“Mr. & Mrs. Thoms, your daughter has a brain tumor”. Those were the numbing words delivered to my wife and I on October 4th, 2004.”
One tends to think these are the words spoken to other people, or in the movies, but after a few weeks of wondering why our daughter was having facial seizures, we were socked with the devastating truth.
An MRI at Children’s Hospital Oakland revealed that our daughter, Camille had a tumor the size of a tennis ball inside her 7 year old brain.
We were introduced to Dr. Peter Sun, the head neurosurgeon at Children’s, who calmly outlined the necessity of removing the tumor immediately and the risks associated with it. There was a high chance of some facial paralysis. There was a decent chance of a full recovery. There was a small chance of the unthinkable.
Camille was on the operating room table within 24 hours. After an 8 ½ hour surgery, Camille awoke with a 100% clean bill of health. Our best hopes had been realized and after a miraculously quick one-week recovery, she was released.
Camille has Neurofibromatosis 2 (NF2). It is a genetic disorder that affects 1 in every 40,000 individuals and it causes tumors, neurofibromas and schwannomas to grow in the brains, ears and spines of those affected. Until a cure is discovered, it is a condition which will require lifetime monitoring, MRIs twice a year, probable deafness and other serious quality of life issues.
In the years since her diagnosis, we have been fundraising for the Children’s Hospital Oakland, Advocure NF2 and the Children’s Tumor Foundation. We have raised over $650,000 towards Neurofibromatosis research. This money has led to the discovery of a couple of drug compounds currently in clinical trials to test their efficacy. Where 10 years ago, NF2 had no options other than surgery, today we are close to a finding a way to stop or slow the tumors from growing.
Camille has had her share of challenges since her initial diagnosis. She has had 2 surgeries on her left ear to remove a growing tumor that has rendered her deaf in that ear. She has had a few other surgeries to remove other tumors as they become problematic. She’s a fighter (and the bravest person I know) and she faces each new situation with a calm and optimistic resolve.
I know it is a matter of years, not decades, before we find a way to stop the tumors from growing. When we can achieve this, Camille and all others afflicted with NF2 can have a normal quality of life. We need to do everything in our power to ensure this “solution” can be found in the next few years before the tumor robs her hearing in her other ear (rendering her totally deaf) or the tumors on her spine start causing mobility problems. I ask you to join us in helping my beautiful little girl live the life she is meant to.
On behalf of my daughter, Camille and my wife, Nicole, I thank you.
President, Varsity Painting
Camille is a student at the University of Utah. She is a world traveler having been all across Europe, most recently while working in a hospital in Italy in May 2018. She volunteers in child care centers and the hospital in Salt Lake City where she is a “baby snuggler”. She is planning on a career as a Child Life therapist to work with children as they face difficult challenges medically.