Freddie's Fight Against Neuroblastoma

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 purpose is to stimulate an immune response, it can cause fevers, hypotension, and tachycardia among other things. It also causes nerve pain, so Freddie remains on a continuous morphine infusion while receiving dinutuximab.

The immunotherapy drug is given slowly, over of span of 10-20 hours, depending on what rate the patient can tolerate. Because he had been exposed to the drug before and tolerated it relatively well by the end, I was hoping that he would pick up where he left off in October. However, Fred struggled with hypotension overnight which required us to pause the infusion and bolus him with fluids. The drug also makes him extremely puffy, and the extra fluids didn’t help. He needed Lasix multiple times throughout the admission, but he required that in the past as well. Then, he was too sedated to protect his airway so we battled oxygen desaturations overnight as well while trying to find the right dose of morphine. It was a challenging admission, but he battled through it. We were discharged home on May 26, and Fred dealt with some nausea, vomiting, and diarrhea for about a week. This past week though, he really seemed to turn a corner and perked back up to his normal, happy Freddie self!

He receives injections (Leukine) to ramp up his immune system before, during, and after immunotherapy, then also receives an oral medication that differentiates neuroblastoma cells and causes them to mature into normal nerve cells. The oral medication, Accutane, makes him pretty cranky and nauseous, but he’s such a happy kid and really doesn’t let much keep him down. In summary,

Days 1-14: Leukine (injections)
Days 4-7: Dinutuximab (immunotherapy), admitted to the hospital
Days 11-24: Accutane (oral med)

It’s a busy schedule, but we’re just happy because he can receive the majority of treatment at home! He’ll be receiving this treatment regimen every 28 days for the next 5ish months. After that, we’ll re-stage again and pray for clean scans.

It’s so hard to believe that this life filled with medications, side effects, hospital admissions, clinic visits, dressing changes, and tube feeds has been our reality for almost a year. I’ve never been so amazed at anyone’s strength and resilience as I am when I look at Freddie.

It’s also hard to put into words how much everyone’s support and prayers have meant to us thus far, but please know how incredibly grateful we are for all of you. Thank you so much, for everything. We hope everyone has an amazing summer!

Our love to you all,
The Reichards