Freddie's Fight Against Neuroblastoma

Shortly after the last post, Freddie did spike a fever overnight and we headed back to the ER at Children’s. Thankfully blood cultures were negative, but he was still testing positive for rhinovirus. This virus is apparently pretty notorious for ramping back up when counts drop, so when Freddie got neutropenic, the virus resurged and caused a fever spike. We were admitted for less than 48 hours and Fred was no worse for the wear!

Freddie began cycle 4 of chemoimmunotherapy on September 4th. This cycle consisted of three chemotherapy drugs (vincristine + doxorubicin + cyclophosphamide) on days 1-2 and his usual immunotherapy drug (dinutuximab) on days 2-5. Freddie really surprised us all during the infusions and tolerated them SO well! The dinutuximab is infused over 14-ish hours and Freddie remains on a morphine drip while it’s running to help control pain. The morphine usually sedates him and he sleeps the majority of the week, but this time around he was up and playing on days 4-5!

He had his usual symptoms of fluid overload (especially with all of the hydration that accompanies the chemotherapy) and fevers, but these were well controlled with diuretics and Tylenol. Overall, I’d say he flew through days 1-5. We were discharged on September 9, and the first few days home went pretty well. Aside from being awake every hour or two around the clock, Freddie was handling things like a champ. On Friday (9/12), we noticed that he developed some mouth sores. It’s a typical side effect of the chemo he got this round, but we were still hoping he’d get away without too bad of a case. His platelets also bottomed out this day so we headed into the peds clinic for a unit of platelets.

His mouth pain made him less inclined to eat solids, and this only worsened over the next few days. He started having low grade fevers as well, but didn’t spike high enough to warrant admission. At this point his white blood cells were and remain extremely low, meaning he has little to no defense against infections.

Sunday night (9/14), his mucositis (mouth sores) was at its worst and he struggled to take much of anything by mouth. We also didn’t want to give him around-the-clock Tylenol as this may mask a fever (a neutropenic fever is a medical emergency), but the poor guy was really hurting. We got through the night and his intake picked up a bit, but Monday labs showed he needed both blood and platelets. We headed back into the peds clinic for transfusions, but he spiked a true fever right before we were headed home.

We were admitted to Children’s yesterday, 9/15, and preliminary blood cultures show growth from one of the lumens. He’s also rhinovirus + again (after actually testing negative on day 1 of cycle 4!), so there are a few possible sources of infection causing the fevers. We’ll be here until his counts recover and his infections are treated, but he’s in pretty good spirits and starting to eat more.

Otherwise, we’re doing well! Adam hung out with Freddie this past weekend at home, while Evie and I had a blast at our cousin Sunny’s wedding.

Looking forward, Freddie’s due to start cycle 5 on September 29. After this, we’ll restage and see how his disease is responding – repeat CT head/facial bones, CT abdomen/pelvis, bone marrow biopsies, and MIBG scan. If he’s in remission, we should be cleared to proceed to his first auto stem cell transplant at the beginning of November.

If you’ve made it this far, thank you for caring and following along with little Fred! Your love and support keeps us going, and we appreciate you all so so much.

With love always, The Reichards