Freddie's Fight Against Neuroblastoma

Freddie ended up spending 3 weeks in the hospital during cycle 5, given his slow count recovery. No infectious source was identified to account for the fever on day 6 so once his counts began to improve, we were able to go home!

During our extended stay, Freddie had restaging CT scans of his head, facial bones, and abdomen/pelvis, and these showed no disease. Specifically,

“The aggressive periosteal reaction and hair on end appearance from the prior study has resolved. No new lesion identified.”

and

“Interval resection of neuroblastoma. No definite recurrence identified within the chest, abdomen or pelvis.”

There have been a few moments during his diagnosis and treatment where I felt like I had the wind knocked out of me, and all I could focus on was holding and kissing Freddie; the first was when the ER resident told us it looked like cancer, the second was when our oncologist told us his tumor was MYCN amplified and therefore, high risk. Both of these moments were heartbreaking and overwhelming. This time, I was holding Fred knowing his bony metastatic sites were healing and no other sites of disease were identified. Again overwhelming, but in the best possible way. He’s doing it!

Later that week, Freddie had his repeat MIBG and bone marrow biopsies. As a refresher, MIBG is a nuclear medicine scan used to identify neuroblastoma tumors/metastases, among other cancers. The score ranges from 0-30, 0 being the best. Freddie’s previous scan in July scored a 3. His most recent MIBG showed no sites of disease (Curie score 0), and his bone marrow biopsies showed no evidence of metastatic disease! More amazing news. Freddie had a complete response and is officially in remission!

Given that Freddie’s primary tumor was MYCN-amplified, the risk of relapse is relatively high. In cases of high-risk neuroblastoma, the standard of care is induction chemotherapy (which he completed), tandem stem cell transplants, then immunotherapy. He had the best possible response to induction, but that doesn’t change the course of action. Fred’s greatest chance of beating this for good is to knock it down now, not allowing the cancer a chance to relapse. So on to stem cell transplants we go…

Because of our extended hospital stay during cycle 5, our team pushed back Freddie’s first transplant date to give us some more time at home to recuperate. The plan now is for admission on November 24th and stem cell infusion on December 2. He still has his NG tube in, which we’ve been using for supplemental feeds in an effort to put more weight on him. Otherwise, Freddie is the happiest, smiliest, goofiest little ONE year old! He’s really starting to get mobile now, and I fear there will be no stopping this kid 😄. We feel so incredibly lucky to be Fred’s family, and don’t take a single day for granted. As always, thank you for all of your continued support!

Love,

The Reichards