DON’T DELAY CALLING A PROTON CENTER: PEDIATRIC PROTON SPOTS ARE LIMITED!

If you are considering proton therapy for your child, it is important that you seek admission to one of the proton centers as soon as you determine radiation is part of the protocol or treatment plan for your child’s particular cancer. Each center only has so many patient slots available for pediatric patients so the sooner you start the process, the better chance your needs will line up with an available opening in a nearby center.

Many parents are WAITING for their primary oncologist to make the referral. Please don’t wait for this measure. Doctors are busy and are juggling many cases. YOU must become your child’s advocate and make the call yourself. In a recent study over 85% of pediatric proton cancer patients were self-referred. Any parent can make a self referral to each of the proton centers. Our website here includes a variety of information to help you navigate the process. You will be required to obtain your child’s medical records for review by one of the proton centers for admission. Plan to obtain a complete copy of all medical records as soon as possible and continue to keep them updated throughout and after treatment. Please feel free to contact us at information@pediatricprotonfoundation.org if we can assist you in gaining acceptance to a center.

PATIENT ACCESS:

James Slater M.D Proton Treatment, Loma Linda, California 1-800-PROTONS

Francis H. Burr Proton Center, Boston, Massachusetts 1-617-726-0923

University of Florida Proton Treatment Institute, Jacksonville, Florida 1-877-686-6009

Midwest Proton Radiation Center, Bloomington, Indiana 1-866-ITS-MPRI
(1-866-487-6774)

M.D. Anderson Cancer Center's Proton Center, Houston, Texas 1-866-632-4PTC
(782)

ProCure Proton Therapy Center, Oklahoma City, Oklahoma 1-888-847-2640


Roberts Proton Therapy Center at the University of Pennsylvania Health System
Philadelphia, Pennsylvania 1-800-789-PENN
(7366)

Senator Kennedy and Proton Treatment

Pediatric Proton Foundation Responds to NPR Commentary on Senator Kennedy’s Proton Therapy Treatment (September 1, 2009)

I am miffed that once again proton treatment is in the news and being cast in a negative light along with Senator’s Kennedy’s death. Somehow naysayers have twisted a story saying Senator Kennedy’s proton treatment for his brain cancer was unwarranted and experimental. If you were a legendary Senator and bore the name Kennedy, would you not seek out the best treatment available to try to treat your deadly cancer? Of course you would and that is what the late Senator Kennedy did. Senator Kennedy was known for his compelling stance on healthcare issues. Of course, first he selected one of the top neurosurgeons at Duke then he selected the best radiation treatment available in the U.S.: proton treatment.

The physicians at Harvard are considered top experts in their field and are recognized around the world for their superior cancer programs. His doctor team determined together with their patient, Senator Kennedy, to treat his cancer with protons as they considered it the best medical option they could provide under the Senator's severe circumstances. From what has been reported, Senator Kennedy's tumor was among the most aggressive and fatal types of cancer. For him to have survived 15 months from diagnosis and remain a vibrant participant in his work is actually quite remarkable. Most glioma patients at Senator Kennedy’s age (76) are lucky to live another 6-12 months. There is no doubt that proton therapy achieved the goals of his physicians: minimal side effects during and after treatment and more quality days for him and his family.

The same choice is needed for all cancer patients – not just the affluent and easily recognized. The same choice is needed for all pediatric cancers. Harvard has released many new studies that show the chance for secondary cancer is reduced up to 50% when protons are used on children versus traditional radiation. Children are still growing. They are highly susceptible to deficit late effects from radiation hitting non-tumor healthy tissue especially in the brain. The dose to healthy tissue is minimized with protons. Senator Kennedy knew this information and that’s why he got it. Now let’s help our kids get it too.

Susan Ralston
Executive Director& Founder
Pediatric Proton Foundation
www.pediatricprotonfoundation.org

Protons and Children: September is Childhood Cancer Awareness Month

I was talking to a friend of mine and we were discussing how many children have actually received proton treatment as part of their protocol in the United States. I suggested to her that there were around 1,000 pediatric patients treated here. She said last year? I said no, I mean since it started in 1990!!! You have many, many of the experts saying it is undisputable that protons should be used versus photons with children because of secondary tumors, and because of the deficit effects of radiation on healthy tissues in children. Yet how can it be there have only been 1,000 kids treated in the last twenty years??? This is why I started the Pediatric Proton Foundation.

Here is how I come to my estimate:

It seems it is agreed Boston, by far, treats the most pediatric patients. They published they had treated 320 pediatric cancer patients from a total of 3,515 or 9.1% of patients. Let's assume then the other centers treat approximately half that or 4.5%.

Boston = 320 peds self reported
LL 13,500 = 607 peds
Florida 998 = 44 peds
Indiana 632 = 28 peds
MDA 1000= 45 peds

That equals a grand total of 1044 peds. This has to change. I am going to try to help make it change with your help.

September is childhood cancer awareness month. The following video is a tribute to our young warriors.

Procure's Oklahoma City Proton Center Open for Business

I attended the grand opening of the Oklahoma City Proton Center on July 8th! Dr. John Cameron had a vision of treating patients needing proton in centers outside of academia settings, and his dream came true this day. Procure's first center is most impressive. There are 2 more in some stage of development with Procure including Chicago and Boca Raton.

I noted subtle upgrades throughout the tour starting with a concierge that is postioned in the center to help patients and their families make all their arrangements from lodging to fun. I have visited 3 other centers so I have some frame of reference. It's great seeing everything brand spanking new. Incorporated throughout the center are the latest in positioning robotics, and a slew of very keen upgrades such as an enclosed floor in the rotating gantry room. They also plan to install a pediatric couch in the gantry so children can be positioned more comfortably for their treatment. I also spoke to a physicists that is developing a new application for anesthesia for children that will speed the treatment process up considerably making them the same if not faster than an adult patient to be treated.

What I believe will make OKC work is the new Integris comprehensive center being built a stone through away from the proton center. Patients will be able to walk to the cancer center for routine blood counts, tests, and any other treatment (ex. chemotherapy) that goes along with proton treatment. This in itself may make it more "convenient" that some other center's setups which usually include a ride to get to the nearest cancer center. The fact it will be designated a "comprehensive" cancer care center by the NIH, will make it one of the 25 or so designated centers in the country.

Cheers to Procure, IBA and Integris for what appeared to me to be a job well done!