Camille's Story

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“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 become involved in fundraising for Children’s Hospital Oakland. We have raised over $50,000 for their new MRI facility in Walnut Creek and are proud to say that if you visit, you will probably spend time in “The Camille Thoms waiting room”. I have also joined the board of Advocure NF2, a charity seeking to find a cure or therapy for NF2. NF2 was virtually undiagnosed 20 years ago and research was limited even 10 years ago but in recent years, there have been significant leaps and bounds in the work being performed by select scientists and doctors throughout the world.


In 2011, the 7th annual Halloween fundraiser raised $100,000 for research for Neurofibromatosis 2. $40,000 of that was sent to Dr Brad Welling of Ohio State University to support the research he is doing with 2 drug compounds (AR42 and AR12) and several natural supplements. We are proud to partner with him. We have had a few meetings and he has stated that “if I could do one thing in my career it would be to lend support to cure this disease.” We also sent $50,000 to support the research being performed by Dr. Marco Giovannini at the House Research Institute in Los Angeles where they are beginning clinical trials in 2012 with a RAD001.

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.

Celebrate Life.

Roland Thoms
President, Varsity Painting

For more information on Advocure NF2, click on www.advocurenf2.org

 

Help Fund Children's Tumor Research or to purchase tickets to the Halloween Bash.

ALL DONATIONS ARE TAX DEDUCTIBLE.
Advocure NF2 Tax Id # (for tax deduction purposes) 26-3060389

CAM
 

Camille update: September 2010

A year later and things do change…

Camille had surgery last year (November 19) to remove the tumor from her right ear. Early indications were successful as the doctor indicated that the tumor had been removed cleanly and completely but blood flow to the nerves rendered her deaf in that ear. It was an emotional Thankgiving that included sadness, anger and helplessness. The good news is that since her cochlear nerve was not damaged, she is a future candidate for a cochlear implant.

Otherwise, the tumors we are monitoring are stable and we are looking into non-surgical options in the future such as drug therapies and/or natural supplements to keep the tumors from growing larger. She is having a great year in 7th grade and enjoying life to the fullest.

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