Freddie's Fight Against Neuroblastoma

Freddie has officially completed cycle 2 of induction chemoimmunotherapy! He received chemo alone on day 1 of the cycle, followed by chemo and immunotherapy on days 2-5. In the grand scheme of things, he tolerated it well!

As we were forewarned, it was tricky trying to find the rate/dose of morphine that controlled the infusion-related pain without sedating him too much. The infusion runs for anywhere from 8-20 hours, depending on what the kiddo can tolerate. The first night, Fred maxed out the dinutuximab rate, but his morphine dose was probably too high; Adam and I spent most of the night repositioning him and waking him up so that he could clear his airway and breathe normally. Fred’s most problematic side effect seemed to be the increased fluid retention and oral secretions —> oxygen desaturations. Once we got a diuretic on board and lowered the rates of the medications a bit, the subsequent nights were much better and we were even able to sneak in some solid stretches of sleep.

These admissions aren’t easy, but Fred has continued to be a real inspiration to us. He was pretty sleepy throughout the entire stay, probably due in large part to the medication side effects and around-the-clock Benadryl doses. When he was awake, however, he’d flash us his little Freddie smirk and even reach for us to pick him up. We’re happily at home recovering now and enjoying more time with Evie!

Next up, we have a PET scan on 7/30, followed by stem cell harvest on either 8/1 or 8/4, depending on his counts this week.

As always, thanks for following along and we love you all!

– The Reichards