About Riley Higa Fundraiser
Riley was like any typical toddler, reaching her milestones, going to daycare, and not showing signs of slowing down. However, in early 2023, she showed signs of discomfort, loss of appetite, unmotivated to play, and belly extension. I’ll never forget that morning when the pediatrician called me to bring her into the ER immediately. Her blood results showed high liver enzymes. Within hours, after ultrasound and CT scan, I was told she had a mass and was escorted by ambulance to the nearest children’s hospital.
March 16, 2023, Riley was diagnosed with Stage 4, High Risk Neuroblastoma. Because the tumor was squeezing her bile duct, surgery was immediately needed to place the drainage. Biopsy, sample of bone marrow, and scans showed the disease already metastasized throughout her body. 2 weeks before her 3rd birthday, we were thrown into the unknown.
Immediately, I asked myself, what did I do wrong that my child must go through this. Why didn’t we detect this sooner. The answer is, we can’t. “Silent Monster” is what they called neuroblastoma. We had no choice but to fight with her.
Neuroblastoma protocol is grueling, intensive, and outdated. It includes 5-6 rounds of chemo, surgery, stem cell transplants (2x), radiation, and immunotherapy. This is only if they respond well. Many times, it’s the treatments that harm our kids with short- and long-term side effects.
Through prayers and God’s guidance to educate and advocate, we found Memorial Sloan Kettering. The thought of traveling from the west coast to the east coast so frequently can seem daunting but we see hope. We see a team of world-renowned doctors that care about our children. We see treatments and clinical trials that increase children’s probability of long-term survival. We see no stem cell transplant with the same chance of survival. This is all thanks to Band of Parents and supporters like you.
Currently Riley is at MSK doing Immunotherapy then the vaccine to hopefully train the body to attack NB cells. She went through 7 rounds of chemo, a 16-hour tumor resection surgery, 3 rounds of chemo-immunotherapy, and proton radiation. She showed us what #RILEYSTRONG is.
Our hope is to hold future families and tell them, there is a cure, and you will be ok. Thank you for supporting Riley and the other warriors fighting this battle. Thank you for giving our children hope for the future.
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How Your Support Makes a Difference
With your support, we can find a cure for neuroblastoma, while reducing the highly toxic nature of treatment.
Band of Parents' mission is to seek projects that have already been examined in the lab and are in need of assistance to rapidly move into a patient population. In the 1980s, fewer than 5% of children diagnosed with high risk neuroblastoma survived. Although today, most major medical centers have over a 50% survival rate, far too many children are still dying of this disease. The sad fact is that due to the high cost of research and the small number of children diagnosed annually, pediatric cancer is severely underfunded by both the pharmaceutical industry and the federal government. Less than 4% of the National Cancer Institute’s funding goes to fight pediatric cancer. We support our members through their children’s battle with neuroblastoma. Together, we are Bound by Hope that a cure is out there. We will continue this fight until not a single child is lost to this disease.