Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

January 22, 2010

The Jury Foreman Speaks

When juries wrap up quickly with a verdict, it can be a good sign or a bad sign, but it usually means that they have found the suspect not guilty. In this case, the jury adjourned hours earlier than expected to report that our little suspect is not guilty of having visible tumor.

At the time I heard the news that they were closing, I was at St. Jude making my way to the noontime seminar on ependymoma. It was a shock to hear that Dr. Boop was primarily concerned with hearing whether he was done so quickly for good or bad reasons. The rest was just icing. As we have learned from our experience, the flow of information trickles in, and it was several hours until Dr. Boop met us in the recover area and explained what he found in surgery (he had to do an urgent shunt revision after Colin’s surgery).

The sixth and seventh nerves were untouched, so we hope that Colin’s progress in these areas will not take any steps back. There was a hunk of tumor under the bundle of nerves nine and 10 that had been scarred from previous surgery (no surprise) and had to be manipulated in order to be cleared.

Dr. Boop’s fellow described Colin’s brain stem as “puny,” referring more to the Southern term for sickly rather than being small. However, when I pressed her on what a puny brain stem looks like, she said that Colin’s looked a bit small. I imagine it a bit like a piece of ginger that has been in the fridge too long, though I’m sure that’s nothing at all what it really looks like.

The basilar artery was protected by the arachnoid lining, so they were able to delaminate carefully without disturbing the artery. They stopped because there was nothing else left that they could see, and they couldn’t see anything on the other side of the brain stem that looked suspicious.

When I asked whether he felt that the tumor had changed from chemotherapy, and Dr. Boop said it was much easier. He agrees that chemotherapy seems to be a good strategy for improving the resectability of ependymoma. This was not something that specifically came up in the seminar at St. Jude, but we are selfishly gratified that this at least helped Colin get another big step closer to a cure and justified our decision to do chemotherapy.

A follow-up MRI will tell us how to classify the surgery and whether it is really a gross total resection (GTR), the gold standard in the treatment of ependymoma. Although the prognosis for this kind of cancer is somewhat dependent on pathological features and expected aggressiveness, the most important factor is successful complete removal of resectable tumor tissue.

The hope and expectation is that any remaining cells, of which there are certain to be some, will be taken care of with radiation. We are cautiously optimistic about celebrating a victory regarding the GTR, but we are absolutely thrilled with Colin’s immediate post-op recovery.

A Good Problem

Colin hasn’t been very happy since he woke up, but he’s been irritable, feisty and active. Although I’d prefer he not suffer, it’s good to see him move so well and try to flip over onto his knees. We can hear his voice when he cries, which is certainly a hopeful sign. However, we are giving him morphine to keep him comfortable so he is neither crying nor fitful.

The trip to the ICU was delayed by emergencies, so we waited in the recovery area for a few hours before getting “settled” in the ICU. It was a fairly unsettling settling process. We were separated from Colin and weren’t allowed to see him for several hours due to an unspecified procedure that forced them to usher out all of the parents.

We certainly respect the privacy of other families, but if it happens while we are actually in the ICU, we will be hard pressed to leave him alone (they may have to call “Doctor Strong,” the code for security). After all, we have gone through the experience of being in an ICU while another child coded, and the last thing I want is for Colin in his state of greater awareness to go through that without one of us at his side.

There is a red-eyed family here with a little baby that has an I.V. in its head. In the waiting room, they told somebody that they had to make “a decision.” We are all here for different reasons. As grave as Colin’s surgery was, we yet again come face-to-face with somebody else’s situation that appears so much more tragic.

Colin is doing so well and his prognosis (presumably) has improved dramatically with this successful surgery. Any apparent complaints that we may have are tempered with our knowledge that these are creature comforts and that another child may tumble into a more desperate crisis in our midst.

Creature Comforts

While we had been led to believe that Colin might get his own room (there are some rooms behind glass doors), he is in the open area in the chaos of this old school ICU. We are relieved that he is doing well enough to leave tomorrow. Initially, we had thought we would stay there a minimum of three nights and possibly much longer.

At NYU, it was easy to identify the bed spaces in the four-bedded pods. However, at Le Bonheur, the patients seem almost randomly scattered in a room that is cluttered with medical equipment and supplies, records, computers, and cloth screens on rollers. The staff is certainly competent and it is no criticism of the care we have received, but the environment is hectic though (thankfully) we don’t seem to have any screamers in there at the moment.

Even so, the cacaphony of hissing and beeping is enough to keep somebody awake without the ridiculous “no sleeping” rule. We get a hardbacked chair that we are not allowed to fall asleep in, though they are welcome to rouse me awake and see how I respond, should it happen.

We anticipate staying at Le Bonheur through the weekend and hope to return to St. Jude on Monday or Tuesday. It is possible that we could be home at the Target House in a week or so, according to Dr. DeWire, who seemed quite pleased to see Colin looking so good. These facts us alone are a pleasant surprise, much less the prospect that we could proceed to radiation with no reservations about the disposition of Colin’s tumor.

24 Comments »

  1. Oh my goodness!! Unbelievable news! I had just been thinking about you and Colin when the email came through. Yeah Colin!!! Nice job!
    Onward and upward!

    We can’t wait to see all of you again. We’ll be in touch to get the new schedule.

    xoxoxoxo
    Maria

    Comment by mhayduk — January 22, 2010 @ 9:44 pm

  2. Been waiting all day for this update. Now I can breathe a bit easier.

    Comment by Ken — January 22, 2010 @ 9:48 pm

  3. This is great news – THANK YOU for sharing it with us so quickly.
    I started crying during my final savasana during yoga tonight when I finally let my body realize what was happening today. I am so proud of you guys. I am thrilled to hear this news and I will keep my positive thoughts with you for the rest of this process. I know we aren’t there yet, but this milestone is rewarding. Ezra and I are thinking of you and we love you guys!

    Comment by Ezra — January 22, 2010 @ 9:50 pm

  4. and this is Heidi – hijacking Ezra’s login 🙂

    Comment by Ezra — January 22, 2010 @ 9:51 pm

  5. It seems a bit of an understatement to click on “I like this update”. I LOVE this update. Such happy news! Love and Hugs, Diana

    Comment by dinetzer — January 22, 2010 @ 10:04 pm

  6. Wow! yet another huge leap in Colin’s trip home! Huzzahs for the Booper!!!!!!!! His skill, experience, expertize and humanness is a heavy dose of good stuff. Yes and you guys….thanks again for your detail, and lucidity. I will sleep much better tonight as a result of not only the outcome, but the elegance of the reportage as well. You are, without question a writer of the caliber of of John Toland, I am willing to express the hope that, somewhere, somehow, on the other sides of time and space – he is dancing with joy and good old IRISH PRIDE.

    Incredibly, my own puny pain is mitigated by events at The Good Hour.

    rwh

    Comment by Dick Hayward — January 22, 2010 @ 10:25 pm

  7. Glad to hear things are going well! I am well versed in the no sleeping rule, though I am not sure how well it is enforced since they have not bothered me when I have fallen asleep down there. Hope you all get out of here soon!

    Comment by adamfunk — January 22, 2010 @ 10:33 pm

  8. I know I ought to keep my optimism in check, but this sounds like great news and I hope it keeps on coming.
    All the best, Paul

    Comment by Wark — January 22, 2010 @ 10:48 pm

  9. Thanks Tamiko — hugs to all — especially you. I eagerly await a chance to hug Colin… love… judyz

    Comment by judyz — January 22, 2010 @ 11:01 pm

  10. We were so elated to hear the great news today! We are continuing our prayers for Colin throughout this recovery stage. Good job to all of you for making him tumor free!!!!

    Love & hugs, Riye & family

    Comment by riye_aoki — January 22, 2010 @ 11:51 pm

  11. Yes! Fantastic news all around. Now, get back to St. Jude and Target ASAP! The boys can’t wait to see Colin and Aidan!! I think they have a few games set aside for Ian as well. XOXO Press On! Tara, Turner and the Band of Brothers

    Comment by tara — January 23, 2010 @ 12:45 am

  12. Wow, fantastic!

    Comment by gilmer — January 23, 2010 @ 5:57 am

  13. We’re just loving (as we all are) all this good news! We’ll keep praying for Colin for his continued strength as he progresses through his amazing recoveries.

    These kids are truley amazing- they are real life miracles. We all feel powerless as they continue to conquer these mountains.

    Great big hugs to BC(and mom and dad too)! 🙂

    Comment by buppyson — January 23, 2010 @ 8:56 am

  14. Couldn’t ask for a better way to start the weekend!!
    Fabulous news!! Can’t wait to see videos of Colin in action again!!

    Comment by bjmeola@att.net — January 23, 2010 @ 9:00 am

  15. Yay!!! 🙂

    Comment by kulikowski — January 23, 2010 @ 9:46 am

  16. I can’t shut off the faucet of tears of joy at this news. You go, Colin!
    Christina

    Comment by Krysia — January 23, 2010 @ 11:03 am

  17. Wow! I was unable to check the updates during the day but you were all in my thoughts throughout the day. This is amazing. Colin is doing such a great job healing, I don’t blame him for being irritable. It’s wonderful that Colin’s voice is still audible. I find the technicalities of the surgery fascinating and the humility of the doctors there comforting. Thank you for writing and keeping us up-to-date. We will continue to think of you and hope for continued progress. Hugs to all of you.
    -Pam, Jon & Leo

    Comment by pfrost — January 23, 2010 @ 11:04 am

  18. This is such good news! I hope you can all get “home” soon to rest and celebrate this positive milestone.

    Comment by Gabriele — January 23, 2010 @ 11:49 am

  19. How wonderful! We were thinking of you all yesterday, and were so relieved to wake up to such good news. Give a kiss to that feisty little guy for us.

    Comment by Ashley — January 23, 2010 @ 1:29 pm

  20. Glad for the good news!

    Comment by otanduw — January 23, 2010 @ 8:13 pm

  21. What great news! The journey isn’t over, but you all deserve to pause and enjoy this.

    Loren

    Comment by lorenfox — January 24, 2010 @ 9:46 am

  22. Sending hope, love, and support. After reading the wonderful news I was able to exhale.
    fondly, karen

    Comment by karenhorton28@gmail.com — January 24, 2010 @ 2:34 pm

  23. I am so happy and will continue my prayers and blessings.
    All the best guys!

    Ricardo

    Comment by Ricardo — January 25, 2010 @ 2:37 am

  24. Yippie. I’m so happy to read this. All my best to Colin, Aiden, Ian, and you, Tamiko! We are silently praying and offering candles in Cebu (since there is no appropriate church where I live). I can’t wait to tell Alain, she will be very pleased to hear of this!

    Love you guys! If you still need me to come down at any time, I remain at your service! I don’t know if Aiden is still in CT, but wherever the boys are, kiss them for me!

    Comment by markhayward — January 25, 2010 @ 2:54 am

RSS feed for comments on this post. TrackBack URL

Leave a comment

*

Powered by WordPress