Goodbye 2025! Hello Consistency?...

Sam just completed his second set of labs in Denver and we are excited to confirm the med is being tolerated by his body and all signs confirm continuation of the trial. We will have a full set of tests (MRI, EKG, Echocardiogram, Ophthalmology, Labs) done during a multi day visit to CO Children’s at the end of January. The intent with this quarterly series is to see tests return similar to the baselines set at the beginning of November -- and Sam’s stent (which is really the hole remaining from the scar tissue) continuing to drain tumor fluid!

2025 was the roller coaster we never asked to ride. We had the highest of highs and some of the most memorable days. Our intent to 'flood the zone' with positivity and fun was something we absolutely executed. And the ways in which our community showed up with for us for these memories will live in my heart forever. These highs were matched by our hardest, longest, and most terrifying days. The resilience of Sam was tested beyond measure and he may never realize just how incredibly tough he was through the hard days. Feeling it and letting the hard stay right where it lies in 2025. 

One special moment I want to be sure and capture happened just before Thanksgiving. The 2nd grade class at Sam’s school had put together ‘goody bags’ for helpers throughout the community. Many were delivered to crossing guards, firehouses and police stations. We snagged the delivery to Children’s Mercy South ER. As serendipity would have it, the doctor (Dr. Shipman) who had diagnosed Sam in July was on shift during our goody bag delivery. Both Chris and I were able to shake his hand and give him positive news on Sam’s journey and current prognosis. The doctor and staff were all so excited to hear the update and receive their goodies. Such a memorable full circle moment.

Reality of early December was sickness taking over the house. We quickly realized sick is going to look a little more serious for Sam and his bounce back takes quite a bit longer than we have been accustomed to. Let the records show we had Flu A, Strep and Flu B move through the house in a 15 day span between both boys. Really thankful for Sam’s med team keeping us informed on options and meds to get him through things safely. The clouds finally lifted and Sam was able to return to the last week of school before Christmas break. It was really good sign that the period of sickness didn’t impact his labs at the end of the month. 

We are happy to put all that 2025 tested us with behind us and welcome in 2026. Although we wouldn’t wish this brain weed on anyone, we are full of gratitude for the outcome of our scenario. Sam's health and stability is intact and the medical innovation making this possible is nothing short of incredible. The plan is in place moving forward and we are feeling really good about the routine. Our hope for the year ahead will be continued health and consistency for our ‘new normal’ as a medical family. 

Cheers to happiness and health for all.