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…
Feb. 13, 2024: Last Day of Chemo!
We are in the hospital right now for Alexander’s final chemo infusion! It hasn’t yet sunk in that he won’t have any more chemotherapy. The last 8 months of our life have revolved around Alexander…
Feb. 8, 2024: The Last Cycle
Yesterday we got home from inpatient chemo for the last time. Alexander still has an outpatient chemo infusion next week, but it is a good feeling to know that we are not facing any more…
HAPPY BIRTHDAY, ALEXANDER! (Oh, and start of chemo round 5)
Alexander is 5 years old today! As I write this, he is almost exactly 5 years old, born at 9:45 pm Eastern on January 10, 2019. Nothing (except Charlotte’s birth) could match the joy we…
Home for Christmas!
When we came to the hospital a few days ago, it seemed like we had enough time for Alexander’s counts to allow us to be discharged before Christmas. But then, as time wore on and…
Back in the Hospital
We thought, after two rounds of chemo with no fevers, that we might avoid unexpected hospital stays for the rest of chemo. Nope. On Tuesday night, after a low-energy day, Alexander showed signs of a…