Freddie was scheduled to be admitted to Children’s from September 10-15 to receive his fifth and final cycle of post-consolidation immunotherapy. In typical Freddie-fashion, he decided to spend a little extra time with his friends on the 12th floor… He spiked a fever the evening of September 4th, so we ventured back to the Children’s…

Freddie had a CT scan of his torso and an MIBG scan done at the end of July as a bit of a sneak-peak restaging. Thankfully, he continues to have no evidence of disease! He didn’t have a bone marrow biopsy this time around, but he’ll have the full restaging workup (CT head and torso,…

Freddie was admitted for his second and third cycles of dinutuximab (immunotherapy that targets neuroblastoma cells) from June 19-23 and July 17-21. In stark contrast to the first cycle, Freddie *flew* through these ones! In the past, he developed hypotension, high fevers, and seemed to be in a good deal of pain. Now, we joke…

Fred was admitted on May 22 for his first cycle (this time around) of immunotherapy, dinutuximab. This is the same drug that he received in the fall during the induction phase of his treatment. It targets any remaining neuroblastoma cells in his body and flags them for his own immune system to attack. Because its…

Fred was admitted on Friday, April 24th, after spiking a fever and was found to have positive blood cultures (bacteria in his blood). The organism was identified as Delftia acidovorans, a rare pathogen even in immunocompromised patients. Our infectious disease team had only seen it one other time in Children’s here in Buffalo. While it…

Fred was admitted mid-March for a fever, and was found to have positive blood cultures. We were discharged on March 17th with plans to continue IV antibiotics at home, but blood cultures drawn on the day of discharge popped up positive 3 days later. We were readmitted on March 20th to have his central line…

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…

It’s been so long that I had to reread my last post to remind myself what was happening the last time I published an update! Fred stayed inpatient for another week, and was discharged home on February 9th. His main issue at the time of discharge was nausea and vomiting due to the thick mucus…

Fred was 7 months and 2 weeks old when he received his cancer diagnosis. Yesterday marked 7 months and 2 weeks from the day he was diagnosed. He has now officially been battling neuroblastoma longer than not, and he’s not done yet! We were admitted on January 15th (day -8) for his second round of…

I’m not exactly sure why it’s taken me so long to write this update. I think (a big) part of me was worried that I’d jinx Freddie’s recovery if I talked about how well he was doing. Long story short, Freddie did much better than anyone (health care team included) expected him to! Throughout the…