Proton Mom Dot Com is Born!

I was so fortunate to be able to serve as the moderator of the Pediatric Proton Panel on Tuesday, February 12th at the National Association for Proton Therapy's first annual conference in Washington, D.C. Thank you Len Artz for inviting me to be a moderator at your very first conference! My pediatric panel was outstanding and included:

Dr. Daniel Indelicato, University of Florida Proton Therapy Institute
Dr. Anita Mahajan, M.D. Anderson Cancer Center Proton Center
Dr. Andrew Chang, Hampton University Proton Therapy Institute
Dr. Kevin McMullen, Indiana University Health Proton Therapy Center

I can't even begin to describe the variety of information we discussed in our hour long session and as soon as the video is ready I will post it here.  There was a lot of great information shared among our professionals and again as I said in the beginning, "a dream come true for this Mom."  

From all this a new name has emerged, Proton Mom, and that is after another inspiring encounter with Proton Bob.  Bob was at the conference also and his group recently completed a comprehensive survey from prostate patients who had undergone proton therapy for their treatment.  Over 99% stated they would recommend it to others.

 

I met Mike Hyman, Kids-N-Cancer, from the U.K. in person for the first time - we have had conversations on the phone, but not the same. I love Mike for he is dedicated, heart and soul, to helping the children of the U.K. financially when they come to the U.S. for proton therapy. His dedication was palpable.  I was inspired that his sentiments were basically that a parent should never have to bury a child as long as friends and neighbors were willing to pitch in and save a life. We both vowed we could work together in the future.

To my cousin Chuck, who passed away unexpectedly last week - peace and love.

Neuropsychological Testing and Pediatric Proton Therapy

I am a lucky person in serving in my role as the Executive Director of the Pediatric Proton Foundation because I get to interact with health care professionals and convey to you what’s on their minds.  Recently, I visited Philadelphia and Indiana and sat with the Neuropsychological teams at both centers.  Here is what I learned that you need to know:

1.  If your child has been diagnosed with cancer and is well enough, you should get a complete neuropsychological test to establish a baseline as soon as possible.  Neuropsychological testing involves giving a child a number of tests that provide information about how the brain works in the areas of memory, speed, language, visual processing, auditory processing, integration of information, emotional and behavioral regulation, and planning and organization.  The tests are age appropriate. These tests are administered by a trained professional usually a licensed psychologist and should be done by your doctor, not your school.

2.  The typical neuropsychological problems exhibited by childhood-cancer survivors involve processing speed, memory, working memory, organizational skills, time management skills, math skills, and social skills. These deficits have clear implications for success in the educational environment.

3.  All cancer treatments including chemotherapy and proton therapy can cause late effects to include cognitive deficits.  This is still a very new area in terms of understanding what specific chemo drugs cause problems because most chemo protocols are a mixture of various drugs.  However, it is well-documented regarding the late effects of radiation to the brain and spinal cord and other organs.

4.  Knowing the late effects will not probably not change the protocol that you need to follow for your child; however, testing helps establish what effects may be associated with cancer treatment as compared to other normal causes.

5.  Many late effects take years to really show in academics because earlier studies are easier to process as compared to more difficult tasks later in middle school and high school.

6.  Recommendations from the neuropsychological examination may include specific professional interventions that can be incorporated into a child’s Individualized Education Program (IEP).

7.  All the professionals I met with recommended annual testing.  Many insurers will only pay for it every three years.  Read your healthcare handbook and know your rights.

Pediatric Proton Responds to New York Times Opinionator Article

There was an article published in the New York Times yesterday.  You can read it here:

http://opinionator.blogs.nytimes.com/2012/01/02/it-costs-more-but-is-it-worth-more/

The Pediatric Proton Foundation responded as follows:

As the mother of a child that survived paralyzing spinal cancer at the age of 2 in part due to proton therapy, I feel compelled to respond to this article. As you indicate in your article, there is mounting evidence that protons will become the standard of care for cancer treatment for pediatric patients, especially when it comes to brain and spinal tumors. The problem for most parents is accessing proton therapy for their cancer-stricken child. With only 9 centers in the U.S., it often involves a temporary move for the family during the proton treatment which is often cost prohibitive (we traveled over 1,500 miles.)  Sadly, only 465 children received proton therapy in the U.S. in 2010, and as you indicate over 3,500 could have benefited. To solve this problem, we need to have more access for our children through more proton centers. I congratulate Mayo for making this important investment on behalf of all pediatric cancer patients, and I thank you on behalf of my son, now age 6, NED and healthy.

Meet Executive Director, Susan Ralston, Pediatric Proton Foundation

Pediatric Proton Foundation Active in Advocacy

The Pediatric Proton Foundation has been busy on Capital Hill. On May 9th, Executive Director, Susan Ralston, participated in a "Proton Therapy Briefing" with key legislators from both the Senate and Congress in Washington, D.C. Susan's role was telling her son's story and detailing the obstables parents face trying to have proton therapy covered through their insurance. Some of the highlights include:

*Denial is common for advanced treament usually due to "experimental/investigative/unproven treatment" The Pediatric Proton Foundation does not support traditional clinical trials in the case for protons as it relates to appropriate pediatric cases. Most pediatric radiation oncology experts agree that protons have a far superior treatment plan for children since protons have no exit dose, and less radiation is needed to get to the targeted tumor. No one needs extra radiation, but certainly not growing and still developing children!

* Appeals can take up to 180 business days, yet most pediatric protocols call for radiation in the early phase of the overall treatment plan.

*Insurers threaten,"if you decide to receive this service, you can be financially responsible for the total cost." A parent's inability to pay for medical treatment for their child is a top reason cited for financial bankruptcy in American cancer families.
_______________________

The Pediatric Proton Foundation is currently working on a first on a kind effort with the National Association for Proton Therapy to collect data from the Proton centers to help transparently report on the "The State of Pediatric Proton in 2010." We are excited to provide this collaberative effort and know this data will go far in helping more kids get to protons in the future. We almost have 100% participation from all the centers once again proving that when it comes to the kids, we all have heart. Thank you proton centers!

Editorial: Hope in Hampton - dailypress.com

Editorial: Hope in Hampton - dailypress.com

Thank you Hampton University for the opportunity to tell our story and advocate for pediatric proton therapy. Wow, it seems we made a difference! Thanks to Carol too for writing this editorial.

National Association for Proton Therapy Spotlights Pediatrics

National Association for Proton Therapy Spotlights Pediatrics

New Year - New Proton Centers

It was announced this week that Oklahoma City Proton has begun to treat pediatric cancer patients! This is great and offers families in the midwest an attractive alternative. This center has some unique features with pediatric couches that are used. In speaking with a pediatric radiation oncologist this week there, I was informed the paraspinal pediatric patients have now been successfully treated in the prone position where the body is treated lying face down. It is opposed to the supine position which is face up. The good news is that the prone position provides better airways for the anethesia doctors during sedation with younger children.

Numbers are staring to get updated from the various proton centers around the world.
See:

http://ptcog.web.psi.ch/ptcentres.html

As of right now in the U.S. we have the following reported:

Loma Linda founded 1990 treated 13,500 as of 12/08
Florida PTI founded 2006 treated 1,847 as of 12/09
MRPI founded 2004 treated 632 as of 12/08
MGH Boston founded 2001 treated 3,515 as of 10/08
MDA Houston founded 2006 treated 1,700 as of 12/09

I keep hoping these centers will report pediatric cases treated. Right now it seems to be everyone's best kept secret.

There will be lots happening in the proton world this year, we have Hampton coming up by August 2010. Philadelphia is getting itself off the ground. ProCure has several irons in the fire with new proton centers. It looks like Chicago will be there next center opening at the first of next year. Stay tuned!

Retrospect on the Pediatric Proton Foundation's First Year!

Dear Readers,

I would like to wish everyone that follows this blog a very Merry Christmas! We have been blessed this year with Jacob's continuing good scans and stability regarding his back issues. We have also been successful in gaining our public charity status and followed with a news release debut viewed by over 75,000 people.

Indeed, the Pediatric Proton Foundation has made great strides this year. We were at two national conferences. We have made many important connections in the pediatric oncology world. We have also posted opinions when proton articles have run and been featured on t.v. and radio. Our most recent airing on www.whatmatters.tv. Check us out!

Our board of directors represent some of the best talent in the pediatric radiation oncology world and will be key players in grant decision making. Thank you so much to Dr. Keole, Dr. Keppel, Dr. Porsche, Dr. Indelicato and Dr. Chang! You are truly the best!

Not bad for a first year of operation, but we still need your help! We are seeking skilled volunteers and always financial supporters that believe in what we are trying to do to help other parents and their kids. We have been there done that and support is critical to our success.

Our 2010 goal is to continue to raise money to offer financial grants to pediatric cancer patients to receive proton therapy. If you feel it in your heart and have a charitable giving plan, won't you please consider the Pediatric Proton Foundation? You can donate online at www.pediatricprotonfoundation.org.

Again, Happy Holidays!

Susan Ralston
Executive Director/Founder
Pediatric Proton Foundation