Pro Proton!

When I was writing the press release announcing the pediatric proton foundation, one thing I tried to explain was the finding out about proton treatment gave us hope at a time that we desperately needed it. I don’t know how to describe finding out my son had cancer. At first, I was in denial though I knew the doctors didn’t have time to wait for me to get to acceptance. Everything from the moment we heard tumor went like lightening. You see my son was paralyzed. There was cancer and there was a tumor pressing on his spinal cord. We agreed to do emergency surgery. In this time and shortly after my son’s initial diagnosis, my father-in-law suggested we look at proton. He called Boston and Jacksonville and both places supported Jacob being considered as a patient. I believe my father-in-law being a chemical engineer understood the terrible toxicity of chemo drugs and the harm it would do to my son’s young body. We heard from the doctor’s themselves that there are no new chemo drugs and the ones that would be used on Jacob were 30 to 40 years old. They cause temporary and permanent damage to the healthy tissues along with the cancer tissue. The only changes that have been made to protocols are how much gets used in what combination and how often. That’s it.

I remember being angry that this was all the choice we had. I began searching online every waking hour in regards to ewing’s sarcoma, the drugs Jacob would be on, the protocol, the clinical trials. Many hours and hours. Slowly, I began to include proton treatment in my research once I understood radiation is part of the cure. My sister-in-law, a nurse, also supplied us with information on proton. Suddenly, I thought my son CAN beat this thing. Doom and gloom turned to hope. He had to be given the best chance of killing the cancer and still leading a normal life. We knew the chemo was bad, but did the radiation phase have to be archaic too? Did we have to watch our son’s back be zapped by 40 year old radiation machines and destroy his little infrastructure? NO, we didn’t.

We fought hard and worked day and night and got our son accepted to MD Anderson’s proton therapy center. This is why we are here today as the Pediatric Proton Foundation. We believe every child deserves to have proton as their radiation therapy when fighting cancer. These children fighting cancer already have the cards stacked against them in so many ways. I understand why proton is often called the “beam of hope”. When life seems bleak and your child faces a possible death sentence, proton is just the bright spot of hope you need, for survival of cancer and survival of the late effects of the treatment itself.

We are “Pro Proton!”

Proton for Pediatric Cancer Tumors - Pass it on!

It’s remarkable that so few people know about protons. I frequently bring up this subject when I am talking about my son’s recovery from ewing’s sarcoma cancer and most people say, “what is proton?” I start with an easy, “a targeted form of radiation, more bullet-like and precise than traditional radiation.” I go on to explain my son was only 2 when he was diagnosed and had a lot of growing parts that we didn’t particularly want touched with radiation like his heart and his lungs. Most people get that. Targeted sounds good, but why radiation at all?

Most people don’t understand that over half of people diagnosed with cancer will be prescribed radiation as part of their protocol to get better and that includes children. Chemotherapy is not a targeted or precise method in destroying cancer, in that you have to destroy many good cells when going after the bad cancer cells. This is the reason fast growing healthy cells such as hair, and mouth cells die along with the bad. Same holds true with radiation, in that a beam is directed at the cancer tumor site and the radiation hopefully destroys the cancerous cells and the cells surrounding the tumor bed. We want to destroy the bad cells without destroying the good and healthy ones beyond the cancerous tumor bed. Proton accomplished this because of the Bragg peak. The Bragg peak describes how the energy enters the body and deposits the radiation in the tumor target but not much beyond. It really is that simple. Proton works better because of the Bragg peak.

Proton gets given to pediatric cases because family and friends educate themselves and pass it onto loved ones, friends, and those fighting the beast that is taking our children with it. PROTON FOR PEDIATRIC CANCER - PASS IT ON!

New Centers in 2009

Soon we will have 7 proton centers operating in the U.S.! The more the merrier if you ask me.

Procure's Oklahoma City Proton Center will open July 8, 2009 and is already accepting inquiries and beginning to schedule patients for consultations. This center can be reached by calling 888-847-2640. Some pediatric patients may be able to be treated there depending on if they need anesthesia. You can check out this new center by going to http://www.procure.com/. They have a nice newly designed website with tons of information available.

The other new center will be opening in November 2009 in Philadelphia - the Roberts Proton Therapy Center. This center can be reached by calling 1-800-789-PENN(7366). You can visit this center on the web at http://www.pennhealth.com/. They are planning to have a gantry room dedicated to pediatrics so this makes me very happy.

I was reading some of the very latest information available on protons versus photons, and it is indisputable regarding the superiority of protons in use for children. Children are still developing and having radiation hit healthy tissue can cause devastating effects. Especially when a child has a brain tumor. The brain is very sensitive to radiation. Doses as low as 18 gy can cause developmental delays, hearing problems, loss of iq (this happens every year after radiation for many years to come) and many other terrible problems. I heard a very reknowned radiation oncologist for St. Judes discuss this subject and it made me get goose bumps hearing the devasting effects of radiation to the brain. He touted the scientific evidence as showing protons vastly superior over photons or IMRT especially with brain tumors. I asked him why doesn't St. Judes have proton then? He said I would have to ask the powers that be. I plan too. Many parents flock to St. Judes because they are the only pediatric hospital dedicated to solely to pediatric cancer. Of course, I understand children can be referred to the other centers, but still.

I may be like a caped crusader here. Just an empowered Mom that feels her son's life was saved with protons. I am making it my job to make these facts known. I hope someday to get the attention of the media. My goal is to make sure in my lifetime that all of our cancer kids that need radiation treatment can get to the protons. Having more centers will ensure more slots are available for the children that truly have the most to gain from proton treatment. Join me in this effort - will you? Check out our website: www.pediatricprotonfoundation.org.