We are just back from a very important and memorable trip to Washington, D.C.! Through Nancy Goodman, the executive director of Kids V Cancer, we learned that some very important legislation regarding childhood cancer research…
Posts tagged Beelieve
March 8, 2025: Another 3 Months to Breathe!
We had very acute scanxiety leading up to this scan, both Christy and I. We aren’t sure why–Alexander is doing wonderfully well. His energy is up, school is going great, and he gets stronger and…
December 6, 2024: No Progression!
Scans show no progression! We just had our brain tumor clinic visit to review his full brain and spine MRI and lumbar puncture results from yesterday. We could not feel more relief to have another…
Sep. 13, 2024: Scanxiety Relief!
Scans show no progression of disease! After the nightmare of May and the extreme uncertainty of June, we are so glad to have the diagnosis confirmed. As we always say, this is not the end…
Sep. 9, 2024: Scanxiety and Gratitude
We haven’t posted in far too long. We have been focused on the moment and enjoying a wonderful summer filled with travel, experiences, and love. We’ll post more about those experiences in another post, but…
Better Than Last June 4!
One year ago today, our lives changed forever. On June 4, 2023, our perfect, beautiful son was diagnosed with aggressive brain cancer, evidenced by a golf ball-sized tumor in his cerebellum. Three of the attached…
Scan Day, Yet Again
Today is our regularly scheduled quarterly scan. We would be very stressed out anyway, but after our experience three weeks ago, our anxiety is through the roof. Even if we are told this scan does…
The Worst News, the Best News, and Nagging Questions and Worry
Many of you may know what happened to us last week, but for those that don’t, let me summarize it. In short, Alexander was diagnosed with a recurrence of disease and given a short time…
March 5, 2024: No Disease Progression!
Alexander’s MRI was yesterday, and we had a long and very stressful wait to learn the results. But the result was what we wanted: no disease progression is evident in the scan! Though we never…
Feb. 24, 2024: DFMO Trial
Yesterday we had an appointment in St. Louis to enroll Alexander in a clinical trial for a maintenance therapy. The therapy does not cure cancer; Alexander has received all the curative options available. This trial’s…