Freddie's Fight Against Neuroblastoma

Freddie and I traveled to Cincinnati the second week in March to meet Fred’s radiation oncologist and have some preliminary testing done. He’s going to receive radiation to the primary tumor bed (his left adrenal) to lower the risk of local recurrence. Even though he had a complete resection at diagnosis, the standard of care still involves radiation. He had to have a CT simulation scan while we were there, which is just part of the planning process. Fred is going to receive proton radiation which, compared to photon radiation, is a more targeted therapy that limits the damage to surrounding tissue. In someone Fred’s size and age, limiting unnecessary radiation to healthy tissue is really important. However, the therapy isn’t offered here in Buffalo, so we’ll be temporarily relocating to Cincinnati for it. There’s a 10-14 day turnaround time from the day of the consultation, during which the radiation oncologist plans exactly where to radiate. Since it’s a lot of behind-the-scenes work at this point, we headed home after touching base with the medical oncology team the morning of Friday, March 13.

We arrived home around 5:30pm and by 8pm that night, Freddie had spiked a fever. Since he’s within 100 days post-transplant, he remains at high risk of infection. I loaded our suitcases from our trip to Cinci back into the car and we headed for Children’s. Labs, including blood cultures, were drawn and he received a dose of antibiotics. His labs showed a low hemoglobin level, and his heart rate was ranging from 190-200bpm at rest (normal for his age is around 90-130bpm). Because of his anemia and tachycardia, we were admitted for observation and a blood transfusion.

By the time we arrived to the oncology floor (~2am), Fred was totally back to his normal bubbly self! He received a bolus of IV fluids which really perked him up, and the blood made him feel even better. He looked so good in the morning that our attending cleared us for discharge by noon. We packed up to head home and were literally walking off the unit when the lab called our nurse to let her know Freddie’s blood cultures were positive. We turned around and settled back into our room. We were devastated, especially since Freddie looked so good and he wasn’t even neutropenic. It goes to show you that in those first 100 days post-transplant, infections really can pop up out of nowhere. He ended up growing two separate resistant bacteria in his blood, likely translocated from his gut. Thankfully, both bacteria were sensitive to the same antibiotic (cefepime), so we were able to be discharged a few days later to continue IV antibiotics at home!

Because of the multi-organism bacteremia, Fred’s radiation has been delayed. We’re now slated to start April 1, after completion of antibiotics. Until then, we’re hoping for a very uneventful few weeks with no unplanned hospital visits!

Our love to you all!
The Reichards