Texas OMS Warrior Fights Back!

Cole was diagnosed with a neuroblastoma and Opsoclonus Myoclonus Syndrome (OMS) in July of 2011 at 15 months old. His symptoms started with a viral infection and fever. Within hours, we began to see neurological changes that continued to progress over the next few days. His initial symptoms consisted of hand tremors, body tremors, and ataxia. He was not walking yet, but he started having difficulty crawling and pulling himself up to a standing position. He was extremely tremulous and irritable. He was initially misdiagnosed with cerebral ataxia due to a viral infection. A week after this diagnosis, I noticed irregular eye movements, staring spells, and sleep abnormalities in addition to his persistent ataxia. These erratic eye movements were what we came to know as opsoclonus. I remember how sad I felt when I realized he had quit babbling in the morning and quit rising up to greet me in his crib.

I remember the world crashing down all around us when we got our final diagnosis. We were told that there had not been much funding or research towards OMS and little was known about the disease or how to treat it. We were also told of the challenges our son and family would face in the future and that the statistics for relapses and long-term disabilities were not in our favor. However, we were blessed that our pediatric oncologist and neurologist had diagnosed and treated OMS before and were able to get us an accurate diagnosis within 3.5 weeks from onset. They were also familiar with Dr. Pranzatelli and his research and the COG study. We were given all the available options for treatment and supported with every decision along the way. I cannot say enough how grateful I am for Dell Children’s in Austin and for the team of doctors surrounding us during that time and currently today.

Immediately after resection of the tumor, Cole was started on high dose daily prednisone, IVIG every 4 weeks, and a full cycle of Rituximab (consisting of 4 infusions once per week). We prayed the hardest we had ever prayed and believed the hardest we had ever believed. With every prayer and every dose, we would see significant improvement. Cole was back to baseline within 4 weeks of starting treatment. He did relapse twice after that and each time we redosed with Rituximab (4 infusions) and switched from daily prednisone to monthly pulses of dexamethasone. On the last Rituximab redose, we weaned him off dexamethasone and finished out that year with IVIG infusions every 4 weeks. Each time we would redose with Rituximab, we would see all symptoms disappear. We were able to wean him off IVIG for a full year. During this time, he started Kindergarten and has been doing extremely well. However, during a follow up with our oncologist in December 2015, we discovered he was not making immunoglobulins possibly due to the multiple doses of Rituximab (this condition is called hypogammaglobulinemia). Since then, we have restarted monthly infusions of IVIG to provide him with some immunity in hopes that he will soon start making his own immunoglobulins. This has been a long journey with many ups and downs. We still hold our breaths if we hear him cough or notice him tripping or notice he is too quiet, but we have never lost hope. With every sad tear I have shed, I have also shed tears of happiness; happiness for watching my son do some of the simplest things in life that many others take for granted. Never lose faith. Never lose hope. {I tell you therefore: Everything you ask and pray for, believe that you have it already, and it will be yours- Mark 11:22-25}