Good News!
- Jess Dyroff
- Apr 29
- 3 min read
Somehow we blinked and hit our six month ETP (Experimental Therapeutics Program) trial mark with the brilliant team at Colorado Children's Hospital.
Last week we had our second "long" visit which means Sam had a full set of scans over a two day period. He continues to be an absolute rockstar at being a patient. He does still despise blood draws and IVs but each time gets a little bit easier it seems.
The scans allow us to see an MRI, ophthalmology imagery of optic nerves, EKG, Echo, set of labs... and meet with the full extended team on progress. We are super excited to report that Sam has been defined as "stable disease" which we were told were words to be celebrated. The brain surgery procedure AND the daily meds from the trial are currently keeping his tumor from regrowth. The tumor itself is (and could always be) present in his brain but as long as it isn't growing, it isn't a problem and can coexist happily how it is. This is the "chronic disease" portion of this journey and remaining stable means everything we are doing, and Sam is going through, is WORKING. The crazy innovative surgery and this drug trial are doing everything the science could ask it to do. And I continue to return to the first month or so of this diagnosis when a doctor along our journey said "this is life altering, not life ending"... And how grateful we are for this mindset and incredible options available to us along the way.
Symptoms Sam is experiencing – beyond the monthly travel to Colorado – are extremely sensitive skin and a change of hair color. The sensitive skin has been a big learning curve for all of us. Specifically his fingers and nail beds are delicate and very susceptible to infection. Sam has also had larger areas becoming chafed in 'hot spots'. At the end of February Sam experienced a finger infection that landed us in the peds office with major questions of wound care, antibiotics and a need to pause the trial med temporarily for his body to fight the infection. Shoutout to the network of moms and friends we tapped into for suggestions alongside the doctors visits. Ultimately a texted 'mom thread' suggestion really helped us turn a corner and has become part of our daily routine. We're hopeful to avoid this happening in the future have new daily routines and remedies to keep the sensitive spots from becoming infected.
Sam's hair is also growing in white. Which is SO COOL! The drug is actually blocking the pigment receptors of his new hair growth. Sam is mostly unbothered by this so far and doesn't impact the day to day. Interestingly enough he is one of three children in the trial with this change occurring!
Life on trial is becoming more and more normal. We are getting used to the ebb and flow and the travel. We have developed a strong bond to the team at the Denver Ronald McDonald House and stay there most trips. The staff, volunteers and consistency are such a warm and welcoming feeling. Sam's rituals and little ceremonies for his appointment days have inspired my own daily consistencies. He doesn't like it but he participates, tries his best and is brave beyond belief.
Most often we continue to feel gratitude for the trial and the incredible med team we are partnered with through these cycles. The innovation and science of it all is truly life changing. We have 19 more trips to Colorado and that number doesn't scare us nearly as much as it used to!
Thank you for the continued support, prayers and cheers for Sam's brain weed journey!
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