank you.
Remember last weekend, how Caleb's fisherman bracelet was laid between the sheet and the mattress pad by Angel hands? I still can't get over that discovery. Lord knows how many times the bed has been changed - truly a sign from God. And here's another interesting one.
Yesterday, I was just clicking through the pictures of Caleb on the web site and I was focusing on July's photos. His last month. And suddenly I noticed it -- on his wrist -- his fisherman bracelet. You know the significance of it? I have one, too. It was given me on my ACTS retreat, and it signifies the "Fishers of Men" passage from the Gospel interaction between Jesus and Peter. Caleb always loved mine, so, I made him one too. He wore it now and again, mostly because I did I think (I never take mine off hardly). Look at all the photos on the site, but rarely do you see it on Caleb. Except in July !!! The bracelet shows up on his wrist regularly beginning in July (he had it for ~ 18 months before that). Go ahead, look at the pictures!! He asked for it at some point - so we put it on him - and he just wanted to wear it from then on. I clicked through the much larger volume of photos on the computer from July '07 and the same is true there. It's everywhere.
"SO?" you're probably saying. Well, I believe that God was preparing Caleb for his journey. Caleb said far too many things in the months preceding his death, and especially in the weeks preceding it, for the conventional wisdom of a 4-year old. He was inspired. And in his final days, he made the preparations for leaving (the blue bag, and some specific statements to his family). I believe the fisherman bracelet was just yet another sign that Caleb's life was transitioning from the earthly to the spiritual. Clicking through the archive I have on the computer, it's clear even in his eyes. He was disengaging from the earthly realm, and becoming a member of the spiritual realm.
God went out of his way to give us so many signs that Caleb was ready for his journey, and that He was ready to receive him. And he gave us signs of where he was going, in case we doubted it. What an awesome gift. And then, he tied it all together again last weekend with the bracelet under the sheet. What an awesome God! And I know that Caleb is "loving all over him," just like he promised he would.
Sunday, November 4, 2007
Yesterday morning, I read the two new entries in Caleb's guest book. Thanks, Eileen and Tracey - your words were uplifting. Thanks, also, to the many of you who've posted in the guest book immediately after his passing, and since. As I mentioned, we decided to sponsor it online for a year so anyone who felt called, whenever, could leave a thought. Next August, we plan to purchase a bound keepsake book of the postings from Legacy that we'll hold on to forever. As a reminder, the link to the guest book is http://www.legacy.com/Link.asp?I=GB000092029748 if you happen to ever feel called.
Annette was away at a Church retreat this weekend, and I guess the house was feeling a bit quiet. So, probably a bit selfish of me, I asked God and Caleb to just give me a sign to remind me that Caleb was near. I hadn't seen any Caleb signs in a while. I just needed something to give my soul that boost it gets from Caleb coming near.
So yesterday, I put on a pair of jeans shorts that I've wear often. My typical evening-and-weekend attire. So, I've filled pockets / emptied pockets / etc on those shorts many times over the last few weeks. Plus they've been in the wash at least weekly. Well, yesterday, as I put my hand in to grab my keys, I felt something in the bottom of the pocket. I pulled it out ... It was a miraculous medal! Caleb just loved the miraculous medal, as he did anything with an image of the Blessed Mother on it. Gave my heart a jump. And I thanked God for the sign, and thought that was the answer to my prayer. But that wasn't all ...
And then, this morning, I was stripping the sheets from the bed in the master bedroom. Now, usually, Annette launders the linens, but with her being away this weekend, I was doing the laundry. As I went to pull the fitted sheet off the bed, I was watching for, and ready to see, some sort of discoloration of the mattress pad from where Caleb had a few wetting accidents at night in his last few days (of course, knowing Annette, she's probably already replaced it if the washer didn't get it all clean, but I didn't know for sure -- like I said, she does that stuff not me usually!). I pulled back the sheet ...
Not only was there a pristine white mattress pad underneath, but Caleb's fisherman bracelet was laying in the spot I expected to see a stain in! This one gave my heart a double jump. It was physically between the mattress pad and the fitted sheet! Praise God! The meaning was immediately clear to me. "You, Dad, were looking for a sign of my illness. I am healed! I choose to show you a sign of my life!"
Amen, indeed, son! You are more alive and healed then we could ever hope to be down here. And by the grace of God, someday, we shall see for ourselves. Until then, thanks for dropping in. And thank you, Lord, for answering yet another prayer ........... From Caleb's services, "Who am I that You are mindful of me? That You hear me, when I call?" But You always do.
Saturday, October 27, 2007
Well, only a week since the last update -- so that's much better, no? :-) Today brings another milestone for us - the "fall cleaning" of the house, and the movement of many of Caleb's toys which remained in the living room (his main daily play space) up to his room. We miss you, son, but we know that you are flying around the heavens under the wings of God. How could we be mad at you for that? That makes me think of something - at times when Caleb would misbehave, and we'd have to correct him - when finished, I'd tell him, "Caleb, Daddys always love their little boys." He'd sniffle, look up at me, and say meekly, "do they stop loving them when they're mean?" And it would melt you heart. I'd just say, "no, they love them even when they're mean." Wow, I miss that.
It was nice to see the post on Caleb's guest book - thanks, Christy, for sharing with us. That was awesome.
I did have an experience that I thought I might share, that might mean as much to you as it did to me. But it means sharing something I really haven't yet - so be it I guess. Annette has had meetings at Church on Wednesdays that have kept her out a bit late, and so, I have taken 30 minutes or so on the way home those evenings to stop at Taco Cabana and enjoy a "dinner with Caleb." It has given me a lot of peace, because it brings back a happy memory for me when I sit and eat our "usual." It doesn't make me sad, it actually brings peace because I believe I do feel Caleb with me. I do confess, I have felt a bit weird about it, as if I'm being silly going to Taco Cabana for that reason. But this week, while I was eating, I saw a man and his son eating dinner and suddenly, I flashed back to something that happened earlier this year when Caleb and I were eating. I thought I had written of it, but I can't find it anywhere in the notes below. So, here goes again. I have to explain this before I can tell you what I realized ...
So one day, Caleb and I were eating our "usual" and just talking about stuff. A little boy, probably about 7, walked by our table. As he passed me and was next to Caleb, he stopped - literally - and turned around and looked straight at me. He gave me this kind, slow, loving smile, and then turned and continued on his way. It was one of the most peaceful and loving smiles I've seen. I was (maybe 5 seconds) temporarily immobilized, because it just seemed strange. Once I regained myself, I looked in the direction he went - but there wasn't anyone there. I turned around to see if he'd looped back to the soda fountain, but nobody was there. Thinking he'd maybe gone into the restroom, I waited a few minutes to see if he returned - but he never did. I then looked around the dining room, and nobody else with a child was there! It was strange. Later that day, it snapped to me that God had sent me an angel to tell me "it's OK, David - I'm not far away." As I said, the smile was so peaceful. So, I tucked that away in my heart, and thought I'd understood it simply as God drawing near.
OK -- so back to last Wednesday --
I'm noticing this man and his son eating, feeling a bit strange about wanting to encounter Caleb at Taco Cabana, and my mind flashes back to the event I described. And then, the fuller meaning of the event came into my mind ... I think that God dropped an angel into Taco Cabana that day, months ago, to show me that angels could, in fact, show up at Taco Cabana! So, I no longer think it silly to believe that the warm feeling I get when eat "the usual" at Taco Cabana is Caleb joining me for a bit. I think he does! Thank you, Lord, for continuing to share my son with me.
Friday, October 19, 2007
OK, don't anybody hurt themselves falling out of the chair! Yes, it's really a NEW posting. And yes, it has really been a month since I wrote anything. I could blame it on the fact that I've been travelling for 3 of the last 5 weeks ... but the better (i.e., more correct) answer would probably be that I haven't felt called to. And, I'm not sure that I really do now -- but, enough people have now said something to me that I guess I should probably put something down! Believe you me, I have felt guilty about not writing anything. But again, I just haven't felt called to. Maybe those of you who've said something are the messengers from God -- so, I'll give it a good try and sit down for a bit and share some thoughts.
So, having asked Caleb to give me some help with this, here goes.
This week brought another major event in life ... Dorothy died. Those of you who knew Caleb well would immediately recognize that Dorothy was Caleb's pet fish. It really did hit me a bit hard because it was the last "living" reminder of Caleb and he was so proud of her. I'll admit I'm very sad about it. She will be laid to rest with her biggest admirer, Caleb Joshua, just as soon as I can get her there.
We haven't picked out a memorial yet (although, we are actually working on it); we haven't gotten "thank yous" done yet; we haven't gotten a video done yet; etc. It'll happen someday. We're actually gaining some momentum to get going on these things; there are TWO HIGH PRIORITY items - first, funeral pictures on the web site; second, we really want to go visit Caleb's brothers and sisters at LCVFD Station 1. We have missed them.
We do go and visit Caleb every week we can -- although the last few weeks of travel have disrupted that -- and we like to bring bagels down and eat Breakfast with him. We take note of, and feel much warmth and joy, when we see that Caleb's friends have been there to come spend some time with him and left a little something. It does comfort us to know how much Caleb was loved.
Tonight Annette was watching Caleb videos. The time period was 2006 Christmas - Caleb's last - when he was recovered from the initial hit of the tumor, and the radiation had done some good, but before the thing came back so vengefully. I had forgotten how "alive" he was, how clearly he spoke, how much he laughed, how easy he was to entertain, etc etc -- a lot of things. I had grown more used to the Caleb since 3/31/07 when he started the downhill slide. How easily we get used to things.
Many of you have asked, so an update on DJ -- he is undergoing treatment for the tumor, and his outlook is very bright. Praise God.
And lastly, you may remember that at Caleb's passing, the obituary in the Houston Chronicle had a "Guest Book" attached to it that you could leave messages in. Well, I was going to get it printed & bound as a keepsake (a service they offer) but I decided to sponsor it for a year to keep it online and active. You can still post to it. I thought that perhaps if anyone felt called to share something during the next year, you could do so. What has been written so far has been of such comfort to us. Here's the link: http://www.legacy.com/Link.asp?I=GB000092029748
And next to last ... our e-mails have changed. Comcast bought Time Warner so we lost the "@houston.rr.com" addresses. We have just decided to use the addresses associated with our web site, ingram-family.net. SO ... we are now ...
I just couldn't bring myself to not move Caleb's e-mail address. So, I did! We have received some reports of Annette's address bouncing back ... but then plenty arrives with no problem - we're not sure what's going on. However, if you do e-mail any of us and receive an error, please keep the e-mail because I need the error code to figure it out. Alternatively, you can use email@example.com (Annette) or firstname.lastname@example.org (me). But please, if at all possible, use the ingram-family.net addresses since they'll theoretically never change no matter who is our internet provider or where we live. IF you do happen to e-mail us @houston.rr.com, don't worry, it forwards to us automatically through end-of-year.
Wow, that was pretty discombobulated - but I'll try to write more often and I'll get better at it again I hope. Hope you are all doing REALLY WELL. We truly miss seeing everyone. Good night.
Saturday, September 15
Wow, has it really been that long since I updated?
And it's now been 6 weeks since Caleb went home to eternal life. There is still this great big hole in our life where Caleb used to be, but I have to tell you, God and Caleb have been busy letting us know that he's still with us and looking out for us. I've spoken of some ways we've experienced Caleb; but I just have to share this update with you. One, because you'll see just how much Caleb is alive, and second, because prayers are really needed.
Our wonderful (former) neighbors, the Doga's, moved away to Louisiana last year. They have a little boy, DJ, who is a year younger than Caleb. If you knew anything about Caleb, you knew he loved babies and taking care of them. Since he was a year ahead of DJ, he always took care of him. Now, he was a bit jealous that DJ loved Annette :-) but he looked out for him. We have missed them since they moved. Anyway - DJ recently has been displaying some concerning symptoms. He experienced some facial paralysis, and a very slight (i.e., imperceptible!) eye alignment issue. The doctors in Louisiana told his parents he had Bell's Palsy and they gave him some steroids. Symptoms improved. However, DJ's Mom told us that Caleb came to her clearly (!) and told her that DJ had a tumor. So, she pressed the doctors for an MRI. Apparently, it was quite a struggle to get them to do the MRI.
Unfortunately, DJ has a tumor. However, his is very different then Caleb's. It's not in the ever-critical pons (brainstem) where it can't be removed. However, it's behind his eye, and almost up against his brain. But it hasn't gotten there yet! DJ's parents brought him to Texas Children's, and Caleb's doctors are evaluating him. They plan to remove the tumor next week (or soon), if all continues to go well with these tests. The doctors were amazed that the tumor was found this early. We're not! DJ's Mom has told us that if it were not for her vision of Caleb, she would not have pressed for the MRI. Because the tumor was found early, this could turn out to be just a surgical matter. Let's all pray for that! Please, send up prayers for Caleb's friend DJ that the neurosurgeons will remove this tumor and that will be the end of that - forever! (and by the way, no, the coincidence of two boys, neighbors and playmates, having brain tumors - albeit different kinds - has not escaped us ......)
I'm proud of you, son. Still looking after DJ. I know that you will not stop. What parents would not be so proud as to have such a beautiful angel? We miss you here with us, son, but we know you are about important work. We are so grateful to God, that he continues to allow us to see your presence. How awesome.
Next week, we have 1 or 2 meetings with folks on Caleb's monument (stone). The project is picking up speed.
I'm off to Virginia for most of the week -- Annette is here, and Pam is coming -- so no updates until next weekend probably. God bless you all ... and goodnight.
Tuesday, September 4
Well, we had a REALLY NICE weekend in San Antonio. It was nice by any measure, but it qualifies for REALLY nice because Caleb once again let us know he was there! This is neat, read on ... so, we left Houston on Saturday morning - got a late start - and I'm not much of one for the interstates (except going 10 hours to Lubbock!). I like to meander through the countryside, and if it takes me 10% longer, so what - it's a nice ride. So, we were heading down 90-ALT out of Houston and on the other side of Sugarland we met up with a long UP train heading westbound. Due to the way the traffic lights are synched up, we wound up following this train for a long ways. When we entered the Richmond-Rosenberg town cluster, we lost the train -- we go into town, the train goes north of town. I was musing to myself how much Caleb would have LOVED this ride. The arms going down, the bells, all following us and the train for so far as we were side by side for miles and miles. That never happened to us before! What a coincidence, I thought. Well, anyhow, we got stopped a bunch in the town (lights) and finally emerged on the other side of Rosenberg where 90-ALT again runs right up to and parallels the tracks. As we came around the curve, and came parallel with the tracks, out of the trees comes our old friend the UP train, again right even with us! At that point, we were clear of the towns so I laid into the accelerator and we lost the train. But I thought, how neat! But how weird! What are the odds? Caleb would have loved that.
It wasn't until later in the day, as I was telling the story, that it hit me ... either Caleb was on the train :-) or the Lord was sending us a sign that Caleb was with us this Labor day! Either way, it was a nice way to begin the weekend.
So the weather in south-central Texas wasn't that great over the weekend ... clouds, and some rain. But Saturday was nice enough we managed a good day in the pool. Some of Jorge & Yvonne's friends came over, and we had a nice time visiting and (of course) eating. Sunday and Monday was a mixed-bag weather wise, but we relaxed. It was good to see our family - we have missed them.
I've begun working on the page for Caleb's services, incorporating the photos which our good friend David took for us. Should be up in a day or two.
Thanks for your continued prayers, love, and support. One day at a time ...
Friday, August 31
It's hard to believe that on Monday, it will be a month since Caleb passed away. I cannot describe how much we miss him. But then, I know that all of you do, too. In my own case, it's a very odd dichotomy because on the one hand, I am so happy for Caleb!!! He's in Heaven, enjoying eternal paradise with God. But on the other hand, it hurts that we don't have him here with us. There is so much we wanted to do with him. And I know he doesn't want for a thing -- but I guess it comes back down to the simple parental desire to be able to see your kids enjoy things that you know they would. I so much wanted to enjoy this labor day swimming with him - but the memory of last year's labor day, in Aunt Yvonne & Uncle Jorge's pool, will just have to live on in our memory. Actually, in hindsight, that was one of the first real serious signs that we had a problem - when he jumped into the pool on top of Julianna (and we punished him), and when he jumped into the pool on top of me (and loosened half his teeth in a bloody mess, sinking his teeth into my scalp in the process!). I honestly don't think he could help it, in retrospect. Last Labor Day, about 365 days ago now, we had no clue of what the year ahead would hold.
That reminds me that September 21 will mark a year since his diagnosis that dark night in the ER. What a year this has been.
So, let me tell you something that brought a huge smile to our faces yesterday. For those who were able to attend Caleb's services -- you may have noticed someone sneaking around taking pictures. Maybe not, too, because he did a great job of being discrete! He wasn't CIA (well, that I know of , anyway) Our good friend David Socolofsky, who has a photography business, ministered to us in an awesome way by making a very nice record of our goodbye for Caleb. Yesterday, delivered to me, was a WONDERFUL memorial book full of images of Caleb's send off. It is so beautiful. Annette and I spent time with it yesterday - she talks more than me :-) (can you believe that???) and she tearfully remarked no less than 30 times how "wonderful" it is. And, he gave me a CD full of beautiful images. I will put together a web page of some of these memories from Caleb's send-off for those of you who couldn't join us (and those who could). Yet another example of angels in our life :-)
So, we plan to spend this Labor Day as we did the last one - with our awesome family in San Antonio. Caleb will be badly missed. But we sense him, now and again, and I know he'll be sitting on the edge of a cloud looking down, giggling himself silly as Luigi falls into the pool (the dog). Make it a non-rain, non-thundering cloud please, son - and enjoy your first Labor Day with the Lord. No falling into the pool off-balance this year, because praise God, you are healed. We love you.
Sunday, August 26
We picked up some bagels from Einstein's again this morning, and went down to Mt Olivet to visit our angel's place of rest. Since we were taking Christopher to school last weekend, it's the first time I've been there in 2 weeks. As always, it was a beautiful spot and the morning sun bathed the area nicely. The "Love Bugs" were so thick you almost needed aviator goggles -- it's that time of year in South Texas. The "Flower Mound" is gone now, the dirt has settled, and the cemetery folks obviously have cleaned up around there a bit. The only evidence that anything is different about that spot of ground is that there's a rectangle with no grass on it. Yet another reminder that we need to begin thinking about Caleb's monument. SO, we are.
We spent some time this morning looking at the various styles of monument in the cemetery, and took pictures of some things we liked. We also looked online at some granite crafters, and reviewed some info the folks at Mt Olivet gave us. It will take a while. But we now have at least some ideas.
But we are missing our cowboy. It was 3 weeks on Friday since he went home to the Lord, and we miss him terribly. At times, we feel his presence - as if he draws near. But interestingly, Mt Olivet - in all its beauty - is not one of those places. I think we will always enjoy going there to visit Caleb's grave, to spend time in the peace and stillness of his gravesite, and to reflect and pray. But it's clear - he's not there. I am drawn back to the wonderful scripture - "Why do you seek the living one among the dead? He is not here, but he has been raised." (Lk 24:5-6) I am almost expecting a gardener to approach me with the same words one day. I can also visualize Caleb -- he'd be behind me, with his hands grabbing on to mine pulling me away -- saying, "Come on Daddy, I'm bored, let's go DO something !!!" I know my son, and I don't think he's lounging under the tall pines and warm sunshine of Mt Olivet -- he's zipping around the Heavens! That was always Caleb. You enjoy it, son.
But, amidst the pain of our separation from Caleb, there remains the fact that God raises us from bed each morning and gives us the strength to get through the day. He has not fallen short on love and support of us during this tough time. He gives us the internal desire to go on, and He brings wonderful people to our lives each day to encourage us. And, we hold on to His promise that one day, we will see our son again.
Thursday, August 23
Our week has been good so far - but then, we have been busy as bees. We sure seem to have a lot to do these days - I wonder how we found the time to sit on the couch for hours and hours with Caleb just a few short weeks ago? Perhaps we're working off the "backlog" that accumulated during his illness (seen our house ??); or, perhaps, we're finding things to do so we can stay busy. Whatever it is, there is no lack of things. It does help keep our mind engaged.
We have continued to be blessed by God through things that people tell us. We have had at least two more people come to us in recent days and tell us what an impact Caleb's funeral had on their life - and how they have been called to return to the Church. Praise God! He sure has a funny way of doing things like that. After my own mother died (long time ago, 21 years ago) - I felt called to return to the Church which I myself had been away from. That was where God planted the seed in my mind again, calling me back. Now it seems he is doing that for others, through Caleb's death. It reminds me of two lines from one of our worship songs - "Do not refuse the death which brings you life," and "for as the grain of the earth must die for rebirth ...". I know those lines refer to our own death and resurrection, however, I find it neat that God can throw that blanket wider and bring others along as well for a spiritual rebirth here on earth. As our pastor told me when Mom died, "perhaps her death was your rebirth ..." Hmmm, same thing 21 years later. God is definitely up to something. And we're still finding out about it.
Which brings me to another point. Annette has been journaling during Caleb's illness, and she has asked that if anyone has anything you'd like to share about how Caleb's life, illness, or death affected you, to e-mail her. She would be honored to know. I think it would help her with her thoughts as she journals.
Thanks again for your tender care of us. Who could ask for better friends? Praise God, indeed.
Tuesday, August 21
Sorry for our delay in updates. We traveled to Lubbock, TX, on Saturday morning to bring Christopher to school at Texas Tech. Go Red Raiders! He continues the Red Raider tradition started by his sister, Natashia. I have no doubt it'd have been continued by Caleb, as he truly loved Lubbock, and Texas Tech. Of course, his first allegiance was to Virginia Tech :-) but he adopted Texas Tech so well. He did REALLY love Lubbock, though. So many things happened there - he stopped drinking from a bottle and moved to a glass (when he bit the nipple off the bottle - great transition point!); he erased all the inboxes on Dad's two-way pager; he learned about elevator buttons; he went trick-or-treating for the first time; he ran through a corn maze for the first time; he rode in a barrel pulled by a tractor; I could go on forever. And he remembered all those things and spoke of them often. So, this trip was a bit emotionally tough for us we kept looking in the back seat of the car - but Caleb was not there.
And we'd be lying if we didn't admit, as we drove away, the unescapable emotion both Annette & I had simultaneously - that another son has moved on. Of course, this is very different - but still, a separation. Christopher will do awesome. And we'll go visit him. And he has a great roomate, and is very excited. All good ingredients for a successful recipe.
Caleb did peek in on us a few times over the weekend - he never could stay far away when something was to be done. As we were driving down US-287 through Waxahachie, Annette and I were reminiscing about Caleb's services and how beautiful they were. Annette had asked for me to put some music on, so I did - and one of the hits on the "scan" button produced a Christian radio station. And the next set they played contained two of the songs from Caleb's vigil and mass. What are the odds? Thanks, son, we needed the pick-me-up and reminder that you're around.
We are missing Caleb, badly. But something a friend wrote to us recently has rang out again, and again, in my mind - "God is too wise to have ever made a mistake." Amen, He is. I just need to keep reminding myself of that. Heavens knows that He's showed us, over and over, all the good things that He accomplished through Caleb. And, that helps a LOT. Really it does. How blessed are we. But still, we miss Caleb.
Tomorrow, Annette is going to go visit him. We're also going to begin the process of picking out a suitable monument for his grave. Something that is truly Caleb. We'll see.
Hoping you all are doing well. How blessed we are to have you in our lives.
Thursday, August 16
Well, we're hanging in there. We're still missing Caleb very much, and the complete understanding that he's not coming back sinks in more with each passing day. We do hurt inside -- not from any misgivings about where Caleb is, nor from questioning God's divine plan - but just from the plain old simple human emotion of missing our son. I keep expecting him to come into the den while I'm on the computer and want to type. But I know he won't. But let me tell you, if God has a computer, Caleb is asking to type on it! Let's just hope he doesn't hit the wrong button on THAT computer. So if you read about Mt Vesuvius coming to life, you'll know Caleb is messing around on the wrong computer up there :-) I love you, son.
However, this week's mail (both electronic, and postal) brought wonderful letters from people who have been affected by Caleb's life. We received two wonderful letters from people - one of whom we don't even know - about how Caleb affected their life. Praise God. We have been so blessed by God allowing us to see just some of the awesome things He's done thru Caleb - and it does help to make it a bit less painful. I think God knows when we need a bit of an emotional boost - so He has just the right person drop us a note and share something with us. It does help.
We are taking Christopher to college this weekend, so that will help keep us busy. He is very excited. I know Caleb is smiling that big brother gets to go off to college.
When we get back, I'll start working on the DVD more seriously.
We hope you are all well --- God bless you!
Sunday, August 12
Well, we made it through our first weekend without Caleb and the family. We still have enough chores around here to do that we're staying busy, so Saturday morning didn't go by slowly. There was no "Special Saturday Lunch" with Caleb on Saturday at Taco Cabana, but Annette joined me for our new "Special Saturday Lunch" -- Mom and Dad -- at Schlotzskys. I know Caleb would be happy about that. Perhaps we can make this a new tradition, to honor Caleb. It'll be a little while before I think I can go do it at Taco Cabana, though. But I know that day will come as the healing goes on.
This morning, we bought bagels at Einstein's (Caleb's favorite) and took them down to Mt Olivet. We spread out a blanket and just had breakfast near Caleb. He so loved bagels - especially Einstein's - we would get them and go to the park sometimes. I know Caleb's soul has long gone to heaven, and he's not hanging around his earthly place of rest - but it gave Annette and me some peace to just be near his physical body. I don't know if that makes sense or not, but it helped. If anyone has gone by to see Caleb, of course, it's just a fresh grave at this point - no marker. Annette and I will probably begin to design the perfect monument for Caleb next week sometime, after we get Christopher back to school.
Tomorrow, I go back to work. Natashia, our new 2nd grade teacher, will recruit Annette to help a few days in her classroom this week - so that will keep us all busy for the first part of the week, anyway.
Thanks to everyone calling us, and checking in on us. Thanks be to God for all of you.
Friday, August 10
We really miss Caleb. Just had to say it. We know where he is, and we thank and praise God for His faithfulness, and His mercy. And, honestly, we thank and praise Him for the wonderful care He is taking of us - often through you - but we still miss Caleb. We are watching lots of Caleb videos, looking at pictures, and enjoying good memories of him. The reality is beginning to sink in. Today, everyone leaves - so tonight, it will just be "us" here.
On Wednesday afternoon, we went and visited Caleb at Mt Olivet. It was strangely peaceful, not the more emotional event I thought it might be. I will admit that the the "flower mound" brought home more of the reality of Caleb's passing, but in a sense, seeing the grave closed took us another step in our journey towards closure. It will be OK, I know, just a matter of how long. Please keep praying for us, for wisdom & understanding. Thanks.
We are working on a DVD of Caleb - to include his most famous slide shows (the "John Deere" video, the video from Disney which we showed in the back of the church during visitation, the "Visitor from Heaven" video we showed during the actual vigil, etc). Also, maybe some pictures from Caleb's life in no particular order. If you have interest in it, just let us know by dropping an e-mail. When we finish, we'll be glad to give/send you one. Might take a month, but we'll get there. It's actually a bit therapeutic for Annette & me to work on and we'd be honored to give you one.
ALSO ... if anyone did not get a nice, laminated prayer card from Caleb's service - this one here ...
and you want one, please tell us. The awesome folks at MemorialPrayerCards.com did a superb job with this. And, on top of that, they were awesome at communicating with us and really bent over backwards to overnight these to us for the Mass on Tuesday. What terrific people - God has brought such great people to us during this journey.
As I said, we plan to create a memory page of Caleb's soon. We're OK ... have a good day.
Wednesday, August 8
Today begins the reality of our earthly life without Caleb. The services are done; the family is beginning to leave. Although some of our family will hang around for most of the week, we are missing him a lot. We keep catching ourselves saying, "Where's Caleb? Who has Caleb?" And then we remember that the best one of all has him - our Lord. And while we rejoice in that fact, it still hurts that we can't hug him or hear him say "I love you." Selfish, I know, but it is what it is.
Caleb's services were beautiful. Our son is SO proud of his send off. We're going to add a page for "Caleb's Earthly Goodbye" over the next week or two; we have lots of good memories to share from the services and we want everyone to know some of the key things even if you couldn't be here. So, stay tuned for more memories and pictures, shortly to come.
But just a few things we want to share now ... Caleb looked absolutely awesome. I only wish I could see how big he was smiling about the way he looked - the folks at Crowder Funeral Home did a superb job all around, but the way they presented Caleb was so wonderful. It brought tears to my eyes how great he looked -- thanks to them. And, he made the 10 mile journey to Mt Olivet Cemetery atop League City Engine 13, with Firefighters Barbara and Katie on either side of him and Fire Captains Jack and Ray behind him. Captain Byrd and Firefighter Ramiro from the Exxon Mobil Baytown Fire & Rescue Teams led the procession in Exxon Mobil's Fire Engine. What an honor - we have photos, they'll come soon. And, to the men and women of League City Station 3 and Ladder 33, thank you! You joined us for Caleb's service on Tuesday morning but duty called - and we understand. So did Caleb. And how special that you were able to come back and meet us at the entrance as we turned into Mt Olivet. You are awesome.
Deacon Luis and Father Albert did a wonderful job with the services. Really powerful and moving. How blessed are we to have them.
And the attendance was nothing short of amazing - Caleb is smiling SO broadly because of the friends, family, and extended family who came to bid him farewell!! He loved people and a crowd, I know how happy he is. Thanks to all who came to bid him farewell, to support us, and to be there for this holy moment. We are so blessed by you all. Our entire family was here; many members of Caleb's church family; friends from David's work; friends from Annette's work (like, 5 years ago!); our Creative Corners family; all our wonderful friends who have stood by us this year (and all the ones that came before it!); Natashia and Christopher's friends; I could go on and on! And, a very special gift to our family, JJ's Mom drove 14 hours from Alabama to Texas to be here to support us and bid farewell to Caleb Joshua. How blessed are we! Thank you, Lord, for sending all these wonderful people to support us. You knew we needed it.
And, as another special gift, Caleb's fellow firefighters of League City Engine 13 stopped by our house last night to check up on us. God bless you, dear friends - your brother Caleb loves you. And so do we.
More to come ... have a good day.
Monday, August 6
10:30 AM - Preparing for services this evening. I have preserved Caleb's obituaries here, in case you want to read them. They were beginning to scroll of to the archive, and getting harder to find. To those wanting to read them, this should make it easier. Caleb also has a guest book on the Chronicle obituary that can be accessed. How neat.
2 AM - Annette and I visited Caleb yesterday at Crowder, just to spend some time with him quietly before the action of today and tomorrow begins. It was very special, and very nice. Caleb looks wonderful - handsome as ever, and very much at peace. You would never know all that has happened to him over the last 11 months.
We spent yesterday getting ready for tonight's vigil service. It is going to be very special.
We received two pieces of news yesterday that brought us to tears, in a good way. You know, by now, that Caleb is an honorary member of the ExxonMobil Baytown Fire Department and the League City Fire Department. He was SO proud of that. To be considered a firefighter was his greatest source of pride. Well, here is why we cried today: First - the ExxonMobil Fire Department is sending a truck to escort their brother Caleb's funeral procession from the Church to the gravesite. Wow - how awesome. And then, second - the League City Volunteer Fire Department has offered to transport Caleb from the church to the gravesite aboard the Engine. Words cannot express the immeasurable gratitude we feel towards these men and women who have quite literally adopted our son. We are literally speechless! And so filled with pride for our son, and love towards his firefighter brothers & sisters. Caleb would be completely, totally, and absolutely beside himself with pride. Actually, he would be uncontainable! Fortunately, we know that he knows. I am sure he has not stopped talking about it since he found out. God bless these men & women.
Please come join us. Caleb always loved having everyone around -- he truly loved people.
Thank you, Lord, for healing our son. Caleb told me that he was going to "love all over" you when he saw you (yet another unprompted and faith-filled comment from Caleb's mouth in his final days). I know that he is wasting no time doing that.
Sunday, August 5
Yet another reality of Caleb's passing - his obituary has appeared in the papers. You can see, print, etc them here: http://www.galvestondailynews.com/obituaries.lasso and also, http://www.legacy.com/houstonchronicle/DeathNotices.asp. Note that the obituary which appears in the Galveston Daily News is much more complete and interesting. The one in the Chronicle covers just the bare facts. If you want the nice "Cowboy Caleb" photo above, for the Daily News obituary, you'll need to buy the paper edition. The Chronicle version has an online guest book, too.
Today brings the task of continuing to assemble the materials for Caleb's vigil service -- we're going to have a nice time, really hoping you all can come. The Funeral Service on Tuesday will be great, too; we're going to give Caleb a nice send off. Many of you who've followed Caleb's story know that he is a REAL firefighter (OK, so, well, "honorary") of both the League City and ExxonMobil Fire Departments. Both of his fire families are working out their participation in Caleb's send off - we are literally in tears of joy over these wonderful men and women who have so lovingly adopted our son as one of their own. What an awesome brotherhood they share with Caleb and each other.
The details are now firm for the arrangements, by the way -- and they are exactly as outlined in the post below (Saturday) which I've made Bold Blue Font.
Friday's post was brief, but I wanted to share some additional details of Caleb's Friday morning and afternoon. Some may find this hard to read -- and if that's the case, don't feel obligated - but this brings us such peace I wanted to share them. Please know that as I write, my heart is filled with feelings of peace and joy - not sorrow.
Caleb never really opened his eyes on Friday morning and interacted, but he was alert. His eyes lay closed, but he was very peaceful. There was no pain; there was no suffering; it was very beautiful. His friends came throughout the morning to visit, and to be with us. Around lunchtime, he began to have more visible difficulties breathing but again, he was not in pain. He passed away at 1:09 PM in his Mommy's arms and gazing into Dad's eyes with quite a look of peace; and holding his brother's hand and with sister next to him. Our friends, family, and our pastor and deacon were there, as we were praying the Divine Mercy chaplet. The room was very sad, but very peaceful. God took Caleb home in such a wonderfully loving, peaceful, prayerful way. Praise God, He is awesome. He showed mercy to my son all the way until the end.
Following Caleb's passing, our friends and family retired downstairs and I had the most sacred honor of preparing my son. Our dear friend Sheila Lopez helped me, and we slowly, lovingly and prayerfully sponge bathed Caleb, powdered him, and clothed him in shorts and a Nike T-Shirt. Please don't be sad; it was a beautiful experience that I am so honored to have had. Our family and friends came, one or two at a time, and we just spent time with Caleb. He looked SO beautiful and peaceful, just like a little angel lying there. Amen, he is! Praise God. I can't tell you how much peace God provided us all. It really reaffirmed our wanting Caleb to pass away at home; it was so beautiful.
The loving folks from Crowder came by, and I carried Caleb downstairs to their waiting stretcher which was beautifully adorned with nice linens and blanket. They tucked Caleb in so nicely, it looked like he was just going for a ride. And they carried him away, and drove away, in a most reverent manner. They were awesome. It was like he was their own son. Our friends and family were downstairs and surrounded us as Caleb left. We were so sad, but yet, strangely peaceful. Thank you, Lord, it was how we had wanted it to be (if it had to be at all).
Caleb was then taken to Texas Children's Hospital, where the tumor which claimed his life was finally removed from him. It will be used by researchers at NIH, and through Texas Children's, to help find a cure for this awful disease. It was the last contribution which Caleb could make. It is our fervent hope that it will help these wonderful men and women researchers to learn more. We hope that sometime in the future, no parents will have to be told that their child has DIPG and there's nothing that can be done. We hope this perhaps provides one more piece of the puzzle. Thanks especially to Dr. Lindsay Kilburn at Texas Children's who helped us arrange this. And thanks to our friends Jim and Diana Lipski and their own angel, JJ, whose example gave us the courage to do this.
Caleb is now prepared, and resting at Crowder. We're going to go see him today, to spend time with him and maybe cry a little. Then, we're going to come home and resume getting ready for Monday and Tuesday.
Even though Caleb is in heaven, we still welcome visitors! Come anytime, we're up usually 7 AM until about 1 AM! We are doing OK because of the faithfulness of God and the wonderful love and support you've been coming by and providing. The e-mails, too, have been heartwarming. We are especially thankful for the condolences being sent by parents of DIPG angels and those still fighting. Please know that we intend to respond to everyone who has written us! It might take a bit - but we will do so, we are so grateful for the support.
God bless you all for your constant love. And thanks be to God, for the peaceful and merciful way he brought Caleb home.
Saturday, August 4
Well, it's late, late here - early morning hours of Saturday - and the house is still awake as we process the day, and begin the process of planning Caleb's services. The reality that Caleb is gone has not fully sunk in - that will come over the next few days. I think, right now, we are delaying going to bed because we know we will do so without Caleb between us.
We now have tentative details on the arrangements for Caleb. Please watch here for finalized details, probably on Sunday.
FIRST: A vigil service celebrating Caleb’s life, will be held on Monday, August 6, at St Paul the Apostle Catholic Church, 18223 Point Lookout Dr, Nassau Bay, Texas. This will be in two parts: a traditional "reception" where we'll greet visitors beginning at 5 PM, with plenty of memories of Caleb for you to look at - so please come visit with us, and Caleb too; he'll be brought there. Then, a more structured service in the Church will begin at 7 PM. The service will be presided by our wonderful Pastor, Father Albert Maullon, and our wonderful Deacon, Luis Lopez. We would be honored for you to attend. We will have some great memories of Caleb, and if you feel called, you are welcome to step forward and share some as well during the service.
AND THEN: A Mass, celebrating God’s faithfulness and Caleb’s ascension to new life, will be held on Tuesday, August 7, at 10:00 AM at St Paul the Apostle Catholic Church. 18223 Point Lookout Dr, Nassau Bay, Texas. Father Albert and Deacon Luis will preside. Likewise, we would be SO privileged to have you attend and celebrate with us. Following the service, we will process to Mt Olivet Catholic Cemetery in Dickinson, Texas, where we will lay Caleb’s physical body to rest.
Following the Interment, we'll have a reception but we're still figuring that one out.
We hope you will be able to be with us. God bless you all.
Friday, August 3
Dear Friends and Family,
At 1:09 PM today, Caleb Joshua was given wings by our Lord Jesus Christ, and flew from the human limitations of this earthly world and into the waiting arms of God. Alleluia, HE IS FREED! No more is he worried about getting “poked,” falling down, drooling, or any other such earthly concerns. He is basking in the love, peace, and joy of eternity with God. And because God is faithful, we know that we WILL see him again. Our separation is but temporary.
He joins his Grandma Arlene, his Grandpa Vito, and his Grandma Beverly, who are without a doubt losing no time loving all over him and welcoming him.
I will keep this note brief. However, we are making final arrangements for a celebration of Caleb’s wonderful life. We would consider it a true honor for everyone to join us as we celebrate Caleb’s ascension to eternal life, and reflect on the immeasurable blessings God bestowed on us during Caleb’s short life.
I will update this site as we finalize the timing. The arrangements are being handled by Crowder, in Webster, TX, and Caleb will be laid to rest at Mt Olivet Catholic Cemetery in Dickinson, TX.
We are OK. Of course, we are very sad right now, and already missing Caleb terribly. We remain grateful beyond words for the support you have so selflessly given to us. We are so blessed, and thank God for you all.
David & Annette
8:15 AM - Caleb has not awoken this morning. He fell asleep last evening on the sofa with Dad holding him, and spent the evening in various sets of arms on the couch before we put him to bed. He is still in bed this morning, and isn't showing many signs of waking up. We continue to give him oxygen and, as needed, Ativan for anxiety but we believe the Lord is now comforting Caleb beyond the need for medicine to do so. Caleb looks very peaceful, and his family is surrounding him on the bed. We have moved chairs to the bedroom around the bed, so if you want to come spend time with Caleb, we have a spot for you.
Caleb had another accident during the night, and as we changed him, he didn't wake up. He isn't eating or drinking anymore, and his body is beginning to show those effects. But please know that he is very peaceful, and very comfortable.
Again, we'll update several times today. We give thanks to God for his comfort and care of Caleb - He is doing an excellent job. Caleb is not suffering in any way, shape, or form - and we are peaceful, too, although sad. How awesome - praise God.
Thursday, August 2
11:00 PM - Caleb is now resting comfortably, still needing some oxygen and taking some medicines to help manage the secretions in his throat and to keep him calm. He had a VERY SPECIAL evening, which began a little after 6 PM when some truly incredible firefighters from League City Volunteer Fire Department, Station 1, came to the house with a fire truck and a rescue truck to visit him!!! What a wonderfully special gift. Captain Jack carried Caleb around his fire engine. The Texas heat was unfortunately getting the better of Caleb, but he did flash us a smile as Captain Jack was carrying him around the engine. He received some very special gifts from the firefighters, including a T-shirt which went on him at bed time, as Dad predicted it would. How blessed we are to have such wonderful people who would do such a thing for our son. This evening, as we have told people about the firefighters who came to see Caleb, he gets a bit of a smile going. It was special. Thank you, Lord, for sending such wonderful people to us. And thanks to all these men and women who took time from their lives to make a difference to our son.
Caleb's Aunt Yvonne and Uncle Jorge, and cousins Jules and Marissa arrived this evening. Also, his Aunt Maria and his Grandma & Grandpa arrived too. He has lots of people here loving on him.
We're going to go and lay Caleb down, now - he's presently resting on Julianna. Thank you, Lord, for another day with this special boy. Thanks to everyone calling, visiting, and e-mailing too - we love you all. And David is really behind on e-mail replies now with Caleb being so needy all the time -- but do know that each e-mail is lovingly opened and read, and Caleb is touched, as are we, at the love in them.
Good night to all.
2:00 PM - Caleb is about the same as when he awoke this morning, and is resting comfortably. He is having some difficulty with fluid in his lungs, but we are managing things OK with the help of Hospice and the good Lord so we're doing OK. He has been very alert this morning, and interacted with the numerous visitors who have already graced our living room. He isn't talking, really, but the facial expressions, the smile, the winks, and the hand squeezes say it all. He's 100% mentally alert. Praise God, we and Caleb love all our friends who come to see us. He's now looking like he needs a nap, and is resting on Mom. The nurse is here now, so we may have more news shortly. If not, no news is good news ...
He does appear to be having some conversations with people who we cannot see. He looks in one corner of the room, and mouths words - we can't understand - and smiles broadly as he interacts with "whomever". In a strange way, it is actually comforting. I think God is preparing him for what is to come. How awesome. What a great God we serve.
7:00 AM - Caleb is still fighting, and still with us. My apologies for not getting an update out last night - honestly, I fell asleep on the couch holding our boy and didn't get back to the computer.
He went to sleep about 3 PM yesterday and has never really awoken until this morning. He is now semi-awake, and while he does not speak at all, he is able to hear what we say and squeeze our hands in response to questions pretty reliably. He has once again gazed into our eyes with those beautiful eyes he has, and comforted us. He does not indicate he's in pain, but he is still very out of it and clearly exhausted. He wet himself in a big way in the middle of the night, which is actually very good news since he didn't go all day yesterday and we were concerned his kidneys had shut down. Well, not yet apparently. Once again, all in God's time.
Last night, our many friends converged on our home and brought us immense comfort in our sad hour. We love all of you. Our pastor, Father Albert and Deacon Luis came and prayed with us, and anointed Caleb. It comforted us all. And those of you who have e-mailed, know that even though we're not getting responses out to everyone, your e-mails are being read and very much loved. The wonderful prayers you're offering via e-mail are so comforting to us. We read and pray every one right with you. In the coming days, our family is again coming to see us for which we are also very grateful. We have told Caleb that we know his relatives are coming soon, and that got a great big squeeze and even some lifted eyelids. So he definitely understands.
We know not the day or the hour, this is God's show. But right now, Caleb is very coherent and we are taking full advantage of it. We give thanks to our wonderfully loving, compassionate, and glorious God for his works in deeds in Caleb Joshua.. We give thanks for this time we have. How blessed we all are. More later, this will be a multi-update day.
Wednesday, August 1
3:55 PM - The hospice nurse just left, and she told us that Caleb's lungs are filling with fluid. She says Caleb's body is tired, and is beginning to shut down. I apologize for the rapid nature of this update, but have a few things to go do ... more later this evening. She did say that if anyone would like to see and be able to interact with Caleb, the next day or two might be that opportunity. We are very sad, of course, but relying on the strength God is giving us to get through the day. He hasn't disappointed yet.
Caleb has declined again. Dear friends, may we ask that you pray especially hard for Caleb right now? This disease is clearly hitting him hard right now. Yesterday afternoon, he got into some distress with his breathing. When taking drinks of water, he would literally go blue because he wasn't getting enough air. He's also breathing very rapidly and shallow, and seems agitated - probably as a result of the breathing issue. He also has this incessant congestion in his throat, presumably because of the swallowing issue and the accumulation of saliva. The hospice team responded, along with our wonderfully awesome physician, and they assessed Caleb and provided a comfort plan for him. Thank God for them.
The gave Caleb some medicine to help dry his secretions, and some Ativan to help him with his restlessness and anxiety. Both helped. We have also now placed him on oxygen, and that has helped. Last night, he got a reasonable night's sleep but if we turn off his oxygen or the line gets moved, he will stir. So he needs it. And, so, we just get used to the endless drone of the oxygen machine at the foot of the bed. My, what we can get used to.
Caleb's speech is extremely unintelligible, although don't be misled, he is 100% mentally there. If you tell him a funny story from the past, he will immediately crack a smile. He just can't communicate outward very much.
This morning, he has awoken extremely tired and occasionally gazes off into space for a while. Sometimes, it's hard for him to keep his eyes open.
Something else a bit strange - Caleb has gotten (well, we got it for him since he doesn't move around much) a blue handbag he has had for a long time, and directed that it be filled with certain items. He now keeps it with him. Last night, he slept with it. In the middle of the night, I tried to get it out of the bed but about 10 seconds later I heard this barely intelligible, "Put it back Daddy." The adult in me doesn't want to contemplate the meaning of packing a bag but I am not sure what Caleb has in mind. But it's definitely something. A partial list of the contents: his monstrous key ring (all kinds of things on it, his most prized possession); a vial of Pez; his "Caleb Joshua Ingram Boy" badge I made him; and his "Caleb" necklace that was a gift of a friend.
We will update Caleb's status often. Please continue to pray for Caleb's comfort.
Sunday, July 29
By the way ... here are some pictures!
Caleb had a good few days. Friday and Saturday were pretty good days for him - he seemed to have a bit more energy, and a little spark about him. Yesterday, he actually wanted to go to "Guy Stores" with Dad. We went to Sam's where he had a pretzel and Diet Coke; then, to Circuit City and finally he wanted to go to Fry's where he got an Ice Cream. It's amazing he lasted for 3 stops. But, he didn't request to go to Taco Cabana. He still enjoys it - but seems to prefer having it brought to the house. So, Dad runs out a lot and brings him a Bean & Cheese taco. Today, Caleb has been "off" again; he doesn't have a whole lot of energy, is drooling, and it's very hard to understand his words. He also seems to be staring off more today.
But in any case, he has enjoyed playing X-Box racing for a few hours today - he beat Dad again. Tonight, we're going to a BBQ so hopefully he will be up for that.
Caleb's mind is still 100% - it's just the physical side that's not working quite right. Nonetheless, he had Dad get out his matchbox cars this afternoon, and had a board game hour with Dad in his room. He even wanted to play his John Deere tractor building game on the computer, but with all his shaking, it's hard for him to manipulate the mouse anymore or click the buttons.
Physically, he's about as we described on Thursday, but the congestion in his throat is bad enough it affects us being able to understand him. Without being able to cough and clear it, or swallow really effectively, we're guessing it's just hard for him to get rid of it. He hasn't choked on anything in a few days, either because he's gotten used to his new limits or we have figured out how to deal with them.
Please continue to pray for Caleb's comfort, and for God to continue to reassure him as He has obviously been doing. We just love on Caleb every day, recognizing that each day is a wonderful gift. Hoping you are well ...
Thursday, July 26
Well, Caleb's condition today was about the same as yesterday - but at least he seemed no worse. We are definitely having to be very careful about his eating; he has nearly choked on several different foods, now. His appetite has been very good, though, so no loss of desire to eat!
The hospice doctor came to see Caleb today - she was very kind and nice, and Caleb sort of took to her. I think it'll take another visit and he'll be in good shape.
Dad fixed Caleb's digital camera, today - the one he's wanted to have fixed for months and months. At least Dad FINALLY got to it - and Caleb, as best he could, was excited. He took 50 pictures tonight. He is so proud of it. (Note - it's Dad's old 2 MP Kodak Camera from 1999 - it still works!)
Today, he enjoyed playing XBox with his brother (he loves to play the car racing game), and Dad brought him a Taco Cabana bean & Cheese taco on the way home. So he was happy about that. This afternoon, several of our wonderful friends came to see him and this evening we spent time at the home of another dear friend. Although Caleb doesn't do much anymore, he still enjoys people loving on him :-)
Tomorrow's another day - thank you, Lord, for this day, and for all the things You continue to show us. Especially, thank you for all our wonderful family & friends. Good night.
Wednesday, July 25
It was a tough day emotionally for us all, but the Lord saw us through it with just what we needed to go on - as He always does.
Today, the social worker and nurse from Hospice came to our house and took Caleb into the program. Our little guy is having some difficulties, now, which necessitate having very ready access to medical care 24 hours per day, preferably at home. Caleb is comfortable here, and we just don't want to be in the Hospital if it's not absolutely necessary for something. Our experience thus far is awesome - the social worker and nurse were wonderful. Even the people who came by later to drop off some equipment, and medicines, were tremendous. (We now have quite a pharmacy going).
Medically, the story is about the same as yesterday except the swallowing problems are increasing in frequency. And, there's some congestion in Caleb's throat - not lungs - but it's hard to clear it. Caleb's appetite is still good, and he's still eating and drinking, but has a few coughing/stuck food/etc episodes a day. His ability to cough is diminished, kind of like his sneezing (it's like his body doesn't remember how). The tumor is clearly getting the better of his brain stem, but boy, that brain stem is fighting for all it's worth! Caleb continues to persevere!!!
His voice is harder to understand now, and he really doesn't talk much unless he has to. But he still hears and understands 100%, and his sense of humor is STILL there! When I read him your e-mails, certain things make him smile and try to laugh. And, he finds humor in continuing to scare Mom in the morning, and beat Dad at Monopoly. So he's still Caleb up in the head. I just brought him down two more letters, he smiled.
He isn't upset, angry, agitated, or clearly frustrated - God is talking to him, comforting him, and undoubtedly reassuring him. He really does have a peace about him.
We've had lots of visitors today, and last night, and we are so thankful for everyone! It brings joy to us and Caleb to see you all, so please, if you're near (or far!) and want to come see us, we'd love it.
God keeps giving us just what we need each day to go forward, and we are grateful. No idea how we'd do it otherwise. I'll try to ensure a daily update, as things seem to be changing more rapidly with Caleb now. And I *promise*, pictures by the weekend, dare I promise tonight again ????
We love you all ...
Tuesday, July 24
These are getting harder to write. Our weekend didn't quite go how we planned - but as always, God (and you) were there for us! We had hoped to take Caleb up to Dad's work for a family day, however, Caleb just didn't feel good enough to go. And with the promise of Fire Trucks on the other end, that's really saying something. We ran an errand, were dressed to go, and Caleb told us he wanted to go home and have a nap. That's a much more common thing, these days; he naps at least twice per day, sometimes 3 times. As another surprise, he did not even ask to go to Taco Cabana this weekend. We're worried about him, honestly. So, on the way home from work last night, Dad picked up a Soft Bean & Cheese Taco, Rice & Beans, and a Sprite for Caleb. That's his "usual" (as he calls it) and his favorite. He enjoyed it at home, albeit slowly.
Over the weekend, we took him to the pool on Sunday - his favorite activity, of course - and he did do some "diving in" (from the steps) but wasn't his usual active self. After about 45 minutes in the water, he was so cold he wanted to get out and wrap up - and asked Dad to take him home for a warm bath. He was ice cold, but the water was really kind of warm, probably low 80's. Based on that, plus his recent difficulty being outside in the Texas heat, we're wondering if he's not having a problem with controlling his body temperature. His skin is often very cold - but he never complains of anything.
He did enjoy getting to meet some new doggie friends over the weekend. His new friends Ms. Patty and Mr Al brought their dogs, Kramer and Nala, to see him. Although he couldn't get up and romp as he would have liked to have, he did enjoy feeding them very much. And then, to top it off, he got to feed Ms Dobson's dog, Buddy, cheetos. He does love dogs so much.
His speech is very difficult to understand, now. Sometimes it comes through clear, but it's a real struggle for him and he does get frustrated at us not understanding. We are watching the eating/drinking closely for signs of issues there - nothing clearly stands out, yet. Just slow eating, very purposeful.
Dad has been able to get home mid-afternoon (3-4 PM) recently to spend more time with Caleb, and he seems to enjoy that. Monopoly is a favorite passtime now, as it fits Caleb's physical limitations a bit better. He does have right side arm shakes (his good side, too ?!) that makes it hard to put the money in the bank (he's the banker, of course) but Dad can steady his hand and so it works out OK. Caleb and Dad's game has been going for 3 days, now - and Caleb is whooping Dad badly (fair and square, too!) He buys just what he likes (owns all 4 railroads of course) and Dad keeps landing on them. So, Caleb is bankrupting him $200-$400 at a time. We had to consolidate Caleb's cash because he had most of the $100 bills in the game!
We remain ever grateful to God for these special days with Caleb, and we spend the most time we can with him. Thankfully, everyone is here with him (now that sister moved home from Austin); the extended family comes often (thanks, guys); and all our wonderful friends (that's YOU) stop in and love on Caleb (and us), call us, write us, and even bring us food. And most importantly, you pray for us and Caleb - fervently. We really don't know what to say other than "Thanks" but it seems so woefully inadequate.
By the way - when Caleb receives e-mails, Dad prints them off, puts them in an envelope, seals it, and places it in the mailbox outside Caleb's door (yes, he has a real US Mailbox on a post outside his door -- a Christmas Gift from Santa!). If Caleb has much to say, Dad writes it down and tries to reply as best he can from what Caleb said. Caleb is SO excited to hear them, but unfortunately, doesn't say much these days. He smiles a lot, though. Thanks for sending them.
We'll post some pictures perhaps tonight or tomorrow; we'll see how Caleb is. God bless you all - have a great day.
Saturday, July 21
Hello everyone - things continue about the same with Caleb - not much better, but he's still in reasonably good spirits and finds humor in things. He has pretty much accepted the drooling thing now, and just asks for napkins/towel/whatever. He really doesn't much try to walk anymore. His speech is pretty poor, but still, about 95% intelligible to us since we usually know what he's talking about or likely to talk about. He is extremely needy, and pretty much needs someone occupied with him 100% of the time (versus playing by himself). So, not much other than CALEB happening around here!!!
Obviously, not the best story physically. However, mentally, he's still sharp Caleb; still laughs at things, still is amused by scaring Mommy, or clothes wars with Daddy. Praise God, he has shown no real signs of eating or drinking problems - which are the ones we do NOT look forward to hopefully never. On Thursday, Dad took a bit of time off in the afternoon and took Caleb to Taco Cabana. It was the first time since he was a baby that he had to be fed. His arms are so jumpy - something (well, we think we know what) is causing him to have tremors - so it's hard for him to get food from the plate to the mouth without it flying everywhere (which, of course, he finds hilarious - praise God he finds some humor in this whole thing). Dad isn't much for that, however, so we feed him.
Some news: the drug study which we hoped to get Caleb involved in is now on hold. Caleb's blood pressure is borderline high - and, the drug under test is known to cause hypertension. So, the Doctors don't want us to do that right now. They have referred us to an excellent doctor at Texas Children's who has some expertise in Hypertension so that we can understand the root cause and, if it's treatable, we might be able to go forward with a drug study. Caleb had a renal ultrasound last Friday and some blood pressure measurements manually - which, thank God, were normal. This remains in God's hands, so we'll leave it at that. We just go where we are led.
We plan to take Caleb out for a pretzel at Sam's today - Mom is going to come to guy stores today!!! And then, perhaps up to David's work where there's an open house today - Caleb wants to go - we'll see how he wakes up from his nap (he's already asleep again, at 10:34 AM). If we didn't mention it, he's sleeping a lot more now; also, not a good sign. Tonight, perhaps a healing service they're doing at a Church in Houston ... we'll see.
Thanks to everyone who is coming to see us, and supporting us. We know that we say it a LOT here, but really, you all have no idea how much your support, love, and prayers have meant. We just can't say it enough. God gets us through each day, and often times, it's through you. We are so grateful.
Have a wonderful day.
Wednesday, July 18
Caleb was having a pretty hard time yesterday physically, clearly, yet another digression. It's now about impossible for him to walk without holding on to something/someone pretty hard. And, he's drooling a lot - to where he gets frustrated and requests tissues. This is a hard thing to watch; yesterday, he wanted to get into his Spiderman tent and so he got off the couch and fell flat on his face in front of the tent. It broke my heart, as he started to cry and it was one of the first times I felt as if he - himself - was very saddened and discouraged over his physical degradation. Caleb has always just gotten up and gone on, but yesterday, it seemed almost as if he was TIRED. It was probably an emotional event for us both. He has shakes, too; sometimes, it's like his head is shaking "no" - so I am sure the signals his brain is sending to his body are being quite corrupted by the tumor in his brainstem. I guess I have to admit it does make us sad to watch this.
So, our prayers today are for strength and perseverance. It's no different today than it was yesterday - God is wholly in charge, and has always made the best choices for Caleb and we know will continue to do so. It is clear how much HE has accomplished through this otherwise awful disease in Caleb. And that will continue to be our source of strength and joy. Please Lord, keep Caleb's spirits high and don't let him get discouraged by the limitations he now faces - don't think I can bear to watch the look on Caleb's face like he had after the Spiderman Tent fall too many times.
And thank you, all our friends and family, for lifting us up. You give us strength each day! Have a good day.
Tuesday, July 17
Oh, goodness - did not mean to let so many days go by without an update. Please excuse that! Last week was very busy for us, between Dad's work activities as well as the family arriving on Wednesday as well as our trip to San Antonio over the weekend. As usual, time had its way of quickly disappearing.
Physically, Caleb is about the same. Unassisted walking is pretty much out of his range of activities now - he needs to be carried, strolled, or, if he'll do it, use the walker. He isn't much in for the walker - but with it, he gets around fine. He does drool a lot, and his speech is slurred and slow but still clearly intelligible. The left side weakness is still pronounced - his smile is now one sided, which is both cute but at the same time, a stark reminder of what's going on inside his head. As I've said many times, it's hard to watch Caleb in this physical state. The comfort comes from the fact that he's in no physical pain, that he still has a great sense of humor inside him, and that he's simply very accepting of everything happening to him and asks really no questions about it all. I do think he is getting all the answers he needs in just the way he needs it from God, who clearly has a dialog going with Caleb --- at least judging from things Caleb says sometimes. So, we go on.
Last Wednesday, Aunt Pam, Uncle Bob, and his cousins Robert and Victoria came to visit us! We had a very nice visit. They arranged for Caleb to have a fun boat ride on Clear Lake (I'll post some pictures perhaps tonight) and went with us to San Antonio this past weekend to visit Aunt Yvonne and Uncle Jorge and the girls. And Caleb had a great time with the family over the weekend! He swam, and swam, and played with the dogs, fed the dogs, and was doted on by his cousins - all the reasons he loves to go see them. We've realized the swimming pool provides a good respite for Caleb, because it removes the limitations that gravity is placing on him right now - he can move about and have fun, without worrying about falling down or running into something (plus, it completely obscures the fact that he is drooling!). Swimming is definitely one of his favorite activities now.
On Thursday, Annette took Caleb to Texas Children's and met with the Phase I Clinical Trial teams there. If all continues to go as planned, Caleb will begin a new drug study with a class of drugs known as antiangiogenics - think I spelled that right - basically drugs which aim to disrupt the growth of blood vessels in the tumor. The team wants to see if this stabilizes his tumor in any way, or even causes some signs of regression. Again, this is not a cure. If only such a thing existed. This is to see if we can "make a dent" in this beast and slow it down / stop it for a time / etc. Wouldn't that be great. And, also, to allow Caleb to continue to contribute to the body of knowledge of this disease in hopes that in the future, there will be more viable treatment options. I'll write more on this topic in the coming days - Caleb is just getting into it now, doing preliminary labs/scans, etc. More to come.
And, as always, God continues to bless us and Caleb with good days, and lots of emotional support through the things we see and the people He sends to us. All our prayers are being heard - Caleb is comfortable, we're doing mostly OK, and the blessings are abundant. Thank you, Lord!
Pictures, soon, as we have some good ones of Caleb over the last week. Have a great day.
Monday, July 9
To our dear friends,
Thanks, again, for dropping by to check on Caleb. He is definitely struggling with this thing, there is just no question about it. What in April emerged as just "slowness" in Caleb has progressed into genuine confusion at times and strange substitutions of words that don't make sense. It's almost as if his brain shorts out, at times. Watching for obvious seizures, but seeing none that I recognize. Still taking Trileptal to guard against that. Caleb does fall down a lot, and walking by himself now is hard. Annette commented today that he did really well walking at Physical Therapy with the aid of a walker --- which he does have, at home, but doesn't like to use. Probably our fault for carrying him everywhere :-)
He's solidly in the two-a-day mode (naps, that is) now; and my, how I do wish I was talking about athletic practices. Caleb would be SO athletically inclined, much unlike (at least) his Dad. And he does love baseball, soccer, football - and the serious, tackling kind - but that's pretty much out of range for his current abilities due both to stamina and, more recently, his coordination issues.
But, as we've said, he just troops right on and makes the best of everything. I really wonder what he thinks inside, sometimes. His spirits remain good; tonight, he wanted to sneak up on and scare Mom twice. He about split a gut open, laughing hysterically at something or other that happened in the midst of that activity. So he's all "Caleb" inside.
Today, Caleb enjoyed visiting with our good friend Andrew, who in regular life, protects us all as a US Navy Pilot in Florida. And one reason he came here was to see Caleb, God bless him. Caleb just loves him - he thinks the fact that he is a pilot is just cool - of course, Andrew being such a kind soul and so good with Caleb has probably a lot to do with it, too. Thank you, Lord, for sending such people to our son. We are so blessed.
Aunt Pam, Uncle Bob, Tori, and Robby will be here on Wednesday. Caleb will be so happy to see them, too.
We will try to keep updates coming about every other day or so. God bless you all.
Saturday, July 7
First off -- we added some photos on the pictures page -- have a look! Now, for the update ...
It's tough to say that Caleb has remained the same over the last few days because honestly, it seems like he's slowly declining. As much as I want to say it's my imagination, I don't think I can. We've noticed that he seems to keep a larger stash of food in his mouth for longer time - some mouthfulls can take a few minutes to be processed - and his speech may be slightly worsened. His balance continues to be a struggle for him. Although he can walk unaided for short distances, it's a rough gait and he grabs hold of nearby things. This has resulted in his fingers getting smushed at least twice in various doors - fortunately, not seriously - but we definitely are more careful when closing doors around here. He also has problems sitting unassisted - he tends to fall over at times. Definitely, this tumor is interfering in the brain's normal functioning.
But, nonetheless, Caleb troops on, wanting to do everything he ever did. Today, he wanted to play soccer out front - only lasted a brief few minutes. Wants to ride the tractor ... once something he could once do in any shape, but he spent more time sitting on it today then riding. We had a late visit to Taco Cabana today - dinner, in stead of lunch - and he perked up quite nicely after that! Don't know if he was going through Cabana withdrawl or what, but the dinner there definitely raised his spirits and he did pretty well the rest of the night. His spirits are good, praise God.
We met with the doctors at Texas Children's on Thursday. They all thought he looked good - I guess that's considering what he has. Compared to the "old Caleb" he's quite different. After talking with the doctors, we have decided to not pursue the Temozolamide -- this was the chemotherapy we were considering. We just did not want the toxicity for Caleb. Even understanding that it's perhaps the most mild thing given, it does tend to depress the platelets and blood counts. Even one more trip to the ER is too many. It was never held out as a cure - only a potential life extender of unknown duration - but we have decided to not do that. I pray it's the right decision. Don't know if it was a sign or not - but while waiting in the Infusion room at Texas Children's on Thursday, before seeing the doctors, a girl seated nearby us was violently sick to her stomach. It was tough to watch, such a young girl so sick from the treatment for this awful disease. We just don't want Caleb going through anything like that for only the potential promise of a few weeks, or maybe at the outside, months. Again, we pray we have made the right choice for Caleb.
I would never pretend to guess God's plans - but He's laying on my heart the need to enjoy every moment with Caleb. So, we are not losing a single one. We do pretty much whatever Caleb wants, whenever, within reason. Tonight, we drove a few miles to Buc-ees, in the pouring rain, to fill up the big soda mug, just because he wanted to. He was so excited, and it only cost 75 cents. Simple pleasures; thank you, Lord. As always, we invite everyone to call, write, or drop by, if the Lord is calling on you to drop in on Caleb.
This week, Aunt Pam, Uncle Bob, and cousin Victoria are coming. Caleb is so excited. We are, too, it'll be great to see them.
We are OK, as is Caleb - God has us all well in hand. He takes such good care of us, mostly through YOU, and we are grateful. God has blessed us with the privilege of seeing some of what He's doing with Caleb, and it comforts us to know that there is a bigger plan and He is in charge. That's what makes this bearable. But sometimes, it's tough to see the bodily "here-and-now" effects on Caleb. Strengthen us, Lord, to see things as You do. Amen. And goodnight.
Monday, July 2
Well, Caleb definitely enjoyed his weekend! His cousins, Julianna and Marissa, and his Aunt Yvonne & Uncle Jorge surprised him with a visit! They played, and played, and played with him of course to his delight. They even joined him for lunch on Sunday at Taco Cabana, and for a trip to Sam's on Sunday afternoon. Caleb was in good spirits. Of course, he cried his eyes out when they left - but we promised him another visit again soon. Thanks to our San Antonio family for coming this past weekend - it was a long drive for a few days but we were glad to see them.
Medically and physically, Caleb is struggling a bit. He has a difficult time walking without assistance because of his poor balance - he falls a lot without help. We sit close to him, because his balance can cause him to fall over sometimes. Drooling off and on, and slow speech. The left side weakness is there, too, but seems less of an issue right now.
Spiritually and emotionally, Caleb is doing fine. He is usually pretty happy (probably because someone's always playing with him!). He accepts much of what's going on right now, and just keeps on going. What a trooper.
I wrote the last update while at BWI waiting to fly home - so it as a bit abbreviated as the laptop battery was on its last legs. Let me say some more about Caleb's NIH visit, and the week preceding because I forgot a few things.
First - the week before NIH - Caleb went to bible school! Again this year, he just loved it. He loved being in Ms Barbara and Ms Heather's class, and he came home singing "Father Abraham" and with other nice stories. We actually rescheduled our NIH trip a week back so that Caleb could go - this is his second year, now, and he loves going. Swim lessons went well, too - Caleb is getting ever better in the water. He continues to LOVE LOVE LOVE swimming. Over this past weekend, we went to the pool at Aunt Donna's house and he swam his little heart out. Of course, having his cousins to play with him helped, too!
Second - Caleb got to meet and spend a whole day with his Aunt Elaine! She came and visited us while we were at NIH. Caleb really took to her, and enjoyed getting to spend some time with her. She also brought him a wonderful "Care Bear" pillow which he loves. It went with him all day at NIH, and he got to sleep on it the whole way home. She drove 3 hours to see us - back and forth in one day - and we appreciated it. We also enjoyed the visit.
Wow, that was a lot. So in summary, Caleb is having some physical struggles, but he is mentally well and had a good weekend.
Today, he actually seems to be on a bit of a physical up-swing. He jumped in place (hasn't done that in a while!) and walked unassisted for a short distance. AWESOME! Thank you, Lord. You knew our hearts needed that boost today.
Thanks to everyone for all your wonderfully encouraging e-mails, and your continuous prayer. We thank God for you all every day. Hoping you're having a good start to the week, and looking forward to a great 4th of July.
Thursday, June 28
Dear Friends & Family (that covers everyone),
Well, here's the update that I hoped I would not have to write for a long, long time – if ever. As you know, we've been at NIH the last few days for the monthly tests. Here's what we have learned.
Caleb's tumor is progressing. While it is no larger in outer circumference, there is clear evidence that it is active and developing further. The various scattered “white spots” around the tumor are beginning to come together, indicating the development of a dense area. You'll recall we'd been watching the “good to bad” chemical ratios – the ratio has further increased, to 5.3, in the unfavorable direction. There is also the complete absence of lactate, which is formed when cells die. So nothing is dying – it's only growing. So, with clear evidence of activity, the absence of indicators of dying cells, and Caleb being clinically worse, the conclusion is that the tumor is continuing to grow.
So, then, we must conclude the Interferon is not working for Caleb. We will therefore discontinue the weekly injections.
Caleb is definitely declining clinically – he is really not using his right arm, now. His balance is not very good, either; he sways his torso (even while seated). He falls over sometimes. His walking is very poor, apparently because of the general left side weakness. Today, we learned that the body's “natural” system of tendons, muscles, and bones has a natural “resting” state which is overridden (moved) by neuromotor inputs from the brain. Caleb's pathways which provide these inputs to his left side are apparently hindered by the tumor, so they're not really being sent well. This is making it hard for him to walk. In fact, the doctors at NIH have now given him a walker to help get around. No lie, this is hard for us to watch. When we get back to Houston, we'll make appointments with the physical medicine doctors at Children's since Caleb needs some hardware for his legs, etc., to help him remain functional as long as possible.
Dr Warren told us that at
present, there's really no other study medicines which she feels would be
effective for Caleb. We certainly trust her opinion. She told us that one
possibility is for us to begin a chemotherapy treatment on Temodar – something
commonly done, based on my Internet research. It's FDA approved for treatment of
adult gliomas. Based on the fact that it's generally well tolerated in kids –
most do not get sick – we have decided to begin that. Our goal has always been
quality of life for Caleb, and the Temodar offers possibility of some life extension with a good quality of life. If we
see that it makes Caleb sick, we will probably stop. This is no cure. Caleb's
fine doctors at Texas Children's will help us with this course of
That's all that we will do. As we've said before, this is in God's hands, and it's the best place for it. We'll just continue to enjoy Caleb every day that the Lord lets us have him. Dr Warren indicated that it would be useful for her to continue to see Caleb now and again, as well as scan him, to see how the tumor progresses. We have agreed to return to NIH perhaps every 6-8 weeks for this purpose. Another of our goals has always been to make whatever good we can from Caleb's illness --- and if there can be more learned which may help other kids in the future, we are only too glad to do it. So we will keep in touch with Dr Warren to ensure that we (Caleb) helps her work in any way we can. She, and all the folks at NIH, have been nothing short of amazing. It's good to know there are Doctors in the world, like her, dedicating all their energy to beating this thing.
Nobody, other then God, knows how long Caleb has. Dr Warren wouldn't even guess since, as she says, this tumor defies logic in the base case but furthermore, Caleb has been a definite individual case of himself.
So, we're heading home. We'll continue to pray for Caleb's comfort and good life, and of course, we won't stop asking for our miracle! Feel free to call us, write us, come see us, or all of the above. We love you all, and your support of us throughout this has been constant and incredible. We are so grateful. May God bless you all.
As I write, our 7:30 PM
departure from BWI has been delayed to almost 11:00 PM due to the heavy
thunderstorms. Lord knows what time we will be home. But in the scheme of
things, it seems a relatively minor event in life.
Another update in a few days, or as things change. Good night.
Sunday, June 24
We had a very nice weekend. From a health perspective, Caleb definitely has his issues - there is clear left-side weakness, sometimes where the limp is perceptible. He has a tough time getting up from a seated-on-the-floor position (no issues from a chair) - can be interesting to watch. Now, true, he is 16 pounds heavier due to steroids - but he has clear mobility issues. But he seems to FELL well, has a good sense of humor, and I believe is generally in good spirits. Praise God, that's wonderful.
We did a lot of house chores this weekend, and as always, Caleb was right there wanting to help. Even helped me change oil Sunday afternoon. During the oil change, he got up from his chair in the garage, came over to me and throws his arms around me --- he looks at me with those wonderful eyes and says, "Aw Daddy, I really love you." Thank you, Lord, for such an awesome little boy.
Twice to Taco Cabana this weekend - amongst the typical other "Guy stores." Caleb rarely walks around anymore in the store, unless there's something specific he wants to check out. Mostly, it's between riding in the shopping cart or me carrying him. Today, he seemed to be cold a lot ... even took a blanket with him.
This week, we travel to NIH for our monthly visit. Doing a Tuesday-Thursday trip this time instead of a Monday-Wednesday one. Please pray for us during the MRI on Wednesday. Given what we've seen over the last weeks' time, I am worried about what this scan may show. But again, God, this is your show and not ours .... we know you "got it."
Another update probably Tuesday-Wednesday timeframe, unless something warrants it earlier ... goodnight!
Friday, June 22
It's been another blessed week for the Ingram household. Caleb has had his share of issues associated with the darn tumor, but, he has maintained a great attitude and seems to be generally happy. After a great weekend last week, Caleb started off the week a bit "off" - he had definite left side weakness, and even did a bit of the dragging of the left leg around with him for a bit. He's had several significant drooling episodes this week, but just seems to go on about life as if it's all normal to him. Sadly, it is! However, he ended the week on a strong note - moving everything fine, not drooling too bad, and hanging in there like he always does.
As we've said, he does move around slowly, has a hard time getting up by himself, sometimes falls over if he's sitting on the floor and leans backwards. But, he just gets up, and goes on about things. His sense of humor is ever present, he laughs at things, loves to play with everyone, and seems to be in no pain or discomfort whatsoever. Praise God, that's a wonderful blessing.
He wants to be as active as ever ... wants to play ball, wants to swing, wants to build, wants to jump off the stairs like he used to, wants to swim. So no lack of desire! Just, after a few minutes, he's ready to rest or do something else. That's OK. Thank you, Lord, for all the wonderful things you keep on showing us.
We remain ever thankful for another week with Caleb ..... will drop another update out on Sunday evening. Check out the PICTURES Page! Yes, I know it's been a long time ... sorry about that. You'll find a few new pictures there.
Sunday, June 17
So, one could surmise that we've had a fairly uneventful week given the lack of updates this week! That would partially be true; the rest of the reason is that Dad was travelling Tuesday - Friday, and we were all travelling on Saturday! Been a busy week --- but Caleb had a fine week. Dad went with Christopher to college orientation @ Texas Tech this past week, so Caleb, Mom, and Sister spent a bunch of great quality time! He did great.
Caleb continues to be relatively stable, in this again newer paradigm. He gets around slowly and carefully, but steadily. He definitely has left side weakness, but it's no so pronounced that he drags his leg or anything - just definitely there. Favors the right, etc. He is in excellent spirits, has enjoyed his swim lessons, helped Mom & Dad with some home repairs, and is enjoying his current favorite passtimes - playing doctor on one of us, playing Monopoly with Dad (he's ruthless; he also likes to keep the Community Chest and Chance cards instead of putting them back), and "building" (playing with stuff in the garage). Of course, trips to Taco Cabana and good music on the car CD player keep him chipper, too.
The steroids weight, which so quickly shed once before, is sticking with him - still the same 50 lbs even more than a month post-steroids. His appetite has decreased from the steroids peak, but the weight has not. Who knows. He sometimes has trouble thinking of what he wants to say, has some tremors in his arms mostly, and is just in slow gear. Some of this is Trileptal; the rest, well, probably the tumor.
But thankfully, God continues to be at the helm of this vessel and blesses us with some wonderful revelations along the way. We only wish the revelations were under a different context, but He is God, we are not, and maybe this is the only way. We just go on each day, thanking God for all the wonderful time with Caleb, and thanking Him for all of our wonderful friends and family who lift us up each day in prayer, call and e-mail us, drop by, and generally support us. Have a wonderful week ...
Sunday, June 10
Well, we had a very nice weekend, thanks be to God. Dad and Caleb spent literally all day Saturday disassembling the clothes dryer down to a pile of nuts, bolts, and circuit boards trying to figure out why it wouldn't run. They did; a soldered connection on one of the logic boards was loose. Caleb soldered it back up, and dryer works like a champ again. Of course, tearing apart the entire dryer mechanically to find one bad electrical board was unfortunate; but Caleb had a ball assembling everything again with Dad. And Mom appreciated the entire living room being temporarily filled with various parts and pieces of the dryer.
After a nice Mass at Church on Sunday, Dad and Caleb spent hours playing Putt Putt Golf, arcade games, sliding on the 2-story slide, etc., at the local Putt Putt games place. He had a great time, but didn't want to leave (Caleb, that is :-)). Swung by Taco Cabana for a late lunch, then back home only to head to the swimming pool to close out the evening.
Caleb is doing pretty well - definitely a bit weak on the left side, but he's compensating for it well and he is not stumbling or losing balance at all right now. The hands trembling is definitely perceptable, although not severe, and he had a bit of a drooling issue this evening. But that comes and goes like the rain, so who knows?
The staph infection in his incision continues to heal, we think, although it still doesn't look the best!
Lord, thank you for a wonderful weekend with Caleb - we continue to see, every day, the wonderfully special signs and messages you send us in this little boy. Prayers tonight are to continue to be reminded that there is a great purpose in this journey - and the ship we're on is being piloted by the Master. Something I just remembered: Caleb drifted off to sleep the other night reciting the first line of the Gloria over and over ("Glory to God in the Highest, and peace to His people on earth"). Interesting bedtime thoughts for a 4 year old ... yes, I'd say there is definitely a plan here. Praise God.
And good night.
Saturday, June 9
Oh goodness ... the last few days got away from us with no updates! That would've normally been fine, but given what the last update was, we're SO SORRY! Here is our scoop.
We were discharged from the ER on Tuesday night (well, Wednesday AM!) after intravenous antibiotics, and sent home on oral ones. $70 worth of oral antibiotics! Upon trying to give Caleb the oral antibiotics on Wednesday, he vomited profusely. Thinking it was a fluke, tried again --- guess what happened??? I have to admit, the taste was absolutely awful. I think the flavoring made it worse. So, the doctors gave us a different kind of antibiotic. This one cost $5. So, the $70 ones are going down the drain ..... and we're using the $5 one ... sorry, I'll move on! :-)
Caleb's infection seems to be improving, and he is remaining active. Swimming, helping Dad, playing --- he's doing all the things he normally does, just in slow gear. His balance continues to be OK; a bit of drooling now and again; eyes look pretty decent most of the time; a bit of left side weakness. Otherwise, doing OK.
I think we're going to go play putt-putt tomorrow ... he's asked 5 times.
We are so grateful for these days with Caleb. Thank you, Lord!
Tuesday, June 5
10:25 PM -- OK, here we are, Room 23, Texas Children's ER. We haven't been in this room, before - kind of nice to be on the upscale side of the ER :-) So, here's the scoop. They believe Caleb has a staph infection in his incision. It doesn't appear to have formed a serious pocket, yet, and chest x-rays don't indicate that it's progessed anyplace beyond the surface. So, they don't need to "clean out" anything, and they are content to treat him with oral clindamycin on an outpatient basis. They plan to give him the first good dose of clindamycin intravenously, and then send us home (woo hoo) to complete the antibiotics orally. They said to keep a good watch on him, rest assured we will. And, they said Caleb can keep up with his Swimming Lessons! He will be so happy. So that's that, we hope, expect we'll be home at least by 4 or 5 AM. :-) We also got to see our good doctor friends at the ER, and this time was special because Dr Alonso, his resident from the 10th floor stay in April, is now doing a rotation in the ER and was his doctor tonight! And Dad got to grab a bite at Chipotle - he was happy.
So, now that the medical issues appear contained, let me share some of Caleb's day - he went to his first Swimming Lesson today! He was enrolled last September, and went a few times, but then ... well ... you remember. So, this is round two. When Dad came home, he told him how much fun he had at swimming, how he listented to his teacher, and how he was so happy that his friend Mary Ella is in his swimming class!
Caleb does seem improved from the issues he was having over the last several days. If these are really "microbleeds", as we were hearing at NIH, then perhaps he had another round of them - they did their thing - and now we're healing from that. Who knows. Never had any of the space-out episodes from April.
Thanks to everyone for your continuing support, prayers, love, and kindness. We are so blessed to have you! Unless something happens to warrant it in the meanwhile, I'll drop another note tomorrow ... good night from Rm 23.
7:30 PM - From David ... I'm on my way to Texas Children's. Annette, Caleb, and Natashia are already there at the ER. Remember that wonderful port that we installed a few weeks ago in the "what-turned-into-major-production" surgery? Well, one of the incisions in Caleb's chest is infected and getting worse by the hour. Intravenous antibiotics likely, potentially a "cleanout" (?) and maybe overnight stay ... will update more as I get there and learn it. Caleb seems in good spirits. Your prayers are very much appreciated, as always! If we wind up overnight, I'll post something before bedtime.
Monday, June 4
Well, since I posted such a "so-so" update yesterday, figured I'd better update more often! Caleb continues to be about the same - no worse, and - maybe - not so unsteady on his feet. I didn't notice him wanting to stumble at all today, but then again, I didn't see him as long as Mom did. His speech isn't that great, but a zillion times better than what we saw in April when he had his issues and always intelligible. He often can't remember what he's trying to say ... but people on Trileptal have reported the same thing (maybe we're rationalizing? :-)). But, here's what's important ... he is definitely HAPPY, enjoying putting makeup on Mom, playing Thomas with Dad, playing baseball in the front yard, going to guy stores on the weekend, and he's eating well (but not too well, if you know what we mean!). Tomorrow morning, he starts SWIM LESSONS. He is very excited. We'll update more in a day or two, and also, I know we're overdue for pictures! Either this week, or over the weekend. Good night, and thanks for all your prayers!
Sunday, June 3
We probably could use "extra strong" prayers right now. Caleb is clearly having a hard time with some things, today - he has some obvious balance issues, and while he's not exactly falling down, he definitely is having some issues with stability. He is irritable, and seems tired. There is obviously something going on in his head, but only the good Lord knows what. His speech is slowed, but then, it really has been since the Trileptal and I'm not sure it's really that different from a week ago. He seems a bit distant, too. From our perspective, we definitely know God is in control, and honestly, that brings SO much comfort. But it's also sometimes hard to watch Caleb this way. Thank you ALL, as always, for holding us up. We are so thankful and grateful. Have a great day.
Saturday, June 2
Wow -- a week since we last updated. Sorry about that; it's been a combination of the Memorial Day holiday, housework, and maximizing time spent with Caleb. Let us bring you up-to-date on Caleb's life ...
We have had a really nice week with Caleb. He's felt good, and been very active. He has been swimming just about every day, with Mom or Dad, and has spent lots of time swinging in the back yard and riding his John Deere around the front. In the evenings, he's wanted to play a lot, and, has been his usual jovial - if not somewhat feisty - self. We have enjoyed him. The steroid weight is slow coming off this time around; he's only dropped a few pounds since ending them quite some time ago, now.
This morning, he & Dad did guy stores and the Taco Cabana lunch; spent time at the pool this afternoon, then to Barnes & Noble and Starbucks for coffee and a good book. We read a zillion books at B&N.
Honestly, though, Caleb is slow. He seems to be getting around more slowly and tenderly, and there is definite weakness on his left side. He even skinned the tip of his big toe pretty good at the pool on Friday from a bit of dragging his foot around. So, we know something is going on, but who knows -- maybe more microbleeds, maybe this awful tumor pushing on something, just don't know. But Caleb's quality of life continues to be good, so we thank the Lord for that and know that He will work the rest of it out for His Glory. Tonight, we pray for strength - the strength to walk the journey laid out for us, and, to continue to find the blessings along the way. Thank you to all who call, e-mail, stop by, drop a letter in the mail, and pray. We are so grateful; you give us strength!
Sunday, May 27
Caleb had a great day, today. He made the most of playing with his cousins this morning until their departure for a week at swim camp; then, he wanted to play outside for a bit. Thank the Lord, the swimming pool is now open so we spent a whole TWO HOURS swimming in the water! Caleb did a fair job not sinking straightaway to the bottom when we let go of him - he's starting to get the idea of swimming. He's starting swim lessons this week, and he's so excited to begin. Dad mowed the lawn this afternoon, and Caleb enjoyed using his John Deere to pick up loads of grass when Dad dumped the bag (he brought them around front and dumped in the driveway!) and also, got his hand toy lawn mower out and followed Dad around for a spell. When he was just too tired, he sat down and watched. It reminded me of the first time Caleb did that, probably 2 years ago, where he followed me around with the toy mower as I mowed. Thank you, Lord, for bringing to life once again such a wonderful memory. What a blessing ...
I think of where we were the first week in April - what were were thinking and dealing with - and I give thanks to God for these weeks with Caleb since then. They are special, indeed. He's feeling good.
Happy Memorial Day everyone. Thanks for all your wonderful e-mails, letters, and calls. How could we ever thank you???
Saturday, May 26
Caleb has had a really nice several days. He has been full of energy, even wanting to chase Dad (who was riding a bicycle) around the circle on foot! He has wanted to play football again, and the naps have decreased. This is so nice to see. Of course, there are the constant reminders that things are different - the residual weight from the steroids, the slower speaking/moving/thinking that the Trileptal induces, and the eyes which were of course one of his first symptoms. But he is happy, feeling well (I think), and generally back to the old, witty, funny Caleb.
Today was "Guy Store" day, and we only got to one guy store - Sam's - because Caleb wanted to play so much at home this morning. But we shopped while enjoying Prezel and Diet Coke, and then made the weekly pilgrimage to Taco Cabana.
This is a special weekend for two reasons - Aunt Yvonne, Uncle Jorge, and the girls are here - and, big brother Christopher graduated from High School today! We are very proud of Christopher. Caleb, while not completely understanding the "High School" concept, took nice pictures with his brother in cap & gown. We plan to just hang out for the rest of the weekend.
As always, we remain so very grateful for all those praying for Caleb and us. Blessings to everyone for a safe, happy, and special Memorial Day weekend.
Tuesday, May 22
It was hard to leave San Antonio this weekend; we had a great time, and Caleb cried himself to sleep as we travelled down 1604 (although he did sleep for 100 miles of the trip home!). Today, he was in quite a good mood. He wanted to play, play, play. He played a lot with Big Sister today. When Dad came home, he wanted to swing in the backyard; then he wanted to ride his John Deere tractor and have Dad chase him. Then, he wanted to hit the ball off the t-ball stand and run bases (although a bit slowly!). At bed time, he wanted to hear stories (first time in AGES) and then he about split a gut laughing at whatever we said that was funny to him as Mom & Dad put him down. I think he felt good. It was great to see. It's times just like this that I remember how awful this disease is. God, continue to give us strength to persevere on this journey you have laid out for us; we know that you're holding Caleb (and us) close, and we also know this is much better in your hands than ours ... amen. Goodnight.
Saturday, May 19
Well, we're in San Antonio for the weekend. Caleb is so excited to see his cousins, and his Aunt Yvonne & Uncle Jorge. And, as a bonus, Aunt Maria is here! The weather is a tinge cool, but Uncle Jorge lit the heater on the pool this morning so hopefully, we'll be in the pool this afternoon. The sun coming out from behind the light clouds would be a bonus, too. So right now, we're having fun hanging out and waiting for the girls to come back from their swim meet. We've played concentration, played with Gino & Luigi (the dogs) and Caleb is now doing work on the computer. He's announced that he "can't work with all this noise!" so we're now quiet :-)
Caleb is feeling good, I think, although clearly operating in a slower gear. His spirits are good, and he's really looking forward to swimming today. Maybe Uncle Jorge will even "throw down on the barbie" (as Caleb says). I think we'll get to Taco Cabana this afternoon, too, which will further boost Caleb's spirits! Thank you, Lord, for another good day with Caleb.
Wednesday, May 16
Well, today was a tough day - on both Caleb, and all our emotions. But God, and your prayers, helped us through it and now we're at BWI waiting for our 1-1/2 hour delayed flight home (weather). Everyone is fine now, just still trying to process everything we heard today. Here's what's up ...
Caleb's Port. Does not work! This is the port that we had (what turned into) major surgery last week to fix, remove, and reinstall - the one in his leg. Well, it won't draw back blood. It does flush forward, so that's something - but Caleb went through an incredible experience for another 1-way port. It also suggests this port may be clotting off, as well - more to come on that one. But the poor thing, he got stuck twice as Mr Alexis (his great nurse) tried to get blood return. So, our day started off on the wrong foot as Caleb hollered a lot more than normal. His Texas Childrens' doctors were discussing an anticlotting compound - but wanted to talk with Dr Warren @ NIH - more to come on that, read on.
The MRI Scan. Well, the tumor appears no larger on the scan - so that's good - however, there are two very bad things that came off the MRI. First, the cholene:NAA ratio - used to show the ratio of bad to good chemical in Caleb's brain - spiked up for the first time, suggesting active tumor. It had been stable around 2:1 for many months, and it jumped to 5:1. It's still an experimental indicator - part of what this research is working on - however, it's not a good sign. Next, all the troubles we were having in early April, with Caleb having episodes we wondered if were seizures - well, we may have more information now. There are many, many spots in the back part of Caleb's brain - where the radiation passed through - that look like areas where the brain was bleeding. Dr Warren called them "microbleeds" and they are a likely product of damage from the radiation. This brings up two issues - first, we don't want to use any blood thinners to try and alleviate the clots on Caleb's port - and second, this could go on further or get worse. Getting worse would, obviously, not be good.
Given the Cholene:NAA ratio, Dr Warren asked if we wanted to take a different approach - begin some type of Chemotherapy. However, as we confirmed with her, there is no Chemotherapy shown effective. Given quality of life issues, we declined to do so. We decided, instead, to continue on the Interferon. We haven't been able to take interferon since early April - about 6 weeks - given the difficulties Caleb was having, and not being sure what was causing them. With all the Decadron he was taking, the liver function test was showing elevated enzymes which caused us to hold off on Interferon. There was also the question of if the Interferon was at fault. Hopefully, now off the decadron, we'll be back on track with the Liver Function and now thinking that the bleeding was the cause, we doubt any Interferon toxicity was going on. So, we can go back on Interferon given no other signs of growth.
Going back on Interferon also helps some of the research questions - since, if the Cholene:NAA ratio drops when we get back on Interferon, that'll be a great piece of data for Dr Warren that will hopefully help the study.
SO ... bottom line, we're disappointed in the port performance and we're disappointed that the chemical ratios in Caleb's brain spiked high. But, we continue to trust in God, and all else will work itself out! We'll write more when we get home ... THANK YOU all for your continuous prayers!
Tuesday, May 15
Here we are again in Bethesda, at the Children's Inn at NIH which has become all too comfortable of a home for us. Today, we had our pre-anesthesia clininc, neuro-psych evaluation, and general physical exam. We navigate the hallways of the NIH now like the back of our hands. When we got into the Peds clinic this morning, Caleb had no problems hopping out of the stroller and following Alexis (his wonderful nurse) down the hallway for vitals. This, versus back in November when he barely would make eye contact! He is clearly extremely comfortable here now. It's great, but then again, I wish it wasn't so. It's hard to explain. How life has changed!
All went well, today - the prevailing opinions among those who examined him were that he looked pretty good for what he's been through since our last visit here in March. Recall, all our hospitalizations and struggles have occurred since our last visit. It was interesting to note he was 49.9 pounds - good thing we wore light clothing :-) It does look, visually, like he's dropping some of the steroid puffiness. I miss 34-pound Caleb.
Tomorrow will be Caleb's "big day". We'll access his "new and improved" port, now installed in his right leg (?! - but hey, I'm no doctor). He'll get a good going over from Dr Warren, and then, the all-telling MRI. I'll try to post results from BWI while we're waiting for our plane tomorrow night, but no promises - might be after we get back to Houston. Caleb likes to occupy Mom & Dad by playing on the moving walkways. One of his simple pleasures. Thank God for simple pleasures.
Thanks for all the continued prayers; we feel so lifted up. If we could be so bold as to ask you to stop around 11 AM (Eastern Time) tomorrow, Wednesday, and say a prayer for Caleb, we'd appreciate it. God bless you all, good night from Maryland.
Sunday, May 13
Caleb had a very good weekend, indeed; he seems to be recovering well from his recent setbacks. Saturday, he enjoyed guy stores - he wanted to go to the cleaners, the bank, and Sam's Club. He made a deposit at the bank, and got to choose something from the Treasure Chest! (He picked a Kaleidoscope). At Sams, he wanted a pretzel and some diet coke - which we enjoyed while strolling the aisle. And, of course , we had lunch at Taco Cabana. We played soccer in the cul-de-sac, and some baseball. He had a good time - definitely, the energy is returning.
Sunday, after Church, we went to some friends' house where Caleb rode their golf cart all over the place, ate a good lunch, saw some huge fish in the pond, and had a generally good time. When we came home, Caleb wanted to again play soccer and chased the ball some, too. He's definitely more energetic. The appetite is also WAY down, now that we are completely off the steroids again! Praise God. I hope this continues for a long time; I know the steroids due lots of good but the incredible appetite, weight gain, hypertension, and hypoglycemia that come with them really make life tough!! Thank you, Lord, for letting us ditch the steroids at least for a while.
We have noticed Caleb having some minor tremors in his arms - however, David researched on the Internet today and found that's not uncommon when taking Trileptal - which Caleb has been since his early April hospitalization. Hopefully, that is the explanation. However, there's also been a bit of drooling going on - so we'll see what the MRI shows on Wednesday.
So, tomorrow, off we go to Maryland. Please pray for safe travels, and especially, on Wednesday at 11:00 AM EST (so 10:00 AM Houston) for a stable MRI. We are so grateful for everyone's prayers. You keep us so lifted up.
We'll keep you updated during our trip. Have a great week!
Friday, May 11
Caleb enjoyed sleeping at home last night, and had a very good day today. He and Mom enjoyed the day playing games, walking around the neighborhood (well, Caleb was pushed!) and Mom reports that he got up on his own and walk around the house a good bit. When Dad came home, he wanted to play Doctor on him, using much of his newly acquired Doctor gear from his latest stay at Texas Children's. Dad probably doesn't have much blood volume left after all Caleb drew out this evening for various "lab tests." Bottom line, Caleb is rebounding well and was feeling pretty good today.
We thought he'd enjoy not having to take his regular "deep cleansing" nightly baths - the ones where Dad scrubs him down head to toe - but he seems to miss them, and asks for his "warm bath". We can't submerge his incisions until Sunday, so no warm baths until then. Sponge bathing for now ... maybe this will make it easier to give Caleb a bath in the future!
Tomorrow, Dad will bring Caleb to a few guy stores if he wants to go. Surely, he'll want his Taco Cabana.
Monday, we are still planning to travel to NIH in Maryland for our (now) every other month visits. We're anxious to see what the MRI scans show since we've not been able to take Interferon since Caleb had his April 1st spells. His liver enzymes have been elevated (thanks to steroids - those things are awful pesky!) so we've been holding Interferon. Hopefully, with the steroids now GONE (did we tell you that??) we can resume Interferon soon. And, we miss all our friends in Maryland. How we wish we were making the trip for purely social purposes; what an incredible group of people Caleb is blessed to be able to see there. Such wonderful doctors & nurses, trying SO hard to wipe out this awful tumor. God bless them all. Please keep them in your prayers, too.
Guess that's all for now --- have a wonderful weekend. HAPPY MOTHERS DAY to all the Mom's out there, you are truly doing God's work. Good night.
Thursday, May 10
7:30 PM --- Well, here we still are. Apparently the surgery service has been working for hours trying to figure out how to discharge us. Anyway, we completed the doppler tests for the blood flow, no results told to us yet. Docs will follow up. Caleb is now having final labs/blood drawn, and after that, we'll head home! In fact, just signed the discharge paperwork. Caleb is doing fine right now. Thank you to everyone for keeping us lifted up in prayers! We'll post another update tomorrow. Good night ...
1:30 PM --- Caleb has continued improving through the day. He is finally off of the oxygen, and his blood saturation is staying 94%+. This is a major milestone to coming home. He also was able to stand up this morning, and walk a short distance down the hall before wanting back in bed. This is also good. The surgeon installed the port in the muscle of his right leg, so we were expecting significant tenderness and maybe difficulty walking. While it's tender and Caleb will mention it hurts if asked, he doesn't have a visible limp or vocalize pain spontaneously. Praise God! These are all wonderful things right now.
So, why are we still here ?? Well, the blockages in the veins are of some concern to the doctors. They do not want that to repeat in his leg. So, they want to do two things - first, they want a doppler study of the blood flow to better understand what the constrictions in his veinous system look like. And next, they want to consider putting him on an anti-clotting compound. Given that he has a brain tumor, and bleeding is a risk, the anticlotting meds carry inherent risk. It'll come down to a cost - benefit analysis of the risks. We kind of hope we don't have to do that, since it's a daily injection.
Still a lot of junk in his chest/airway, but improving. Thanks to everyone for your e-mails, calls, and prayers. We're reading Caleb all of his e-mails.
We still anticipate going home today although it may be evening based on the timing of the doppler study. Will update later this afternoon.
7:30 AM --- Good morning! After a rough night, Caleb seems to be doing better. His breathing sounded absolutely horrible - he was laboring very hard to breathe, and his blood oxygen sats were alarming the monitors. Annette and I were taking shifts staying awake with him because he sounded so bad. Finally, at about 3 AM, the charge nurse assembled the surgery resident, the anesthesiology resident, the respiratory nurse, and the x-ray tech to do a chest x-ray and consult. In the process of all this, and getting the chest x-ray, Caleb got stirred around enough and irritated enough that his coughing was apparently able to clear the airway issue. His breathing became much more even and calm, his blood oxygen came up to 100%, and he stayed that way for the rest of the night. So, he - and we - got at least a few hours of shut eye before sunrise. He's now alternating sleeping - watching Disney channel. He is still on oxygen, however - and his blood sats seem to dip a bit when we remove it - so that might be interesting in terms of going home.
So, the plan for the day - we guess - is to get him eating, resolve the oxygen issue, and wait until the surgeons clear him to go home. As people start coming by, we can confirm that. Thank you to everyone who is lifting up Caleb in prayer. He's definitely improving from yesterday.
Wednesday, May 9
8:30 PM -- Slight setback. We have had a rough day here at Texas Children's Hospital. Caleb wound up on the operating table for over 4 hours, for what was supposed to be a simple 45 minute procedure. Due to the complications, we have been admitted to Texas Children's, and we're now in room 930. Phone # (832) 826-0930. Here's the story ...
We knew Caleb's port had moved, but apparently, it moved a long ways. So it had to be completely pulled out and replaced. The surgeon apparently could not reinsert it - there is apparently a large blockage in Caleb's veins, where the large veins from the left and right arms come back together above the heart. He couldn't get past the blockage, and tried for over an hour. Then, he tried to move elsewhere but hit similar blockages in that area. In all, Caleb had over six incisions made in him, poor thing. The surgery went on so long, they brought in a relief surgeon - who wound up abandoning the upper veins, and moved Caleb's port down to his thigh/groin region. That'll be a new concept! Apparently, for reasons not totally understood (by us), Caleb lost much more blood on this procedure then normal/expected.
Due to the blood loss, and the large number of vein pokes/prods and incisions in him, his little body struggled a bit. His breathing is very labored; he sounds bad if you listen to him. Apparently, however, this is a marked improvement from when he emerged from the OR so I guess that's good. They admitted him to the hospital based on the complications during surgery, his breathing, and just to keep an eye on him for a while. He's very hoarse from being intubated so long; his throat hurts bad. They gave him morphine, so he's a bit drowsy. He's just not comfortable.
To me, very blocked vein sounds bad ... but the surgeon says no, it could be totally tied off with no issue (?!?). His words are that in kids, the blood "finds a way" to get back home (heart) via other channels. Completely counterintuitive to me, but he's the MD. The doctors were clearly struggling during the four hours. The surgical resident said the operation was "humbling" - so I can only imagine. I think there's more than we have heard.
But, as always, God is great and is keeping us all going. The nurses up here in 9 West are very pleasant and trying to keep Caleb comfortable with ice cream and jello.
We're on e-mail, so if you want to e-mail Caleb, we'll read them to him. We'll post another update tomorrow morning, or, if something else warrants it. Please say a prayer for Caleb's comfort and quick recovery. If all goes well, they'll send us home tomorrow.
We give thanks to God for you all continuously! Good night ... from Room 930.
Monday, May 7
The doctors at Texas Children's Hospital have told us that Caleb's port has moved. Yes, that's right - MOVED! That makes two times, now. We have known that problems with the port returned when, at our NIH visit in March, the port declined to draw back blood. We are very frustrated because this means yet another surgery for Caleb. Another round of anesthetic, another incision (probably on top of the other one), more sterry strips, more adhesive to spend a month peeling off, etc etc. SO - we'll go for operation #3 to install (for the third time) a fairly simple and (hopefully) operational port.
The surgery will take place on Wednesday, May 9, around noon. Please take a moment to say a few prayers for the hands of the surgeon as he attempts to commission a functioning port.
Otherwise, Caleb continues doing pretty well. He tires easily (7:30 PM to bed tonight), and has some symptoms we're not sure whether to attribute to his weight gain or to something else. Time will tell (and perhaps the MRI next week at NIH). But again, we keep reminding ourselves that we know exactly who is in charge, and He is a loving and merciful God. And we are peaceful. Thank you, Lord, for another good day and for all the angels you send to us each day!
Sunday, May 6
Caleb has continued doing well, praise God. He is on 1 mg steroids every other day, so the dosage is small now. While the appetite has weaned a bit, he' still voracious. He polished off a few hot dogs for dinner, a bunch of chips, a cupcake, some cookies, fruit, etc, at a really fun BBQ he went to at Ms. Janice's. He had a GREAT time playing with his friends and neighbors, and told me so many times on the way back home how much fun he had.
His energy level is coming back day by day; today, he dressed up in his soccer uniform and wanted to kick the ball around in the front yard. Since his most recent struggles came right at the start of soccer season (which he so wanted to play), he never got on the field except for the first practice. So, today was a nice day for him to be able to do that, even if it was just in the front yard. But he's now talking a lot about getting into swim lessons, which Mom and he will do during the week while Dad's at work. His goal is to not need his floaties anymore! The neighborhood pool is open again (yeah!) even though only on weekends - so hopefully we'll be getting up there a lot soon. He LOVES the pool.
He enjoyed TWO lunches at Taco Cabana this weekend. Woo hoo.
Have a wonderful week! God bless you all.
Wednesday, May 2
Sorry about the few days delay! We have been busy catching back up and getting everything going again after our return from Florida. We returned home on Sunday afternoon, where a white stretch limousine picked us up at Bush Airport! Caleb, initially disappointed that it wasn't a shuttle bus, finally got into the ride and began filling the champagne glasses with water and passing them to people in the back. He was laughing hard. He enjoyed getting them back empty, and then, filling them back up again.
Caleb has been doing just fine the last several days. He had his appointment at Texas Children's on Monday, and Drs Kilburn & Murali thought he looked good. His steroids dose are further reduced; we're getting down to almost one pill every other day. Caleb has gained ~ 13 pounds since resuming steroids, but we know he'll lose it when he comes back off. His sense of humor is coming back, and he's wanting to walk around and do things again. He's even climbed the stairs by himself several times. So we know the steroids are getting out of his system - but he's still limited by his weight; it makes it hard for him. He went back to school for the first time in a month on Tuesday!
We want to say THANK YOU to everyone for your constant prayers, letters, phone calls, e-mails, and visits. We are so lifted up by them. Know that God is hearing the prayers, and revealing so much through Caleb.
David is planning to put together a DVD of Caleb's Disney Trip; he would be glad to share it if you let him know you want to see it. But it probably won't be done for another few weeks since we're catching up and, also, we (think) we have an NIH trip the week after next.
We had a great trip, but it's good to be home. Goodnight!
Saturday, April 28
We've had another two great days here at Give Kids the World (GKTW) and Walt Disney World. Caleb got to spend an entire day here at GKTW yesterday, while we took break from the parks. He enjoyed swimming, discovered that he loves to play miniature Golf, spent some time fishing, played in the arcade, enjoyed some good food (and ice cream!), and a number of other fun activities. His cousins came for the day, and played along with him. What a great time we had! The golf course has dinosaurs scattered around that do interesting things when one makes putts. One dinosaur squirts water all over an unsuspecting golfer when the ball goes in the cup. Caleb enjoyed making that happen on purpose to several relatives, for a good laugh.
Last night, Caleb awoke with a bad pain in his side. We tried a number of different things, but none worked. After consulting with the doctors at Texas Children's, we dropped him in the bath tub. He layed down, and that seemed to work great. Since sleeping in the tub is tough, David ran out to Wal Mart for a 4 AM heating pad run - and Caleb, wrapped in the hot pad, fell back asleep at around 6 AM. We slept in, to give him some time to recover from that. He was OK today, thanks be to God.
Today, we explored the Magic Kingdom for another day. Caleb rode the train, Buzz Lightyear ride (twice!), did some shopping, watched a show, and ate some good food. Believe it or not, after all that, it was time to leave - the Magic Kingdom closed early at 7 PM tonight. We came back to GKTW, and feasted on Pizza, Ice Cream, and went to the Castle of Miracles to verify Caleb's star on the ceiling! It was!
More pictures are posted from Friday and Saturday . And by the way, thanks to everyone who e-mailed us telling us that they couldn't access the Disney Photo Pass web site without an invitation (i.e., the photo pass ID was "in use", or "bad", etc). Didn't know that!!! We believe we have now invited everyone who e-mailed us, and then some. If you want to see the pictures on the Photo Pass web site, just e-mail David and we'll send you the invitation e-mail.
And, several people have noted in e-mails that it appears Caleb has a bruise on his forehead ... well, he does! On our first day here, he got some enthusiasm and excitement and ran out of the Ice Cream Palace across the plaza ... and tripped! He fell down, and hit his forehead on the concrete. Also scraped up his nose a bit. We hadn't written about it here ... but since everyone is asking ...
We have truly had a wonderful visit here. It has been a very special time for Caleb - he got to meet a whole bunch of characters, collected many autographs, and enjoyed himself tremendously. It's also been a nice time for our family to spend with Caleb, enjoying him, seeing him with the characters, and watching him discover new things.
We are looking forward to coming home to Houston tomorrow! We'll play in the morning here at GKTW - swimming, golfing, playing in the arcade - and then we'll come home in the afternoon. Can't wait to see everyone! We have plenty more pictures to share then are posted here.
And BTW, Annette still hasn't recovered her cell phone. It also had her address book of phone #'s! If you don't hear from Annette, you might consider e-mailing her your telephone number in case it was one she only had programmed into her phone! And she obviously won't answer it ... guess we'll get another one when we get back to Texas.
Prayers tonight are for a good morning, and safe travels home.
Friday, April 27
MANY apologies for not writing over the last several days!!! We have been going non-stop, trying to fit everything in. Wednesday evening, David fell asleep while putting Caleb to bed (ha) so that update got missed, and Thursday evening (last night) we got home about 12:30 AM and we were all so tired! SORRY ABOUT THAT! But let us bring you up to date ... lots of pictures on the pictures page, too.
Caleb has had a great few days in the parks. The main theme has been meeting the characters, getting their autographs, and having photos taken with them.That is really Caleb's main interest. We have meet Mickey, Minnie, Pluto, Belle, Donald, Cinderella (of course!), Goofy, Chip & Dale, Launchpad McQuack, Friar Tuck, Alice in Wonderland, and on and on! Caleb has gathered many autographs, gotten lots of hugs, and moved many people. Disney has been wonderful to Caleb - they actually cleared the Character Connection area in EPCOT so Caleb could have all the characters surround him at once and interact with him 1 on 1. (And thanks to everyone else who had to wait!). They have really made this time special for Caleb.
In between, Caleb has ridden several rides (he LOVED the Buzz lightyear ride!), the motor speedway (he's a scary driver), It's a Small World (fell asleep), and several others. He had some naps in between. We spent part of Wednesday afternoon and the evening over at the Carribean Beach Resort, where his aunts, uncles, and cousins are staying.
Here in the Give Kids the World villa, Caleb had a photo session yesterday with Mickey and Minnie. He has also eaten LOTS of wonderfully good food. The volunteers and staff of GKTW are truly magnificent. And the weather this week has been absolutely perfect!
So, thanks for being patient with updates, and thanks for all your prayers for Caleb and us. We have really had a blessed time so far ... today, we are hanging around GKTW to enjoy the many things right here to do. We need a break from the parks, anyway.
Also - Caleb seems to be responding well to the reduction in steroids that's been going on for a few weeks. He's down to 2 mg/day now - and he is wanting much more often to get out of the stroller, starting singing along with the TV again, eating a bit less, and seeming more perky. Praise God!!!
Here are the pictures for Wednesday and Thursday. David also fixed the formatting on the Monday/Tuesday pictures. Also, Disney has a program called "DisneyPhotoPass" where they keep all your pictures (that they take) organized on the Internet for 30 days for everyone to look at, purchase copies of if you want, etc. Feel free to visit http://www.disneyphotopass.com to check out the pictures. Caleb's photo pass ID is WDWE-9X7E-6D7T-6T3Y. I think you have to enter a name, address, e-mail ID, etc to set up an account - even just to view - sorry about that.
And lastly ... it seems Annette has lost her cell phone in the park :-( So, if you are trying to call Annette on her cell phone, it's probably not going to get answered. Still trying to recover it via Lost & Found. Call David if you need to find Annette. E-mail us if you need the #.
From the Give Kids the World resort in Kissimmee, FL, have a wonderful day!
Tuesday, April 24
About midnight EST ... Caleb had a great day at the Magic Kingdom today! His wish came true ... he got to meet Cinderella in her castle, take some great pictures with her, and then ate dinner in her dining room! It was really wonderful to see him hug all over her when he got to meet her. He also got to see, and wave to, several of the characters from afar. He is truly "getting into" the magic of Walt Disney World. I expect tomorrow will be even better. Although it was hard to top some of the emotions of the day as Caleb blew kisses to Minnie mouse, and told Cinderella how beautiful she was. Wow. And the camera only captured 5% of it.
Caleb held up as good as could be expected today - it was HOT outside, so he wilted a bit in the heat. Taking him inside for spells helped. He slept probably 2-3 hours total in the stroller during the day, but was awake for the majority of the time. We rode a boat to the Magic Kingdom, ate ice cream, and had a really nice day.
Caleb's San Antonio cousins arrived tonight - and we'll see them in the morning. Caleb will be SO excited!!!
Please know how much this trip is meaning to Caleb, and how happy he is. Although it'd have been better ex the recent steroids course, all things for a reason and this is just the way God intended us to enjoy this trip. So we are! The memories are priceless ....
Here are some pictures. I have to apologize ... they are not up to the usual standards ... the software I typically use isn't on the laptop, and the page layout (photos and descriptions) got terribly corrupt somewhere in my modified process! But at 1 AM, I'm betting you'll appreciate the pictures more and trust me to get the page formatting right later!!! Sorry about that. Here's pictures for Mondayand Tuesday.
Monday, April 23
9:40 PM EST -- Greetings from central Florida !!!!! We have had quite a wonderful day, praise God, and are now writing to you from the "Give Kids the World" (GKTW) compound in Orlando, FL. What a day we've had! Here's a rundown ... We arrived home from the Emergency Room and got to bed about 4:00 AM. This gave us a good 2-hours of shut eye before we had to rise to meet our limo driver at 6:00 AM. At 7:00 AM, our wonderful limo driver Mr Lupe pulled up in his black suburban, loaded up all our bags, and drove us to IAH. Caleb was mildly excited, but the constant having to potty feeling dampened the enjoyment of the drive for him (as if anyone really enjoys a rush-hour stroll through Houston traffic???)
We arrived at IAH, and boarded our Continental flight to Orlando. Caleb slept most of the way (surprise!), but did manage to inhale a turkey sandwich, a bagel, bag of doritos, Twix bar miniature, etc., along the way. We arrived at Orlando to a nice couple waving a huge "GIVE KIDS THE WORLD WELCOMES CALEB INGRAM" sign! They took us to baggage claim, helped us with our 4 metric tons of luggage, and got us on our way in a rental van (OK, David is driving a Dodge Caravan!?). Caleb was still a bit contained in his excitement, perhaps not really processing what we were doing. Plus, he was still quite tired as evidenced by falling asleep at the airport and not waking up until we got to GKTW. When we came through the doors at GKTW to a personal greeting and a nice lady who handed him a Mickey Mouse stuffed animal, it started to come alive for Caleb.
GKTW is quite nice, resembling a community of villas with lots of fun buildings in between and two great pools. Arriving mid-afternoon, about what we had time for was to swim. CALEB HAD A BALL !!!! As plump as he is, now, he was excited to put on the floaties and then it was all history. We have great film! He dog paddled around, laughing and giggling at his siblings' antics, and playing some of his own. He talked abundantly, "Daddy are you proud of me?". He talked about how much he missed swimming. He just had a great time, and it was awesome to see. Praise God, we had an awesome 2 hours or so in that pool. It occurred to us that it's the first time Caleb has been swimming since getting sick in September -- he has obviously truly missed it. David then left for a mandatory orientation, and the rest of the crew went to Pizza around the (other, bigger) Pool. Caleb ate a reasonable amount of food, and quit. It looks like the steroid weening is beginning to translate to the appetite --- thoughts come from him other than food-related now, and his intake is diminishing.
Tomorrow we will go to the Magic Kingdom, but of course, Caleb just wants to go back to that pool! We think he will be quite excited at getting to meet the characters. He fell of to blissful slumber with his new Mickey Mouse snuggled in his arms. We pray that tomorrow is very special to him.
We'll write another update tomorrow evening. Thanks be to God for safe travels, a wonderful team of people here at GKTW, and all the prayers for Caleb's health and comfort.
2:30 AM -- Well, we're going home! Miraculously, Caleb's blood sugars all snapped back into line! Go figure --- we have really seen this now several times, where we have some sort of issue that has been documented and it miraculously reverses. So, we're going to try and catch a few hours of sleep before we have to leave for Disney. For whatever reason, we were supposed to be here tonight. Thanks to everyone, again, for all their prayers! We'll try to write tomorrow from Florida, Lord willing.
1:30 AM - Back in room #12 at the ER! This is feeling like a second home, the third time now that we have occupied this particular room. Caleb has now had his central line port accessed, and he had to have a second line put in his wrist. Dad has been to McDonalds once, and Mom has caught a little shut eye. Caleb is in great spirits, actually, and joking around. They just finished drawing labs (blood, etc) and we're waiting the results so that they can decide on treatment. They know we are supposed to go to Disney in the morning, and are being GREAT about trying to move things along. Then again, Texas Childrens is always great. What awesome people here. But, we have decided that if it be God's will that we leave tomorrow morning, then we will - and if not, then we'll go according to His (better) plan. We have caught up with the ER docs and nurses who now know us by name on sight (how sad!), and when the receptionist walked up to Caleb with his wrist tag he automatically offered up his hand. This is becoming all too familiar of a scene; we are way too comfortable here. Praise God, the people here make this bearable. Will write more as we know it. Hoping you are all in slumber!
Sunday, April 22
9:15 PM - OK ... well, not sure what this means ... but we are now enroute to Texas Childrens ER again. Caleb's blood sugar is running just under 400, and he is spilling glucose & ketones in his urine. The doctors pretty much all think this is a result of the Decadron steroids, and he needs IV fluids to try and clear this issue up. However, we are due to leave in < 12 hours and the docs think this may be only a "12-24 hour stay" ... so not sure what this means for our trip.
Speaking of which ... Caleb's big surprise is that he is going to Disney World to meet Cinderella! That was his WISH. We are slated to leave at 7:00 AM tomorrow morning, so not sure what this means. But we know that we are on a journey, and for whatever reason, this is what we are supposed to be doing right now.
Please pray for Caleb's quick recovery! But again, we trust in God - He knows what's going on. So off we go ... I'll try to update when we know more.
8:30 AM - Caleb had a great day yesterday! He and Dad went to "Guy Stores" -- Frys, Sams, and Taco Cabana. He demolished a plate of beans, rice, and a bean and cheese taco - to say nothing of the chips and queso. After a good nap, he helped Dad rotate the tires (well, provided moral support from his "throne.") He does seem to be feeling better. The appetite, although still voracious, does actually appear to be decreasing. He seems to have more energy, although the weight he has gained is still diminishing his general energy level and mobility. But we can see positive changes in his energy, appetite, and demeanor. We are hopeful this is a combination of steroids reduction and the Lord's healing graces!
It is good to see Caleb coming around. Hopefully, this will be the beginning of a GREAT week! More to come ... be sure and check the web site later this evening. Have an awesome day!
Saturday, April 21
7:15 AM - Caleb awoke early as usual, and immediately began eating! Already, he's been through a bowl of pasta, toast, chocolate milk, and grapes. He's now taking a break and looks like he might be going to take a nap watching Little Einsteins. He is excited that today is "Guy Store" day, and Dad will take him to his Special Saturday Lunch. Dad and Caleb are looking forward to it. Caleb has been doing fine, just - as we've said - eating a lot and the continuous potty thing. But otherwise, he seems in as good spirits as he can be with the steroids, and, generally just fine. No episodes now for 9 days. Praise God! Big sister and big brother are coming over today, and tonight or tomorrow we will probably share with Caleb his special surprise. Shhhh!!! We'll let you know after we do so. From Caleb Joshua - "Have a good day!"
Thursday, April 19
Praise the Lord, Caleb showed a bunch of signs of normalcy today! Of course, he is still consuming his weight in food everyday (well, not literally but just about!) and having a hard time moving about because of his growing belly. Caleb asked Dad to play Monopoly with him on the floor, and they did for a while. That hasn't happened since before his recent spells started. And, twice, he got up and used the restroom by himself. That's really great!! Now, Dad got home earlier today to help out with Caleb (so Mom could shop) so maybe it's just some of him seeing Caleb earlier in the day and Caleb being perkier ... but he showed some definite good signs today.
He watched some baseball this evening, and ate THREE bowls of pasta which Aunt Maria made for him.
He had his appointment with Dr Kilburn at Texas Children's today, and she thought he looked pretty good. She reduced his steroids dose some more, so now we are down to 2 mg twice per day. That's GREAT ... 4 mg total per day versus the 16 mg per day we were on while in the hospital. On Sunday, if we observe no adverse effects from lowering the steroids dose, we can go to 3 mg total per day. Hallelujah!!! We are waiting to see the appetite come down ......
Be sure and watch the web site next week for the details of Caleb's big surprise! Lord willing, he is going to get to do something very special.
Thanks to God for His healing graces on Caleb, and for his loving care of us. And thanks to all of you for your constant and unwavering support, prayers, and love for us. God bless you all!
Wednesday, April 18
Caleb remained in good shape today, other than the steroid effects with which by now you're intimately familiar! Tomorrow he has his appointment at Texas Children's, and hopefully, he will have another steroid reduction. He has not had any episodes since last Thursday, so tomorrow will be day 7 of no seizures. Praise God! We are so thankful. He joined his Mom at T-Bone Tom's for dinner tonight; Dad had a business dinner to attend. He stuffed himself with Mac & Cheese and french fries, at least. He couldn't hardly make it out of the restaurant.
We all want to know that if they can make a pill which makes you want to eat so bad, why can't they make a pill that makes you not want to eat ???
Thanks be to God for another day with Caleb, and thanks to all our extended family praying for us and Caleb. God bless you all.
Tuesday, April 17
Caleb finished up his taxes today (ha, just kidding) --- really, Caleb has done very well the last two days. He has contined seizure free, and this now completes 5 days without any of the episodes we were seeing rampantly last weekend. Caleb's doctors reduced his steroids again yesterday, so now we're down to 3 mg twice per day. That is a marked improvement from the beginning position of 4 mg 4 times a day. We hope the appetite will come down, too. Speaking of which, that is really Caleb's biggest continuing acute issue - food. His entire stream of consciousness deals with the security of his food supply. His appetite is voracious, and we are trying to steer him towards healthier options but it is difficult with some battles being sacrificed for the good of the cause.
Today did bring a significant request --- he asked to sit down on the floor and play "mechanic" with his Dad. He has these two plastic vehicles (tractor and front-end loader) that disassemble with the aid of plastic "power tools", and he wanted to do them with hsi Dad. That hasn't happened since before he began this recent series of episodes, so perhaps it means he's feeling better. And yesterday, he asked to "plant flowers" with his Mom - so they went to the store, bought a bunch, and planted them. (Caleb wound up falling asleep on the front lawn!) Bottom line, thanks be to God, we see some signs that he's feeling better.
We are very hopeful that he will continue to improve during this week, because, Lord willing, we have a very big surprise for him next week that we'll share more about over the weekend. But Caleb feeling well is an important requirement.
Thanks, again, to everyone who is continuing to pray for Caleb daily. We continue to feel your prayers, and be lifted up by them. And we remain very grateful to God, who has given us Caleb Joshua for another day and continues to reveal wonderful things to us through Caleb. Praise God!
Sunday, April 15
Caleb remained "episode free" today, praise God. Our third day of no episodes. All of our family, except Aunt Sue, left today - and fortunately, everyone had safe travels and is now home (except for cousin Victoria who is stuck in Charlotte!). Aunt Sue & Dad took Caleb to Sam's for some Pizza today - which he downed one huge piece of, plus a good bit of Aunt Sue's pretzel. His speaking got a bit poor at Sam's today - and it looked like he wanted to have an episode - but it didn't materialize. Caleb is still taking oral steroids, and the antiseizure medicine.
We also made it to Sunday night mass for the first time in 2 weeks (in hospital for Easter Sunday), and it was wonderful to be back. So many of our friends joined us in thanking & praising God for Caleb's recent recovery and his coming home. Caleb was extremely tired --- and doing something weird with his tongue --- but we figure he's just very, very tired. He was begging us to go home, have a bath, and put his jammies on! But he DID sing the Gloria at mass. It's so nice to hear him singing "Glory to God in the highest!"
Thank you, again, to everyone praying for Caleb - God hears them. We are thankful for you.
Saturday, April 14
Thanks be to God, another day passed with no zone-out episodes! Caleb enjoyed his family again today - from his aunts and cousins pushing him around in a wagon, to resuming his "Special Saturday Lunch" schedule at Taco Cabana with his Dad. Today was special, because his aunts/uncles/grandparents got to enjoy the Special Saturday Lunch with him! He continued being extremely hungry, as he has been. His belly is growing quite large and he's consuming so much food that he sometimes has trouble catching his breath. His comfort is an issue - we're all struggling with balancing his food intake demands with his weight. Thankfully, he seems to be tolerating the steroids reduction well. At present, this is Caleb's biggest acute issue.
All of our out-of-town visitors go home tomorrow, except Aunt Sue. We are so grateful they came to support us, and visit Caleb.
Friday, April 13
10:00 PM -- Hello from the Ingram house. Well, we're back from Relay for Life, Caleb has had a good hunk of pizza, a nice bath, and fell asleep watching Superman the Movie (an oldie, but a goodie). He had a nice lunch today at Sam's Club, feasting on Pizza. The Relay for Life was GREAT!!! Of course, it's still going on, but we didn't want to put Caleb in the tent in the rain all night long. So we brought him home. I'll post some pictures over the weekend of this wonderful event.
He is still really enjoying visiting with his cousins, Aunts and Uncles, and Grandparents.
He had no zone-out episodes today, which was a blessing. Thanks for all the continuing prayers. We are so grateful. Goodnight.
8:00 AM - Thanks for checking in on Caleb this morning! The main story of the day is FOOD - Caleb awoke at 4 AM wanting beans and rice. Dad managed to stave him off until 6:30 AM when the pressure just got too much!!! Caleb started out with a hot dog and cheese, moved on to Papasito's Beans and Rice, then chocolate milk. Then took a brief nap, and wants more food now!
Caleb's appointment at Texas Children's yesterday resulted in the doctor lowering his steroid dose - the "step down" is in progress, praise God. Yesterday was our first experience with Caleb "zoning out" at home, so we're still learning how to deal with that. He never lost control of tongue - so that was a blessing. Caleb has been fine so far this morning, enjoying his aunts, uncles, cousins, and grandparents who are here with him. We thank God so much for our awesome family.
Tonight is the Relay for Life, and Caleb's team is called "Cindarella's Kingdom of Cures." He will make a visit to the Relay for the survivor lap and the kickoff, and spend a while with his awesome friends who have prayed, visited, and loved on him.. Then we'll probably retire him to the house for the evening. Please pray for the success of this event, which raises much needed funds for cancer research. May we all long for the day that no other child has to be told they have cancer (or anyone, for that matter!)
Off to make Caleb more food --- everyone have a wonderful day. We'll update again later in the day, unless something warrants it earlier. Thanks to everyone for your constant prayers. We are so grateful.
Thursday, April 12
7:30 PM -- About an hour ago, Caleb came out of his unresponsive state. Praise God! No doubt, all the prayers going up for him. He is on the couch with his cousins, chowing down on hot dogs, bread, beans and rice, etc (probably just because we don't have any pizza!). It's good to see him responding to us, and walking around again. Sad to say I think he is getting used to these spells - he seems less agitated during them, guessing because they are not so new to him anymore. However, the reversibility of them provides some comfort in that we know we can "wait it out." Thanks be to God for the wonderful people who have been e-mailing us! We're a bit behind responding to some, but, please know that we are so grateful for the prayers and well wishes coming via e-mail.
Thank you, Lord, for another good day with Caleb. We might ask for prayers for Annette tonight, though - she has taken quite ill. I believe that she was suffering from extreme exhaustion, and a lot of emotional stress, and likely caught a bit of a bug. Hopefully it will be a short lived 24 hour variety.
Well, Caleb is enjoying his relatives being here but unfortunately, he went into another unresponsive state today. While eating breakfast this morning, he grew very quiet - it was obvious immediately what was going on. He had an appointment at the Clinical Center (Texas Children's) today, so we kept that and the doctors were able to see him. They have said he's apparently just having swelling from time-to-time -- and this is one of those times. At this writing, he is laying quietly on the couch, alternating relatives. We think he has bladder control, but he can't talk to tell us he has to go potty - so we have diapers on him. He is not very happy, unfortunately. Please, please, offer up prayers for Caleb's comfort -- as well as for us. This is hard to watch Caleb this way.
We take much comfort knowing that God is in charge, and that He will be merciful to his servant Caleb. Know that your prayers mean more to us than anything. We are so blessed to have you all. If something changes, we'll write an update before bedtime.
Wednesday, April 11
10:45 PM -- Caleb is now home, and resting comfortably. We've picked up all his prescriptions from the pharmacy (thanks, Pam) and have everyone pretty much settled into the house. It's a full house, with David's parents here, and Annette's sister Pam and her family. Tomorrow, David's sister Sue arrives to spend some time with Caleb. We are so grateful to have our family coming in to visit with us, and spend some time with Caleb.
The discharge procss from Texas Children's was fairly uneventful. Everything is done and signed, and we said goodbye to the friends we had made over the last week. The only slight irritation was the valet who took 50 minutes to get our car to us!
Caleb remains absolutely ravenous and focused 100% on food. He gets terribly upset if he doesn't get all the food he asks for. We are moderating his food intake, and he can get really upset with us!
Once again, praise to the Lord and thanks to our friends who supported us so staunchly during our time at Texas Children's. We love you all - you literally sustain us, and keep us up during these tough times with Caleb. Thank you so much! We'll be updating about daily. God bless, and good night.
11:00 AM -- Going Home!!! Caleb continues to do very well, and other than being solely focused on food and what time the pizza shop opens, is doing great. We took a few laps around the floor this morning in a wagon, while sipping a glass of lemonade. Aunt Pam, Uncle Bob, and cousin Tori arrived last night and spent the evening and some of the morning with us. His Doctors visited this morning, and agreed that right now, the best thing for Caleb is to go home. He's in fine shape to do that. Texas Children's once again showed us why they're Top-5 in the nation ... they are absolutely awesome. Thanks to the staff of 9 West Tower, and, the great folks from the Texas Children's Cancer Center.
So we're heading home! Aunt Pam just ran downstairs to get pizza for everyone (especially Caleb!) and then we'll go from there. THANK YOU to everyone for prayers, and visits. We love you all! And thank you, Lord, for bringing so many wonderful people to our lives, for your healing graces upon Caleb Joshua, for the gift of your Holy Spirit in Confirmation, and for the wonderful blessings you have bestowed upon our lives - most especially, the gift of Caleb Joshua.
Since we are heading home, we will probably revert to a daily update (versus multiple times per day) unless something happens to warrant a higher frequency. Should a message of a more urgent nature be needed, we'll use the e-mail list we have collected already plus the addresses of those of you who e-mailed Caleb (so tell us if you don't want us to!). If you want to be added to the "urgent list" and are not already, send David a note and give him your e-mail. God bless you all!
Tuesday, April 10:
9:15 PM -- PRAISE GOD, today passed with no episodes from Caleb!!!! He did well all day, other than the steroid-induced psychosis, and the massive appetite that drafted a huge section of a 16" pizza pie. We have switched over to Oral Steroids, having now been there all day. If Caleb can go ~ 24 hours on oral steroids, and have no further serious episodes, we are likely to be able to go home tomorrow. Caleb has been extremely sweet to everyone, but clearly remains very focused on his food supply. He got a bath today for the first time in a while - Thanks Be to God. We disconnected him from intravenous fluids this evening during waking hours - no need for them really since he's eating normally.
We had a whole bunch of visitors come to see us this evening, and we are so grateful and thankful. The mood in this room is SO much cheerier with all the visitors. Plus, the visible sign of community made real in our friends and family coming to us is powerful. We thank each and every one of you for coming to support us - and we thank God for giving us such wonderful friends as you.
The plan for tomorrow is to continue Caleb on oral steroids, and get ready to go home. Please pray for Caleb to remain stable - we would like to go home. We have now been here for a week. While we love the staff here, we miss being home. Thank God for the wonderful staff here.
We'll update again mid-to-late morning. Good night every one, and thank you, Lord for a good day with Caleb.
4:00 PM -- Caleb has, by and large, done well today. He has been awake and alert the day, although the symptoms of jumpiness, repeatedly asking for food and other compuslive-type behaviors (psychosis) were very prevalent. He has control over everything, but the motor movements are extremely jumpy. This could be steroid induced psychosis, but also, some tumor issues. Not sure which but the docs say the steroid case is very likely.
Caleb has been funny, engaging, and talkative today. He's done well.
We did have a visit with a nice lady from Hospice today. The doctors encouraged it, and we felt it was prudent to hear the story. They shared lots of good information with us, and if we need it, it's a very good option. The Lord strengthened us and supported us through the discussion. Plus, the Hospice worker was excellent.
Prayers today are for patience, as Caleb tries to stuff himself absolutely silly with food. If we attempt to moderate his food intake, he is a bear!
9:00 AM -- Good morning again from Rm 906 - we are delighted to report that Caleb awoke in wonderful spirits and repeatedly asking for Pizza! The dialog went something like this - "Dad, is the pizza place open?" "No, Caleb." "Is the pizza man at home putting on his clothes?" "Probably, Son." "Is he coming, soon?" "Sure, Caleb." "Will you buy me a pizza for lunch Dad?" "Of course, son." "Thank you for the pizza last night. I really enjoyed it!" (I'll spare you the next 5 minutes of the dialog!)
We have had visits from two doctors this morning, the neurology resident and the oncology attending. Both were absolutely wonderful from our perspective. The neurology resident literally stood at the edge of the bed and scratched his head - don't recall the exact words but something along the lines of, "This is puzzling?" And he asked a zillion questions to try and understand it. He left to spoke with his attending doctor. The oncologist - our wonderful Dr Pappo - came in and said, "So what happened?" We told him about our room full of powerful prayer, Caleb's anointing (Confirmation and the Sacrament of Anointing of the Sick), and how he then got up on his own and used the restroom and asked for pizza and chips! The good doctor just threw up his hands (in a nice way), said, "This is very impressive. I have no idea. I guess we just keep doing whatever it is we were doing that is working?!" Then, in a genuine, knowing way, he said, "I'm so happy to see this" and asked Caleb to eat lunch with him. (It's OK, we know what happened ... and honestly, I think the good doctor does, too).
We are, right now, just enjoying God demonstrating to everyone that HE is in charge of this show. Our prayers are being heard, and we firmly believe God is moved. Of course, we are enjoying the time with Caleb in great spirits - but we are so thankful that God is reassuring us so much. Whatever the long term outlook is for Caleb, we know firmly that it is God in control -- and that provides us more comfort than anyone can imagine. Praise God for his glorious deeds!!! He is truly great.
(As we write, Caleb is answering the questions being asked on the Disney Channel ... "Dora - do you see the wall there? Caleb - yes, I do, right down there!. " He hasn't done that in forever)
And THANK YOU to our wonderful friends and family, who flooded our hospital room last night in one of our darkest hours. You truly brought the light of Christ into this room, and comforted us all. Even the staff remarked what wonderful family and friends Caleb has, and how wonderful they support us. Amen, you DO, and we are so grateful for your support of us - our physical and emotional needs, but especially, your prayers to God on behalf of Caleb Joshua. He hears. And thank you to everyone who's e-mailing us and Caleb ... we try to respond as best we can in between caring for Caleb, but want you to know that even if it takes us a long time, know that we are reading them several times a day and they are wonderfully comforting to us)
We don't know what the next update will bring, but we'll write after Caleb eats his pizza lunch. Thank you, Lord, for another day with Caleb Joshua.
12:45 AM -- For all those checking often, we apologize very much for the lack of updates over the last 9 hours. It has been a tremendous roller coaster ride for us today, and we didn't want to post an update until we had a clear direction. Then it changed ... so, here is what we know, and what's going on now. This will be a bit lengthy, but here is the story with Caleb.
We have seen a fairly significant degadation in Caleb's abilities today. He lost control of his bladder, finally - this was a big blow to him. He lost control of his tongue, and thus couldn't move food around or swallow things very well. He still could not talk. His limbs were completely flaccid, and he could not hold them or move them effectively during the neuro exam today. He could look at you with his eyes, but say nothing. It was against this backdrop that the Doctors came to see us this afternoon, and told us that this is the "beginning of the end" for Caleb. Their explanation is that the death of the tissue, caused by the radiation, is both tumor tissue and good brainstem tissue. The necrosis underway is damanging the brain stem through swelling and tissue death, and the doctors feel that Caleb doesn't have a lot of time left. They believe, based on rate of symptoms and speed at which the change, that this will hit Caleb's breathing/heartrate centers at some point.
We discussed putting in a feeding tube for Caleb, and when we might do that. We also discussed how we want to keep Caleb comfortable.
They did a great job explaining this to us, and compassionately answering our questions - but they were clear that they do not expect Caleb to recover. They connected us with Hospice, who is supposed to call us to arrange a time to meet and discuss Caleb's case. At this point is when those of you that got calls started to get them.
This evening, our pastor, Father Albert, came to pray with us and to give Caleb the sacrament of Confirmation and the sacrament of the Anointing of the Sick. Caleb just laid there, but as we know, he can hear everything. After Father Albert had finished, Caleb began progressively getting more alert. And more alert! Then, he sat up and spoke to his sister Natashia - in a very articulate voice! He then announced he wanted Pizza and Chips! Then he ate it! Then he began joking with all the visitors who came to support us. PRAISE GOD!!! What our eyes saw was absolutely glorious. God performed yet another miracle in front of our eyes. It was absolutely, positively, amazing! God is great!
Caleb interacted with everyone for about an hour, and grew tired. He is sleeping well, now. The doctors again are puzzled, and can't offer much of a medical explanation for what has happened here tonight. Guess that's because there isn't one! This was just God reinforcing that this is HIS show, and He is in control. We know not the day or the hour. We only know that today isn't Caleb's.
Thank you, Lord, for another day with Caleb. Tomorrow is another day ...
Monday, April 9, 2007
3:00 PM -- Please continue to pray. Caleb continues to be aware of surroundings, but he is losing control of body functions and is not really responsive beyond his eyes right now. The doctors are coming back in an hour or so to sit down and talk to us some more. Please continue to ask God's mercy on Caleb, his support of us through this time, and if it be in accord with His will, Caleb's complete healing. This is in the hands of God - the perfect place to be.
11:30 AM -- Good morning from Rm 906 at Texas Children's. Caleb has had a difficult morning, having been in his "state" for most of the morning. As usual, things are changing. He is unable to speak at all, but he doesn't have the eyes rolled back and far away glance. A bit troubling is a new development where he seems unable to swallow while in the spell. But again, things change hour to hour. Now, for instance, he's moving his tongue around which he wasn't before. It's very difficult to manipulate him as he's just limp - and gaining weight! He still has excellent bowel/bladder control - no accidents - and has developed a way to let us know when he needs to use the potty. That's like the last thing he is holding on to, and I think he derives some internal pride from it. It's clear he understands everything going on - he'll watch TV contentedly sometimes, and if you call him, he'll look over to you. In some moments, he can squeak out a simple response - "Of course I do" is common - so he clearly knows everything going on about him. He just can't communicate outward. Starting to work with pictures and pointing.
A nice lady from the Chaplain Corps came by a while ago and prayed with us. We appreciated it.
Lord, come to the aid of your servant Caleb Joshua. He is your faithful one, and you have used him for so many wonderful things. Please grant him comfort and peace, and restore him to full health! And please give his parents plenty of patience and strength. We believe in you!
Thanks to everyone for all their e-mails, calls, and visits. Having been here now for almost a week, it's nice to see our friends. We love and appreciate you all.
Sunday, April 8, 2007 -- Easter Sunday
11:30 PM -- Sorry for the late update, tonight, especially if you were looking for it around dinner. We had a very busy afternoon. Caleb is now resting (fairly) comfortably. The high doses of steroids have already taken their toll in his waistline, but they are now taking their toll psychologically. Caleb was, for much of the afternoon, almost manic and obsessive --- extreme need for food (beyond "I'm hungry"), an obsession to use the restroom every minute or two, very jerky with his limbs, extremely aggressive. It was tough handling him. We are hopeful this is just the bolus doses of steroids he had over the last few days, and that the maintenance dose won't do this. In order to try and transition us into the "going home" mode, he is back on oral steriods at the same does he was last week. Let's see what happens.
We had some signs that Caleb would "snap out" of his zoned-out state with a good nap, and today bore that out. After he woke up, he was able to communicate again, and as the evening wore on the symptoms of his "fade away" state went away. No bolus of decadron was needed, praise God. This is a step towards going home. The antiseizure medicine may have some positive benefit, as Caleb didn't quite go all the way to the head-back and eyes-rolled posture he has in recent episodes. This lends some support to the argument that the brain stem swelling is causing the "seizure-like" symptoms - and with the meds, the swelling can't have quite the same negative effects it was. So we'll continue this for now.
Managing the "zone out" episodes where he can't communicate and is dead weight is one challenge, and managing the aggression, poor sleep, and manic episodes associated with the steroid is the second one. Please pray for these symptoms to go away, or at least be minimal, and for our strength and patience in dealing with them.
Praise God, we were able to be strong through Caleb's trials today. Thank you, Lord, for your love of our son and being with him through all this. And thank you, everyone, for your prayers. Good night.
2:15 PM -- Other than the specialness of Easter, today is shaping up much as yesterday did. Caleb zoned out on us about two hour ago, and he's back to the not-speaking, not moving any limbs, crying-out, everything dead-weight state. However -- there does seem to be some improvement versus yesterday in that he's not having his head roll right, eyes roll right, and stare at the corner of the ceiling. Perhaps the antiseizure medicine is helping some of these symptoms -- but the inflammation is still there, so he still zones out. He just woke up from a brief nap - and some of his vocal abilities are back. Sleep seems to help this, for whatever that is worth. But God is continuing to hold us up, and provide us strength.
9:10 AM -- HAPPY EASTER! Alleluia, alleluia, He is Risen!
Caleb continues to be present to us, and not in his "away state." He is very tired, perhaps a result of the antiseizure medication he's being given. He is hungry as all get out. His thoughts are constantly that of food, and where he is going to get his next meal or snack! That's great. Given the problems with his central line port, he's had to be poked a bunch of times since being in the Hospital. This morning, his nurse came in, and he looks very suspiciously at her and says, "why did you come in here?" Everyone broke out laughing.
He feels good, but very tired, and is being very loving.
With now three instances of steroids causing him to emerge from the "state", the Doctors are now birthing a treatment plan until they figure this out. We really appreciate Dr Pappo, who has been Caleb's attending most of this most recent visit to Texas Children's -- he is really working hard to get the various services together here at Children's to get Caleb stable. He checks on him very often and has really taken a lot of ownership to get Caleb stable. Please pray for him, that God will continue working through him to get Caleb back on his feet.
We'll write more perhaps early afternoon. This is surely the strangest Easter we've celebrated - something about not being home. But Praise God we are in a place where they love Caleb so much.
Saturday, April 7, 2007 -- Holy Saturday
8:15 PM -- PRAISE GOD!!! Caleb's Back!!! The room is rejoicing. When the doctors made their rounds about an hour ago, we planned to ask them to just try giving Caleb a high-dose hit of decadron to see if that would bring him out of it. When they came in, however, they proposed that to us. So we readily agreed ... and our incoming nurse delivered the 8 mg dose. Guess what, Caleb started coming around. He's now up, talking, laughing, and watching Cars. It is like a HUGE relief. Now, we just have to figure out how to keep the Decadron dosage high enough. And Caleb is eating like a HORSE.
This was a really trying day, but God sustained us through it. Although we were (are) exhausted, and although we got frustrated at times, there was just a peace within us. Thanks for the prayers, love, and all your support. And thank you, Lord, for giving us back Caleb again. If no other changes, this will be our last update today. I think we are on to something - now the trick is to figure out how to keep Caleb stable at home, and, then, they'll let us go.
5:30 PM -- Probably our most challenging day, yet. Caleb remains in this "miles-away like state", to varying degrees, from this morning - this event has lasted most of the day, now. Based on our giving verbal commands and watching his reactions, we're 99% sure he is completely aware of everything and has all his mental faculties about him. He is just unable to communicate outwards by speaking. We are finding new ways to communicate that don't involve speaking, and Caleb is learning them. I think most of his issues are frustration about not being able to express himself!
The doctors are now wondering if he's in pain, so they have given him small dose of morphine to see if that'll help. Doesn't seem to have mattered, much. They gave him the antiseizure medicine earlier today, but have to wait a few days for it to build up in his bloodstream and then assess the effects. He is now watching TV with his cousin, Julianna, although he cannot really speak and is making constant noises that resemble a crying sound (irritation/pain/etc). This is kind of hard to watch, so any prayers right now for strength and wisdom for us would be appreciated.
The opinion on whether seizures are involved has again swung to the "Yes" box - so the neuro & heme-onc teams are treating it that way now.
Heal your servant Caleb, Lord, and give us wisdom. Thanks to everyone for their fervent prayers.
1:00 PM -- Well, here we go again. Caleb went unresponsive again at 10:45 AM. The neuro teams were on the floor, and saw the event. So now both the Heme-Onc doctors and the Neurology doctors have seen this. We managed to slide into the EEG team's schedule (a small one on Saturdays!) today, and they got an EEG while he was in this state. Hopefully that will tell us something. We gave Caleb his regular scheduled steroids at 12:30 PM, and at this writing, he has not yet resumed speaking but he is eating lunch well and trying to recover. A few words are squeaking out. Caleb's Aunt Yvonne & Uncle Jorge, and his cousins, have arrived and are providing good incentive for him to snap out of it!
The pediatric resident communicated that the Neuro - Heme-Onc teams are once again revisiting whether or not this is a seizure. So, they have decided to try some antiepileptic medication to see if it has an impact. Everyone is trying their best to figure this out, and this latest step by the neuro team is probably to try the next possibility. The statements are again along the lines of, "so if we see something tonight ..." - translation, we're probably spending Easter at Texas Children's.
Please keep sending the prayers up. Caleb again pointed up to the heavens while he was "out of it" for a few minutes and looked at us with that knowing expression. God is here. Praise Him!
9:30 AM -- Caleb rested well last night, and awoke this morning VERY HUNGRY! Those steroids, which are the mainstay of keeping the brain swelling down, are causing him to have a voracious appetite. His belly is aleady expanding.
The neurology team is floating around somewhere, and we expect a visit from them this morning. Earlier today, one of the neuro residents visited with us in the breakfast room and said they saw some lesions in Caleb's brain which could explain the episodes but it's a stretch. Note ... we pushed him on what he meant by "lesion" and he was clear he does not mean additional cancer, but they use the word widely to mean a range of abnormalities. These lesions could have been caused by head trauma, by seizures themselves, etc. And, they could just be mistaken. We'll admit tihs is a bit frustrating.
So, we wait! We continue to pray for God's healing, and for his comfort for Caleb. We'll post an update after we have another plan from the neuro team.
Friday, April 6, 2007 -- Good Friday
7:45 PM Update -- Shift change at Texas Children's is done, and we've just finished talking with the new teams. Caleb continues resting comfortably, and has now fallen asleep. No further issues since the late-morning episode. He's back on IV steroids, and has eaten two large pieces of pizza (comprising ~ 1/3 of a 16" pie!), a tray of chicken nuggets, mashed potatoes, chocolate milk, and a cookie (Dad ate the carrots). He is incessantly hungry, but we knew this would happen.
The results of the MRI are - "looks the same", with pehaps a bit more necrosis in the same section of the tumor they were watching. Hard to say exactly, since time between MRI's is so small. If that's true, then of course, that's good - but why it's creating all this brain swelling is not known. The MRA (Angiogram) study has not yet been read by the radiologists - so I expect we won't hear until tomorrow morning.
So, our goal for the weekend is to get Caleb transitioned back to oral steroids and stable on them. That is the key for us to be able to go home. Lord willing, this will happen tomorrow. Please send up some prayers for that!!!
Barring a change in Caleb's condition, this'll be our last update this evening. THANK YOU, everyone, for your prayers -- they are truly felt. Thanks also to everyone who has been e-mailing, calling, and visiting. We love you all!
4:00 PM Update -- Caleb wrapped up his MRA study, and awoke from anesthesia about 2:30 PM. Again, he has emerged from his "state" and is once again talking to us. Thank you, Lord!! He did receive a good bolus of decadron before being put under. We have asked him if he remembers what's happening to him during these episodes, and he tells us that he "can't talk". Trying to sort out the comments of a 4 year old amidst piecing together what might be happening is tricky. But this last time Caleb was in this state, he had his index finger pointing straight up into the sky as he lay there. And he was looking at us with these eyes as if to say, "Don't you see this?" I think he was just reminding us who was in charge - and that even he knew it. SO - he downed a sizeable piece of pizza and some goldfish, and is now asleep. We haven't heard from the doctors, yet, about the results of the MRA study. I expect we will soon - I'll post an update. Thanks for all the calls, e-mails, and prayers. We are so thankful.
12:00 Noon Update -- Caleb has returned to his catatonic state. He has stopped speaking again, and doesn't move much. If this is any consolation, the doctors were in the room next door and we called them immediately - so they were able to see him 'slip in' to this state, and, what it looks like. Doctor immediately ordered return to intravenous steroids for a few days - translation, we are here for more days. We trust in God, and know that He is in control - but it's hard to see Caleb this way. They were just coming to get him for the MRA test, and we've now postponed that for a few hours. We are sustained by God's love and your prayers - THANK YOU. Please continue the prayers; we truly know God is listening! Now that we're able to update from Caleb's bedside, I'll post updates as we learn more, today.
You can continue to reach us via telephone 832-826-0906, or, Caleb's e-mail (email@example.com).
7:15 AM Update -- Caleb, of course very hungry (NPO since midnight) is awaiting his MRA (Magnetic Resonance Angiogram) test. Hanging out watching Little Einsteins. He slept well last night, ex when the phlebotomist came in and lanced his finger to get blood. MORE problems with his access port. We really have to figure that darn thing out, it was working so well. Blood tests returning to normal levels (had elevated CO2 for a while).
Thursday, April 5, 2007 -- Holy Thursday
10:30 PM Update -- Caleb was moved out of ICU to a private room. From the standpoint of a place for Mom/Dad to sleep, and accommodating visitors, a big benefit! However, we'll miss the ICU team that was very good to us, and we appreciate them. Our new direct line is 832-826-0906.
Caleb in Texas Children's ICU - Unfortunately, last evening, Caleb developed some rather frightening neuro symptoms and we brought him to Texas Childrens' ER where he was admitted to the ICU. His speech degraded to the point of being unintelligible, and then, he just stopped talking altogether. His head turned right (and eyes went far right) and just remained there. He could follow some very basic commands (squeezing fingers etc) but otherwise, just started into space. Also thought we had some seizure activity in one arm. In the ER, they gave him additional steroids (which he was already on), but not much else before sending him to the ICU.
We made some phone calls to friends & family to spread the word and begin fervent prayer. And pray, everyone did! I think we literally had hundreds of people praying. And, a whole crowd of friends (well, "Family") from Caleb's school came to the ER along with our wonderful Deacon Luis. We are SO THANKFUL for the blessings the Lord has given us in our friends and family. You all literally sustain us with your visits, cards, prayers, and the things you do for Caleb. Thank you, thank you, thank you. We love you all so much. And your prayers are the most wonderful gifts we receive.
Our prayers were answered! This morning, Caleb woke up speaking just fine! Many of his other neuro symptoms have gone away. He's eating like a horse. Very tired, but not unexpected. We asked the doctors for an explanation of why he is better, and they can't really offer one. It's OK --- we know! Praise God, and thank you Lord, for giving us back Caleb - again.
Thank you to everyone for your prayers. They sustain us, and lift us up. There's just no other way to say it -- THANK YOU!!!
We hope we will be able to go home tomorrow. They plan to do a test called an "MRA" to check some blood vessels in Caleb's brain. The EEG they did today said no seizure activity noted; only slight unspecified abnormalities associated with a child with a brain tumor on steroids.
Tonight, Caleb will hopefully rest some more and recover more. We know he remains in God's care. Please keep praying ... and P.S., David left the "Urgent E-Mail List" at home in haste to get out the door. When we return, he'll load it onto the laptop we just grab on the way out the door so we'll always have it. Sorry about that :-( ... pass the word!
Sunday, April 1, 2007
Caleb had his special Saturday lunch today instead of yesterday, since he was in the Hospital. Caleb is complaining a lot of not feeling well; tonight we had to leave Church early and run him home for a hot bath and Tylenol - he is clearly not feeling well from something. We're wondering if the steroids are already having their toll on him - it's quite a lot he's on. Not sure he can sleep well, and thus, he's exhausted. We saw this a bit in October, too. As the steroids backed down, it got better. Let's hope we can back off the steroids quickly. Speech still a bit off, and drooled once today -- although a marked improvement versus Friday. Please continue to pray for Caleb to be comfortable --- God has blessed us so many ways we can't count. We know he's holding Caleb close to him.
Saturday, March 31, 2007
PRAISE GOD! All is "mostly" OK ... we are back home from our night / day at Texas Children's Hospital. Caleb was admitted to the hospital last night, because of the concerning symptoms he was showing. The CT scan revealed no immediate threat but the symptoms warranted an MRI - so we stayed overnight, and the MRI began about 8 this morning. The bottom line --- the doctors believe that necrosis within the tumor (death of tissue) is creating some swelling, which manifested itself as the symptoms we saw. Of course, death of tumor tissue is a good thing so we just want to help the brain deal with it. The unfortunate thing is that, the way to deal with it is ... Steroids :-( So, Caleb is back on Steroids. He is already ravenous. "I'm hungry" ... here we go again! Hopefully it'll only be for a few weeks, and then, we'll get back to "normal" again.
The Doctors and Nurses at Texas Children's once again showed us why they are one of the best hospitals in the nation. Very compassionate, caring, concerned, professional, and competent. They did a GREAT job. We are so lucky to live so close to them, and be able to have Caleb treated there.
Thanks to all of you who were praying, calling, and writing us ... our prayers were clearly heard!
Friday, March 30, 2007
Please pray for Caleb --- we are on our way to Texas Children's Emergency Room. Since this morning, several symptoms have popped up - he's having some problems with speech, motor skills, and drooling. We plan for a cat scan tonight, and an MRI tomorrow. God is doing great things with Caleb. We trust in Him, and we know He will continue to do great things. He cares for us each day, often times through YOU. Praise God, and thank all of you for your prayers. We love you all, as does Caleb :-) David will try to post updates as he can. If you'd like to be kept up to date in a more rapid and reliable manner, please, e-mail David at firstname.lastname@example.org and leave your e-mail address. He will add it to a distribution list only used for urgent updates.
Sunday, March 25, 2007
Caleb has really done marvelous the last week. He had a great trip to NIH (other than his lackluster physical exam performance and fatigue), and has done very well the last several days. He has been full of energy, running around playing, well-mannered, kind and loving, and just generally great! Praise God, we are so thankful. He had a great time at a birthday party on Saturday, and seemed to have his pre-September energy level almost. Thank you, Lord, for a great weekend.
The only other elaboration from NIH is that the contrast activity in the center of Caleb's tumor has again changed, indicating something is going on. But, as with the time before last, we don't know what. The chemical ratios are all stable, which wouldn't be consistent with new growth. So, who knows. Caleb's hair is also growing back in around the Radiation affected zone, so when his whole head is cut short, it looks almost like a uniform hair doo again.
One fun story to share from NIH ... Caleb is really getting to know the routine well, now, including the various neurological exams. Almost TOO well. As Dr Warren was checking his reflexes (the knee ones), she went to strike his knee with the rubber hammer. Right as she was preparing to strike, Caleb kicks his leg out forwards as if a reflex reaction. We couldn't see it from our position, it just looked like the normal reflex check. But Dr Warren stops and exclaims to Caleb, "I haven't touched you yet!" We burst out laughing, having recognized that Caleb knew what was supposed to happen and just did it without the physical stimulus! I guess that defeats the purpose, doesn't it ??? :-) We love you, son!
Wednesday, March 21, 2007
Very late, so just a quick update -- we just returned an hour ago from NIH and the update is "STABLE". As we've said many times, that's great for now. Caleb was very "off" in his physical exams - seemed a bit uncoordinated, slightly uncooperative, etc - so we were a bit concerned that we would see something on the MRI. But apparently not. The chemical ratios being used to attempt to understand what's being seen on the MRI continue to show the same proportions as they did in November when we started at NIH. Caleb continues to feel well - and the sinus infection is gone!!! I'll post more tomorrow or Friday. Thanks to God for a good month, and to everyone for their constant prayer.
Wednesday, March 7, 2007
Caleb is still doing well, praise God. He got a new pair of shoes today, the ones that light up when you walk around on them. He is SO excited about them. When Dad came home tonight, he immediately asked to go to Barnes & Noble (by way of Starbucks, of course) so we know he's feeling well.
WE HAVE A NEW PROJECT! Guess what? We, and our wonderful friends, have established an American Cancer Society RELAY FOR LIFE team in honor of Caleb Joshua! If you are not familiar with Relay for Life (RFL), you can check it out here. Basically, it's a significant fundraiser for American Cancer Society which is also a lot of fun. A RFL team solicits donations, and the team does a Relay walk the entire night long (1 person walking, trading off) in order to raise funds and awareness of this terrible disease. Would you like to help us? You can join our RFL Team if you're close and want to walk with us - or, you can help by making a donation!!! You can check out our page here. Thank you so much for considering being a part of what we're trying to do!!! One day, Lord willing, we'll cure cancer just like we do strep throat today, and our future generations won't have to deal with this terrible disease. Let's make it happen!!!
Sunday, February 25, 2007
We're back from our latest trip to NIH! The news there continues to be the same - the tumor remains stable. Like we said last month, that's fine, stable is good for the next 75 years or so. The white streaking which appeared in the tumor remains, but is unchanged. The chemical analysis Dr Warren does did not enable any additional insight into what's going on, since it looked the same as it has in prior months. Thank you, Lord, for another good month.
There was quite a bit of snow and ice lying around this time (well, from a Texas perspective anyway!) Be sure and check out Caleb's Snow Page for some great pictures. Caleb had a good time in the snow. He also got to eat dinner with his Aunt Heidi, Uncle Steve, and his cousins at a cool diner nearby. Nobody left hungry!
Caleb has had a nasty sinus infection that just won't clear. Last month's MRI showed one sinus full - so we did the 21-day Augmentin course. This month showed 2 sinus' full - so now are trying nasal decongestants plus a different antibiotic. He's had a nasty cough and felt a bit under the weather - but he seems to be coming around nicely now. He's feeling good.
Thank you to everyone for their continued prayers. They lift us up every day!
We have updated the Pictures page, if you care to spend a few minutes there.
Sunday, February 18, 2007
Tomorrow, we travel to NIH for our monthly MRI's and examinations. We are always anxious at this time of month, but know that God is firmly in control of Caleb's condition. Caleb is still doing well, praise God. We continue to be thankful for all your prayers; they sustain us!
Caleb's MRI is 10:00 AM Houston time, Wednesday, February 21. If you would say a prayer then, we would be grateful!
Tuesday, February 6, 2007
Update on Caleb's Surgery Today -- SUCCESS!!!
Caleb's central line port was repaired today by the skillful hands of Dr Paul Minifee. Thanks, Dr M! The Doctor said he suspected a fibrin sheath over the port, but also, the position wasn't quite right. He cut some off the end, put a new needle thingy on it (boy, I'm great with Medical terms, no?) and replaced it. He said it works great, but we'll see when we go to NIH next the week of February 19th.
Texas Children's was running 100% on time, Caleb was in a great mood, and the whole thing went off without any issue whatsoever. The Doctors carried Caleb back to the surgical suite themselves, without Mom or Dad - and he didn't shead a tear! One of the things that's happened as a result of this whole thing is that Caleb has developed an incredible respect and admiration for Doctors. He trusts them with about anything, now. Hey, that's great. We are so fortunate to have such great ones.
Caleb has a bandage for a few days, then, back to normal. Thank you, Lord, for protecting Caleb today and guiding Dr Minifee. And thank you, Blessed Mother, for all your intercessions on Caleb's behalf. And THANK YOU, all our friends and family, for your prayers! You are awesome. We love you!
Tuesday, January 30, 2007
Our latest -- the word from Caleb's wonderful Doctor at NIH is that ... the "activity" within the tumor is not able to be positively identified at this time! I would say that's disappointing, but given we could have heard, "the tumor is growing," (but we didn't hear that) -- it's fine to hear that we don't know what it is! The chemical indicators in his brain are about what they were in November. So, no conclusions. That's fine - God knows what's going on, and that's what really matters now, doesn't it? Annette says the whiteness on the MRI we are wondering about is just the "Light of Christ" shining forth. And I do believe she is right.
Monday, January 29, 2007
We visited Texas Children's today for the altepase treatment to try and clear Caleb's "blocked" central line catheter. After an entire day, we left at 5 PM with no success. But it was not for not trying. Because the altepase typically works, the doctors have concluded that Caleb's line must be clear, but lying against the wall of his blood vessel and thus not very open/accessible for blood return. They took an X-Ray, and by comparing versus the original baseline, it has clearly moved. Why, who knows. So, we have set up February 6th for Caleb to be anesthetized (again) and operated on to reposition the port. He just accepts all this so bravely. But then again, I should know that God is lifting him up too - just as He is us - and giving him strength.
He's still feeling well. Thank you, Lord!
We also had a wonderful weekend in San Antonio, visiting Caleb's cousins and Aunt & Uncle. It's so nice to watch Caleb with his cousins! He is so happy then. But of course, they are very special people, too :-)
Thursday, January 25, 2007
Well, we're back from the NIH - and we have good news, "we're not sure yet" news, and disappointing but manageable news. Let's start with the good - the tumor does not appear any larger on the MRI, so it's not expanded it's boundaries. PRAISE God. Thank you, Lord! The "we're not sure yet" news - the MRI indicates that there is some activity within the tumor. However, what shows up on the MRI could be a) dying tumor; b) newly growing tumor. Kind of 180 degrees opposite results. a) would be awesome; b) would be really disappointing. The MRI, unfortunately, can't differentiate. So, Dr Warren also did a spectroscopic study which may help tell the difference -- but we won't know the results for a week or so. It also may not, in which case, we do it again next month. Actually, we are doing that anyway!
Now, the disappointing but manageable news - it appears that Caleb's port has a "sheath" over it inside his vein. That is, a blood clot has formed over top of it and it's only allowing the port to work one-way (infusion only; can't draw anything out). That means Caleb had to get stuck to get blood for labs :-( It also means that we need to remove it. We plan to visit Texas Children's next week for a "TPA Treatment". TPA (acronym for altepase, actually a heart-attack clot busting drug approved by FDA in the 1980's) will be injected into the port to try and dissolve the clot. There is some risk to this treatment, but doctors feel it's manageable. Now, we know why Caleb's port has always been a pain to draw blood out of ... it was plugged, from the start. Only now, it completely quit working. Probably this TPA treatment will be next week at Texas Children's. More to come.
Overall, the trip was good. We met some news friends at the Children's Inn, Caleb played in the playroom, and of course, our heart is always warmed by the wonderful doctors and nurses at NIH. They are very special people, and we pray for them every day.
Sunday, January 21, 2007
We are traveling to The National Cancer Institute at The National Institute of Health on Monday, January 22, 2007 to meet with Caleb’s doctor. Caleb’s next MRI is on Wednesday, January 24, 2007 at 11:00am EST (10:00 am CST). We want to ask if you would all take at moment at that time to say The Lord’s Prayer and ask God’s blessing and healing upon Caleb. We know Caleb’s healing will come in God’s time and we truly accept His will but, we figured it wouldn’t hurt if we all were praying for the same thing at the same time. Thank you for your love and support. God Bless You All!!!
Annette & David
Thursday, January 18, 2007
Well, here I go again ... Caleb is still doing really well! He feels good, and is a real ham. His physical therapist says that his motor skills are coming along nicely. The exercises he is doing get better every day. The strength he lost in his eye, legs, etc due to the tumor's crowding out the nerves in the brain, are restoring. His walk is more even. We see real progress in him, and we simply say THANKS BE TO GOD! And to veryone who is praying for Caleb!!! Our son is really almost back to himself.
We haven't done much since Christmas (and by the way, here are the pictures), and our last trip to NIH. Caleb and Dad are faithfully visiting "Guy Stores" on the weekend, and having their Special Saturday Lunches at Taco Cabana. Mom and Caleb are playing games (he's getting really good at concentration!) and organizing his Thomas toys. He is really enjoying playing with his new Thomas acquisitions.
When Caleb first was diagnosed, he stopped doing LOTS of things he used to. I have written in the past of things that he's resumed, one by one. He hasn't done anything new in a long while - but then over the last week, several things he used to do have come back, too! Very small things, but distinctively Caleb (for instance, he wants to play in the tub again with his water toys, instead of just being washed).
Something else very heartwarming: Caleb seems to be starting to get interested in Church. He always sits there and asks, "how many more songs ??". But over the last several weeks, he has begun singing some of the songs (loud!) and this evening in Church, he even said some of the responses during Mass. Last Sunday at Church, he wanted to wait to talk to Father Albert after Church - he waited like 10 minutes - and gave him the biggest hug! It's awesome.
We are traveling to the NIH this coming week for Caleb's January Doctor visits and the all-important MRI scan. Please pray for our safe travels, as well as for God's blessings on Caleb. Please also pray for the wonderful Doctors and Nurses who treat Caleb at NIH, and for the wonderful people at The Children's Inn who care for our needs while we're there. May God bless them all.
We again want to tell you THANK YOU for caring so much for our son, and for us. You have been God's biggest blessing to us.
Friday, January 5, 2007
Happy New Year!!! With the holidays, web site updates got away from us. We will do better, promise! Caleb's Christmas pictures will be up this weekend, too.
A few things to share - Christmas, and our NIH Visit.
First, the news everyone is waiting for - the NIH Visit - Caleb traveled to Maryland the day after Christmas for his monthly visit and MRI. The MRI revealed that the tumor has not grown since last month's pictures - PRAISE GOD. Of course, what we would LIKED to have heard is, "where did the tumor go ?!!!?!?!". But since they were not able to tell us that, then just "not growing" was the second best news we could have gotten. The weekly injections of interferon are going fine - Caleb is about at the point of just sitting down and rolling up his sleve, although he does have a bit of apprehension the 60 seconds prior to the injection! He's eager until it's mixed up and David draws it up - then he gets a bit edgy! But he is surely being a big, brave boy. We are proud of him. And thank you, Lord, for strengthening us all through this. We returned to Texas late Thursday the 28th, in time for New Year's preparations!
Now, Christmas - Caleb had a blessed and joyous Christmas with his cousins. He got the three things he asked for from Santa Claus: a new purple bicycle, a mailbox, and a Diesel 10 that goes by itself (Check out Thomas the Tank Engine if you don't know what Diesel 10 is!). From friends and family, he received a tidy stack of gifts which he is enjoying. One of his favorite gifts is the Thomas Shaving Kit that his Aunt Yvonne & Uncle Jorge bought him - he stands next to Dad and shaves with his own Thomas Razor (yes, it's a simulated razor!) and his own Thomas Shaving Gel and even puts the Thomas Hair Gel in his hair. I will have to post a picture, it's awesome.
One other thing we have been remiss in not mentioning yet --- Caleb's cousin, Marissa, touched our hearts when she celebrated her 10th birthday recently. When she sent out her party invitations, she requested all her friends not buy her a birthday present - but instead, to bring a donation to the Pediatric Brain Tumor Foundation. WOW. She collected over $650 for the PBTF. Marissa, you are so special - thank you so much. What an awesome thing you did for Caleb. We love you!
Caleb continues to feel well - thank you, Lord. And THANK YOU to everyone praying for our son. You have literally no idea how much that is lifting us up, and Caleb of course, too. We feel the love and prayers. We have no idea how to say thanks adequately. We are feeling very blessed this Christmas season. We are thankful for our friends, family, and faith. We are thankful for this time God has given us with Caleb - we hope it's years and years and years - but in the end, we trust in God's divine plan.
Tuesday, December 12, 2006
At the risk of repeating ourselves - Caleb is still doing very well. Sometimes, the shunt in his head and his excess weight are the only reminders that he's ill. Then, sometimes he'll look at you and his eyes don't quite line up and you'll remember. We continue to pray frevently for the day God miraculously heals Caleb, and the Doctors stand before us befuddled, wondering if the MRI machine is broken. But, on the same hand, we trust in God's grace and take comfort in the fact that He is God, and we are not. And once again, at the risk of repeating ourselves, we thank you again for your prayers on Caleb's (and our) behalf.
Caleb had a truly wonderful time this past weekend - it was full of the two things he loves tremendously - Big Sister, and Trains! We spent the weekend in Austin with Natashia, and Caleb got to ride the Austin Steam Train (presently, a Diesel!) from north Austin to Burnet aboard the Hill Country Flyer special service to the Main Street Bethlehem in Burnet (See Pictures!). If you have never ridden the Austin Steam Train, we can't recommend it enough! It's AWESOME! And the *free* Main Street Bethlehem put on by the First Baptist Church in Burnet is truly incredible to behold - add it to your calendar for next year (1st two weekends in December). REALLY. It is tremendous. And thanks to the folks at the Christmas Cafe in Burnet for a special supper in wonderful setting. We had a truly blessed Family Weekend - thank you, Lord.
Caleb's quote for the weekend: At the Best Buy in Austin, Caleb bumps into the display of AA Batteries and several fall to the ground. He sheepishly looks up, then gets a big grin on his face, and says in a hammed-up voice - "Clean up, Aisle Two!!!" Who could be upset???
NOTE - For those of you e-mailing Caleb, THANK YOU! He is SO EXCITED to check his e-mail now!!! He asks us to see it each night, and is even figuring out how to use Outlook himself to get into it. Of course, being 4 years old (!), we have to read each one to him - but he loves to open it up and then call us to read them. He's trying to master the art of REPLYING to e-mails - and we are still working on that. After we read it, we ask him what he'd say to who wrote him - and if he has much to say, we will send it back. Thank you for sending thoughts to Caleb! Soon, David will add a form for those who don't have an e-mail client which launches in response to the Mailto: link. That way, you can still send e-mail to Caleb from his web page. To come in the future. In the meanwhile, you can always e-mail him at email@example.com.
Friday, December 8, 2006
Caleb traveled downtown to Methodist Hospital today to have a Christmas Party-Reunion with his wonderful friends in Radiation Oncology. He was so excited! He got to sit on Santa's lap, and received some nice gifts from his friends there. What a wonderful place. We are so touched by the people who work in the Radiation Oncology section at Methodist. In the midst of the darkness of serious illness, there is a wonderful beacon of light in that group of special Doctors, Nurses, Technicians, and Support Staff. God Bless them all. See a few pictures.
Wednesday, December 6, 2006
HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU!
HAPPY BIRTHDAY DEAR CALEB, HAPPY BIRTHDAY TO YOU!
Caleb turned 4 today. He is very excited. He had a small family party, with a great Cake Mom made for him. See some pictures.
Monday, December 4, 2006
It seems like forever since we've done an update - and it has been a long time! The holidays, and our recent Washington, D.C., trip, have caused our updates to fall a bit behind. Here's what's new with Caleb ...
Caleb continues to do VERY WELL! His spirits are high, he's the same joking and jovial self, and he is losing weight! These are all wonderful things, and we praise God for them each and every day. Caleb does tire out (read: Crash!) hard as night falls, but he's his old self the rest of the time. He seems to feel well, and has even spent a full day at school (Mom close by) recently. It is joyful. Praise God. Thank you, thank you!
Now - the update on our trip to the National Institutes of Health in Bethesda, MD ... Caleb is participating in a Phase 2 Clinical Trial to test the effectiveness of a drug at slowing the regrowth of his tumor. While at NIH, we learned that his tumor DID shrink with the radiation treatments he received in Houston, but it's still there; the pressure in the brain is greatly reduced judging from the MRI imaging; and, a chemical analysis done on the tumor in his brain indicates he may be in the group that has done better on this protocol - we hope so. This is all good news, medically. The neurologists and psychologists who met him were impressed with his abilities and condition in general. As good as we could have realistically hoped for - again, medically speaking.
We can't say enough good things about the people we've worked with at NIH! We were extremely impressed at not only the medical side (Dr Warren, and Caleb's nurses, and staff) but also by the incredible people at the Children's Inn where we stayed on the grounds at NIH. They have an amazing setup which is 100% geared towards kids and families, and, amazing people who work there and volunteer there. It's truly a wonderful place to be if one has to be away from home under such circumstances. They made our visit very comfortable and made Caleb feel very welcome. We thank them!
God continues to reveal more to us each week, largely through the wonderful people he brings into our lives. The friends and family who are there to support us, as well as new people we meet daily, all bring love and comfort to us all. Thank you so much - you are truly angels.
David will post some pictures of our trip to Washington soon - he knows that pictures are long overdue!
Tuesday, November 21, 2006
Caleb continues doing WONDERFULLY! Praise God!!! He is enjoying this week with his cousins very much. All of his symptoms are still gone, and his sense of humor is back! His energy is fantastic; he's riding his big wheel all over our street and even his John Deere tractor now and again. He still loves to sit at his table and work with his paper, scissors, and stickers. And, his wit and sense of humor are as good as ever. It's really great to see Caleb doing so well. Thank you Holy Spirit!
Monday, November 20, 2006
We visited the home of some wonderful people this evening - friends of our neighbor. We all prayed over Caleb, and asked the Holy Spirit to heal him. It was a wonderful evening. God reminds us that where two or three are gathered in His name, he is there ... and he definitely was this evening. We felt the wonderful presence of the Lord upon us and Caleb - and, as God is very good at, we all felt at peace. Thank you, Lord, for the wonderful people you have brought into our lives through Caleb's illness.
Saturday, November 17, 2006
Caleb and Dad had their second weekly lunch at Taco Cabana, what Caleb is now calling their "Special Saturday Lunch." His appetite is much more reasonable now; he's taking NO STEROIDS! Praise God. Even looks like he's losing some weight - but maybe that's wishful thinking on Dad's part. We visited Barnes & Noble late at night, for Caleb to grab a snack at Starbucks and stack some books on the stools while Dad reads. At least two evenings a week, Caleb wants to go to Barnes and Noble. We think he's found a new hobby. What a great day! Today, God spoke to David as clearly as he ever has about Caleb's illness, while David washed the car. Never knew carwashing could be so spiritually fruitful! If you are interested, you may want to read about David's page on "the Carwash Prayer."
Here it is!
Saturday, November 10, 2006
Caleb finished his radiation treatments on Thursday! This means no more "no food and drink after midnight!" Also, no more getting put to sleep every morning. And, no more daily trips to the medical center in rush hour traffic! So that's GREAT. But, it also means we don't see daily the very good friends we made over the last 6 weeks. Caleb's treatment in the Radiation Oncology Department at Methodist Hospital was a wonderful experience - the doctors, nurses, and staff who work there were nothing short of amazing people. We have the most incredible respect, admiration, and love towards those folks. God bless them all for their wonderful ministry to others, and the compassion and love with which they did it. But most especially, for the great love and care they showed to our Caleb.
It's clear Caleb is doing GREAT! His sense of humor is back in full - he finds great amusement in all kinds of things. Wild laughter ensues at times. He has no balance problems, his eyes are front and center, and he wants to do everything again. The weight still is his biggest struggle. He gained 6 pounds last week. But, less steroids again this week hopefully will translate to less weight. He's definitely eating less.
Summary - Caleb is doing awesome. Just heavy!
Sunday, November 5, 2006
Caleb went to Austin to visit THOMAS The Train!!! (See our pictures). He enjoyed riding Thomas, and getting to visit Sir Topham Hatt (he actually hugged him!) This was a big boost to his spirits. In case you didn't know it, Caleb is a HUGE Thomas fan. He also enjoyed getting to spend the weekend with "Big Sister" in Austin, and spending time at her apartment. It was a great weekend.
Tuesday, October 31, 2006
Caleb went trick-or-treating tonight!!! We pulled him in the wagon, as he was really too weak/tired to walk, but he walked up to a few houses from the driveway and held out his jack-o-lantern. After about 2 streets (maybe 20 houses?) he was just too tired, so we pulled him back home. He dressed up in his Exxon Fire Bunker Gear, and was really handsome. He was so proud of his fire coat! Last evening, we carved two pumpkins and he had a ball. Several times, he went into gut-splitting laughter over something or other. The bottom line --- his weight is still his biggest issue, but otherwise, he is really doing GREAT. Caleb also spent TWO HOURS at school today!! We are so excited --- these are very good signs. We are enjoying Caleb every day. Praise God!!
Sunday, October 29, 2006
Caleb spent the weekend with his cousins in San Antonio. He really loves them - he cried his eyes out when it was time to leave on Sunday. But, Aunt Yvonne and Uncle Jorge are going to bring the girls up to Austin next weekend to have lunch with Caleb while he's visiting Big Sister. That helped him feel better a lot. Caleb did "homework" (cutting/gluing/etc) with his cousins, went to the neighborhood party with them, and to Church. He even got to take them to lunch at his beloved Taco Cabana. What a wonderful weekend. Thank you Lord. Caleb is doing well. His radiation treatments continue to go well, and he is taking less steroids.
Sunday, October 22, 2006
Caleb had quite a good weekend. After a week of improved attention span and stamina, he really did well this weekend. Saturday he returned to doing "guy stores" with Dad - lost track of how many stores we went to. For the first time since the Sunday before he was diagnosed, Caleb & Dad had their weekly lunch at Taco Cabana. Saturday evening when Dad went clothes shopping, Caleb came along and walked (unassisted!) around Dillard's for a good 2 hours. In the car on the way home, he was very chatty. Praise God!!! Other than the weight and insatiable appetite from the steroids, and the crazy haircut from the radiation, Caleb almost seemed normal.
At the Church Bazaar on Sunday, Caleb was more lethargic but that almost seems normal after his "big Saturdays." Sunday evening, he did want to work with Dad in the den for a while and then played nicely with his friends Haley and Sydney at his table. Thank you, Lord, for a good weekend.
Thursday, October 19, 2006
Caleb saw his doctors today, and everyone agreed that he is looking quite good. His eye coordination was was excellent, he has good (and even) strength in both sides, and even actually talked to the Doctors! They again reduced his steroid dose. We are glad, for we hope this eventually translates to less appetite and some shedding of his incredible weight gain (8 pounds, so far - 25% of his starting weight!). He also had his first physical therapy session today.
Saturday, October 14, 2006
Today was certainly the best day since Caleb was diagnosed, and probably the best one for a long time before that -- courtesy of the wonderful men & women of the Exxon Mobil Baytown Fire Department. When Caleb showed up to look at the fire engines at today's employee health & safety fair, they were ready for him! They presented him with his own set of genuine bunker gear, complete with a patch from each fire team. They also gave him a real fire helmet, with a beautiful stand, autographed by many of the fire team members with wonderfully encouraging sentiments. Rescue Capt Byrd Reed gave him the "Key to the Fire House!" I have not seen Caleb smile this much in WEEKS. What a wonderful boost to his spirits!! He now tells us he's a "REAL Firefighter!" He proudly displays his helmet, is about inseparable from his bunker gear, and carries his Firehouse Key around on his belt. But what probably made the biggest impact on Caleb was the ride he got in a REAL fire engine! He woke up several times Saturday night and told us how much fun it was. Thank you SO MUCH, Exxon Mobil Fire and Rescue teams! In fact, this one deserves its own page. Check it out here. We do not know how we will ever say thank you adequately.
Friday, October 13, 2006
Caleb did well with his radiation treatments this week. He is starting to lose hair behind his ears (where I suppose the radiation is most aimed). Yesterday, the doctors again reduced his steroid dosage which completely eliminates having to wake him up at night to give him medicine!!! YEAH! We (and he) are very glad. Although he grows a bit more pudgy and cheeky with each week, and continues to be very tired and lethargic, he doesn't seem to be otherwise bothered with any negative symptoms. He is looking forward to the weekend off.
Note for everyone who is praying --- THANK YOU. You are sustaining both Caleb & us. God hears the prayers. Although he's very tired, we are starting to see signs of the "old Caleb" in his words. Praise God!!!
Monday, October 9, 2006
Today, we consulted with physicians at M.D. Anderson Cancer Center in Houston. All the people we met at M.D. Anderson were wonderful. However, they were not able to provide us with any type of promising treatment versus what we have been doing at Texas Children's. The doctor did, however, let us know about a novel treatment he could try should Caleb's tumor resume growing while he's in the NIH study. We have tucked away our M.D. Anderson info and will return for another visit, if needed, at that time. We hope we will not need it.
Caleb continues to do as well as could be expected. He's gaining weight with steroids, and eating endlessly. He complains of frequent tummy aches. He watches a lot of DVD's!
Today, Caleb got his first pet ... a goldfish! He named her Dorothy, after Elmo's fish. He is very excited about his fish.
Saturday, October 7, 2006
Caleb went to Galveston today with Mom & Dad and his Aunt Sue & Uncle Dave. Destination - his favorite spot, the Galveston Railroad Museum. He also got fries & ketchup at Fuddruckers. This was really the first time we have "been out" with Caleb -- better results, he seems to be getting a bit perkier. We'll keep getting him out!