Freddie's Fight Against Neuroblastoma

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 high-dose chemo with stem cell rescue. This time, he received three chemos (carboplatin, etoposide, and melphalan) on days -7, -6, -5, and -4, then days -3, -2, and -1 were “rest” days. The stem cell infusion (day 0) occurred on Friday, January 23rd. The preservative his stem cells were frozen in caused him to be really nauseous during the infusion but aside from that, he tolerated it well!

The chemo drugs this round have caused pretty bad nausea, vomiting, mouth sores, and mucositis. We attempted to keep him on formula feeds via his NG tube (after switching off breast milk due to a cows milk protein allergy he developed after the first stem cell transplant), but he was vomiting nearly half of what we were feeding him. Knowing that the nausea would likely get worse before it got better, we switched him to TPN (total parenteral nutrition), which is nutrition via his central line. We also switched his oral medications to IV to give his stomach a little break.

Fred also spiked a fever on day -1, and blood cultures drawn as part of the neutropenic fever workup showed bacteria growing from one of the lumens of his central line. The bacteria, Staphylococcus epidermidis, is normally found on skin and is a common cause of infections when a central line is present. He completed courses of two antibiotics, and subsequent blood cultures showed no growth.

On day +8, we started to see count recovery! With that, a lot of his symptoms began to improve. He’s still struggling with thick mucus in his GI tract; we suction him when we can but he still vomits a few times a day to clear it out. The mouth sores are getting better, but he still needs some narcotic pain medicine throughout the day. It’s amazing though; once we began to see his white blood cell count increase, his energy level shot up. He was wanting to play on his mat and walk his pump around the room. We always hear “kids are resilient,” but it’s another thing to see it real time. He still has some recovering to do this week inpatient, but we’re hoping to come home before too long!

After he recovers from this round, he’ll get 12 days of radiation to the primary tumor bed site (above his left kidney). We’re opting for proton therapy, which is more targeted and has less scatter, ideally sparing the healthy tissue surrounding his primary tumor bed. This type of therapy isn’t offered everywhere, so we’ll need to travel to Cincinnati Children’s Hospital for it. Thankfully, we’ve already connected with providers at CCHMC for a second opinion earlier on in Fred’s treatment, so we’re not entirely new to their system. Additionally, my sister-in-law is a provider at CCHMC, so Fred and I will get to stay with my brother, SIL, and Fred’s adorable 2 year-old cousin while he receives his treatment! After radiation, Fred will get re-staged to assess disease. This will include CT scans, MIBG scan, and bone marrow biopsies. Since he’s in remission now, we’re again hoping for no evidence of disease.

This second transplant marks the end of chemotherapy for our guy Fred! He still has roughly 6 months of immunotherapy ahead of him, but he doesn’t have any more (planned) chemo treatments. He continues to amaze us with his strength and positive attitude, and Evie has been the best, most supportive big sister through it all. We’re so eager to be all together again, and I hope the next update comes after we’re back home and recovering without any further hiccups.

We appreciate everyone’s continued prayers and support! Our love to you all,

The Reichards