Chuck Beltrami

Information Journal Guestbook

I was diagnosed with clival chordoma in June 1999. I had a major surgery in July of 1999 through the palate (roof of my mouth).

85% of the "baseball-sized" tumor was removed. I then had 37 treatments of proton beam radiation in Boston later that year. For 6 years the small residual tumor showed no increased growth and even seemed to be shrinking with each follow up MRI. Then after 6 years the MRI showed substantial re-growth and action needed to be taken. A craniotomy was performed in 2006 to remove the most tumor possible-given the location of the tumor around vital structures. It recurred and grew the following year and I underwent further surgery. Recurrence again in 2008 and another surgery with a follow up of 5 treatments of Cyberknife radiation.

It has been a long journey of ups and downs, but I have a family that inspires me to keep fighting and that is what keeps me going. My wife won't let me stop as she is always at my side doing whatever it takes to help me. I am so blessed in that regard.

My reason to help with fundraising is pretty simple. Monies are needed to get doctors and specialists in the field to apply their talent at finding a cure for this neglected disease. If motivated enough and even just approached enough, these doctors and specialists can become an integral part in achieving results and a reason to hope that a cure can be found. I believe if enough attention is given, a cure is possible and sooner than later.