Freddie's Fight Against Neuroblastoma

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 didn’t make Fred particularly sick, it was really difficult to clear out of his system. His blood cultures were positive on Friday, Saturday, Sunday, and Monday. ID told us that if another culture was positive, we would need to have his central line pulled (again) and give him IV antibiotics through a peripheral line for a few days before placing a new one. Bacteria tend to embed themselves in anything foreign or plastic in the body, and antibiotics aren’t able to effectively treat it. This was the case last month when he got an infection in his blood, most likely from his gut, and his central line needed to be replaced. Based on this organism and Freddie’s history, ID gave him a 30% chance to clear the infection and keep his line. To my surprise, Freddie did just that! He had no further positive cultures after 4/27 and we were discharged home this past Friday after Fred’s re-staging scans. We’ll continue IV antibiotics through his central line for a few weeks and have blood cultures drawn after he finishes the meds to ensure he cleared the infection.

In other AMAZING news, Fred’s CTs, MIBG, and bone marrow biopsies show no evidence of disease yet again. He made it through the roughest part of his treatment course and remains in remission!! We’re are beyond thrilled, and just so proud of our little man.

We’re working on increasing his oral intake now so that hopefully soon, we can remove his NG tube. He’s had the feeding tube since September, so it’s going to take some time to get his eating up to speed.

Next, we’ll begin the first of six cycles of immunotherapy. Each cycle is 28 days, so we’re looking at about six more months of treatment. He’ll spend five days inpatient each month, but hopefully gets to spend the remainder at home.

Thanks for keeping up with Fred’s journey, and for all of the love and support!
The Reichards