Stable Scan, Big Adventures
We’ve had a full and wonderful summer together, and we’re so grateful for the memories made. Jack’s health has been stable overall. His breath-holding episodes returned—not as intense as in past years, but enough to remind us of the condition that we often try to pretend isn’t part of our everyday lives.
The highlight of the summer was seeing Jack out and about with us. A year ago, we were leaving him home while cheering on the girls at sports games—this year, he was right there on the sidelines, the ultimate brother-fan (or snack-fan if we are being honest). He loved his weekends at Great Wolf Lodge and Hershey Park, but most of all he enjoyed endless time in the pool and playing outside.
We ended the summer with an epic adventure out west to Wyoming and Montana. Jack amazed us with his resilience, as we learned that higher altitudes made his breathing harder. He needed oxygen almost the entire trip, but we didn’t miss a beat—thanks to Johns Hopkins swooping in overnight with a replacement concentrator after ours broke the moment we landed (of course!).
Nothing like glamping with no electricity - and keeping this little o2 concentrator powered all night.
Yes, Jason slept in the car while it charged since the battery packs were not holding charge…
WE SURVIVED AND LEARNED A LOT AS PARENTS THIS TRIP.
(And people wonder why we drink…)
This week, Jack had his first MRI with contrast in almost two years. The results show that after all these years of daily chemo, his tumor remains stable—no growth, but also no shrinkage. We are grateful for stability, but we’d be lying if we said we weren’t hoping for a little more. For now, we’re waiting as his doctors review the images in detail to see if there’s any chance what remains is scar tissue instead of tumor. In a meeting with Dr Cohen a few months ago - he stated that this scan could help us determine if we should start tapering back on the meds, because the tumor was going “dormant” - but until we meet with him again, we will keep doing what we are doing…
One of the sweetest gifts this summer has been watching the girls grow even closer. Whether they’re making up dances, skipping through life side by side, or cheering on Jack together, their bond has deepened in ways that remind us things truly do happen for a reason - and they were meant for each other, and for us.
We are so thankful they have one another—and that everyone around us loves and cherishes them just as much as we do. We are so lucky to have the amazing sports families around us who constantly carpool & take the two of them as a part of their own families when we - or they - need it the most.
Through it all, Jack continues to push forward.
He’s starting 1st grade this fall, Vivian heads into middle school, and Rylan is off to 4th grade.
Only year they got to enjoy school together <3
Thank you, as always, for standing with us, praying with us, and cheering for Jack.
Your love continues to lift our family in ways we can never put into words. 💛
