Freddie's Fight Against Neuroblastoma

After seven nights in the hospital, we’re home! Freddie’s blood cultures were [again] positive for Staphylococcus aureus and his respiratory panel was positive for rhinovirus. He was positive for both of these bugs back in August when we were admitted after cycle 2. Since this is the second time he has been positive for S. aureus, the plan is to complete 14 days of antibiotics then redraw blood cultures after he’s been off the meds for a few days. If his cultures are positive, his central line will need to be removed (as it’s likely harboring bacteria) and replaced, but if they’re negative he can keep his line. Our fingers are crossed for the latter!

Another issue during this admission was Fred’s weight. He weighs roughly the same as he did when he was diagnosed back in June, and seems to be eating less with each subsequent chemo cycle. Because of this, Freddie had a nasogastric (NG) feeding tube placed on Wednesday, 9/17. It goes into his nose and down into his stomach, and allows us to feed his belly even when he doesn’t feel up to eating. He developed some mouth sores this round, and those prevented him from wanting to eat or drink much. That being said, having the feeding tube in place was extremely helpful for the first few days. Since his counts improved, he has been wanting to eat and drink much more! We’re still using the tube to give some supplemental feeds to try and get his weight up, but it’s a bit difficult to determine how much to give him since his oral intake improves each day. Regardless, it will come in handy for this next cycle (due to start 9/29) which includes the same meds as cycle 3, and causes pretty persistent nausea/vomiting.

After a rough few weeks, Freddie is 100% back to his normal, happy, bubbly, goofy self! We’re soaking in the time we have together at home as a family this week and gearing up to start the last cycle of induction chemotherapy on Monday.

Love,
The Reichards