Lyla F.

Lyla was diagnosed at the end of March in 2024 with neuroblastoma. She had a 13.5cm tumor with lymph node involvement.

During the first month of her diagnosis she was admitted in the PICU due to fluid on her lung as a result of the large tumor. She ended up on a ventilator for 24 hours and thankfully recovered after receiving her first round of chemotherapy. She received a total of two rounds of chemotherapy at Nemours Orlando, along with a stem cell harvest.

In June, Lyla traveled to MSK in NYC to have a 12hr tumor resection surgery. One week later, she received an intense round of ICE chemo.

Lyla started a combination of chemotherapy and immunotherapy in July and is currently on her 3rd of 5 rounds. She will undergo radiation in November.

Update October, 2024:

Lyla's last scheduled treatment therapy will be radiation at Memorial Sloan Kettering in NYC. MSK offers proton radiation and is one of the most experienced hospitals for treatment of Neuroblastoma. 

Since her tumor resection surgery and ICE chemo, Lyla has undergone 5 cycles of chemo and immunotherapy together. This consisted of chemo on days 1-5 and immunotherapy in the afternoon for 12 hours each day (days 2-5). This treatment was especially hard on her the first three cycles. It took her nearly a week to recover after each cycle and she stopped walking due to weakness and neuropathy. Immunotherapy is extremely painful, and she was placed on a PCA pump for those 4 days. We also had to make the decision to place an ng tube for Lyla due to her severe weight loss. This was a hidden godsend as it has been a huge lifesaver for her nutrition and health.