One Year Later...
Say that headline in a Spongebob voice please.
It is with shock and awe we land on Sam's one year anniversary of brain surgery. It feels a bit like a first birthday when you have been so in the weeds raising the baby and doing all the things that you forget time is passing.
One year out from a transsphenoidal operation to drain the craniopharyngioma tumor and Sam is a wild and glowing success of medical innovation. Post surgery we learned he was patient number two to undergo the procedure with the dissolving stent. It worked exactly as hypothesized with zero complications. Chris and I are both grateful beyond words to neurosurgeon Dr Todd Hankinson and endocrinologist Dr. Christina Chambers. Science and the humans who push it forward are incredible.
The 'hard outer shell' -- (or candy coating as I've called it)-- remained inside his brain. This is because removing it completely could in fact do more harm than good, specifically to the pituitary stalk. After surgery, the focus of all of Sam's care has been on his experimental therapeutics trial. With the drug we are in trial for, the intent is for the daily medication to keep regrowth of the tumor from occurring.
And although a bumpier road than the surgery itself, the trial drug is also doing its job. Sam's body is monitored extremely closely and some of the side effects have been less than enjoyable. (By classification it is a chemo drug) The tumor has remained stable and everyone on the team, including us are learning how and when to better manage his side effects. In July of this year we did see a heart ejection fraction issue occur because of this medication. And as they had promised us, the trial team pivoted at lightening speed to keep Sam safe and healthy. After a drug pause it was clear the heart issue was transient and the trial team was able to adjust drug dose a bit in hopes of curbing this in the future.
That's a lot of medical detail mumbo jumbo to celebrate that fact that one year from surgery Sam is THRIVING. He is truly doing really well and most days we are simply in a routine that has become the new day to day normal. We couldn't be happier.
The part we couldn't have known, is our love for Colorado Children's Hospital. Sam has now gone on 17 different trips to this hospital and there are many aspects to these trips that we greatly enjoy and Sam looks forward to. The biggest of them all being the Ryan Seacrest Recording Studio there. The team leads in the space, Eric and Cody, have created an environment and vibe that has become Sam's happy place. He grabs the mic, sits down and enjoys every single show. And if for some reason the Recording Studio doesn't fill the time, the children's library, staff therapy dogs, painted stairwells or lego diorama do the trick. Truly a one-of-a-kind extra special hospital and we are so lucky.
Last mention is to the Ronald McDonald House of Denver. The majority of our overnights in Denver are spent here. Again, it makes it all so much more fun. Many folks there have contributed to Sam being comfortable and enjoying the demands of the trial travel.
Thank you for the ongoing support and questions about Sam. We couldn't be more proud of his endurance, resilience and outlook on the past year. Keep up the awesome Sam and CONGRATS on your one year milestone.
Amazing story of and amazing boy, his parents, brother, and medical team. Sending good qi - always - to all of you from me and my entire family.
Aunt Deb
It is such a blessing to hear such a wonderful update about Sam on this one year anniversary. The members of the Moscow United Methodist Church in Moscow PA continue to ask for updates on Sam as he remains on our prayer list. Great job Sam, keep up the good work.