Freddie's Fight Against Neuroblastoma

Follow along with Freddie as he battles stage 4 high risk neuroblastoma.

We were discharged home on Saturday, 7/26, after Freddie completed cycle 2 of induction chemoimmunotherapy, but the following Sunday and Monday were pretty rough for the little guy. The majority of his symptoms were attributed to the immunotherapy he received the week prior, including nausea, vomiting, rash, and a generally cranky attitude. However, Tuesday morning, he completely turned a corner! He woke up in the middle of the night, fully ready to party. It was nice to have our little Freddie back.


On Wednesday, 7/30, Fred had a PET/CT scan. There’s one lesion on his jaw that was picked up on the initial CT head/facial bones that lead to his diagnosis, but it wasn’t well-visualized on his MIBG scan that was performed back in July. It’s very close to his salivary gland on that side, and since the salivary gland “lights up” on MIBG, it ends up camouflaging the lesion. That being said, our primary oncologist wanted to see how the lesion appeared on a PET scan in order to determine the best imaging modality to follow moving forward to track his progress. The PET scan results really didn’t pick up much tumor activity at all, but it’s hard to tell whether it’s just a poor imaging choice for his specific disease, or whether his cancer has already responded favorably to treatment. Obviously, we’re hoping for the latter, but without a baseline PET scan to compare it to, it’s just wishful thinking.


About 7 hours after the above photo was taken on 7/31, Freddie spiked a fever of 101.6º. Since we already knew he was neutropenic from labs drawn earlier in the day, we knew this meant admission for IV antibiotics. We packed up and headed back to Oishei Children’s that night. Blood cultures drawn in the Emergency Department grew Staphylococcus aureus bacteria, plus a nasal swab revealed he also had rhinovirus. Freddie has a dual-lumen central line that remains in place even upon discharge because he needs frequent blood draws and medication administrations. It’s medically necessary, but does pose an infection risk, and we’re assuming it was this access that introduced bacteria into his bloodstream. Once the bacteria was identified and Freddie received 36-ish hours of IV antibiotics, he stopped spiking fevers and clinically improved tremendously. He’s been having a great time in the hospital this admission, smiling at and giggling with everyone who comes into his room.

His counts (WBC, neutrophil, platelet) are increasing slowly, and he still needs to have stem cells collected in preparation for his tandem stem cell transplants later on. Because his blood cultures from the last 3 days have been negative, we’re safe to collect the cells now. We’re planning on the collection tomorrow (8/6), barring any hiccups in the meantime. After our transplant oncologist confirms enough cells have been collected, we’ll be discharged home tomorrow evening. However, because he grew S. aureus, he’ll need 10 total days of IV antibiotics to complete treatment. We’re lucky enough to be able to administer these at home via his central line, and we’re all very excited to spend some time at home before cycle 3 begins next week.

One thing we’re learning is to be flexible and ready for admission to Children’s on any given day. We’ve been incredibly blessed with amazing support from friends and family, and Evie is enjoying lots of quality time with her grandparents, aunt, uncle, and cousin Vivi! Here’s hoping the next update is less eventful than this one…

Our love to you all!
The Reichards

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