Valen’s OMS battle began in February 2012. Within two days, Valen went from a happy toddler who loved to walk, talk, and jump to an OMS warrior who was immobile and could not stop shaking. Initially diagnosed with Post Infectious Ataxia, Valen initially made progress, but then regressed again. Finally diagnosed with OMS, Valen began treatments by Dr. Wendy Mitchell at Children’s Hospital L.A. Like a number of OMS children, for months, doctors could not find cancer in Valen. But eventually, a tumor was found a few months later. After surgery, Valen continued to make progress in his OMS battle. Like many OMS warriors, Valen had a port put in to make infusions easier for him.
Valen’s treatment protocol of chemotherapy, ACTH ( a high dose steroid), and IvIG stabilized his OMS and helped him to slowly make progress. Despite steady progress after surgery in 2012, Valen experienced a second tumor in the summer of 2013. Like all OMS warriors, getting regular MRI, MIBG, and CT scans are part of the routine. It was during one of those routine scans that a tumor was found once again in the same place as the previous year. Once again, surgery removed Valen’s tumor. Valen’s OMS battle is an example of the constant ups and downs that is experienced. Infections, tumors, scans, surgeries, frequent hospital visits, and expensive drugs with inconsistent results are all part of the OMS battle for these toddlers. His battle continues as he is tapering medications and continuing scans for more tumors.
Today, as he soon turns six years old, Valen still has some challenges with OMS. But, Valen is a fighter and determined not to let this slow him down!
Valen and his family host an annual teddy bear drive to provide teddy bears for the kids at Children's Hospital Los Angeles and research funding for The OMSLife Foundation. Thank you Valen!!!!