Proton - Because the Smallest Things Matter Most

Pediatric Proton Responds to New York Times Opinionator Article

2012-01-04T09:27:00.000-05:00

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 spinalcancer at the age of 2 in part due to proton therapy, I feel compelled torespond to this article. As you indicate in your article, there is mountingevidence that protons will become the standard of care for cancer treatment forpediatric patients, especially when it comes to brain and spinal tumors. Theproblem for most parents is accessing proton therapy for their cancer-strickenchild. With only 9 centers in the U.S., it often involves a temporary move forthe family during the proton treatment which is often cost prohibitive (wetraveled over 1,500 miles.) Sadly, only 465 children received protontherapy in the U.S. in 2010, and as you indicate over 3,500 could havebenefited. To solve this problem, we need to have more access for our childrenthrough more proton centers. I congratulate Mayo for making this importantinvestment on behalf of all pediatric cancer patients, and I thank you onbehalf of my son, now age 6, NED and healthy.

Pediatric Proton Foundation Supports ASTRO's Annual Meeting

2011-10-11T18:22:00.000-04:00

The Pediatric Proton Foundation (PPF) was in full force at the Annual Meeting of ASTRO in Miami Beach, from Oct. 1-5, 2011. Volunteers, Susan Ralston, Executive Director, and Ann-Marie Lewis visited from the headquarters area in Virginia Beach and participated in numerous key meetings with old friends and many new friends. Susan Ralston states, "the proton community is a small world, indeed, and there are so many great people involved in the science and application, it is inspiring to see collaberation and fellowship in action." The Pediatric Proton Foundation recently partnered with the National Association for Proton Therapy to release survey results from pediatric patients treated with protons in 2010. The study is available here.

The Annual Meeting of the PPF was held at the Miami Beach Convention Center on Oct. 3, 2011 in attendance included founders, Dr. Sameer Keole, ProCure - Oklahoma City and Dr. Cynthia Keppel, Hampton University Proton Therapy Center. Other top notch professional volunteers include proton therapy consultant Dr. Andrew Chang and Dr. Daniel Indelicato of the University of Florida Proton Therapy Center. Dr. Vivian Porche, from MD Anderson, was unable to attend this year. New applicants for the board were considered (stay tuned) and other important topics were discussed to include the 2011 Pediatric Proton Therapy Survey.

Many thanks to the supporters of our foundation. We are reminded daily about those special children and their parents who are fighting cancer today and every day. Our mission is clear - we want to see every child that qualifies for proton therapy to get it because it reduces the radiation long term effects to healthy surrounding organs and tissues. We support more proton centers to be able to serve the need. We support proton therapy as the standard of care for appropriate cases of pediatric radiation cancer treatment.

Pediatric Proton Foundation to Hold Annual Meeting at ASTRO

2011-09-30T21:19:00.000-04:00

The Annual Meeting of the Pediatric Proton Foundation will be held at ASTRO in South Miami Beach the first week of October. Wow! As we look back on the year, we have so many accomplishments to be proud of given our limited size. For the first time we published a survey in conjunction with the National Association for Proton Therapy entitled, "Pediatric Proton Therapy in the United States: Patterns of Care 2010." We were impressed with the findings which revealed 45 diseases were treated in 2010. Children under 8 being the majority of those pediatrics treated. We will be reporting these and other findings during our meetings and fellowship during ASTRO. Stay tuned!

Thank you for your continued interest in pediatric proton.

National Association for Proton Therapy and Pediatric Proton Foundation Release First Snapshot of Treatment Data on Children at U.S. Proton Centers

2011-09-18T08:01:00.000-04:00

National Association for Proton Therapy and Pediatric Proton Foundation Release First Snapshot of Treatment Data on Children at U.S. Proton Centers

Pediatric Proton Featured in Electronic Sarcoma Newsletter in August!

2011-08-15T12:06:00.000-04:00

The Pediatric Proton Foundation is featured in this month's Electronic Sarcoma Update Newsletter (ESUN). Since my son is a Ewing's Sarcoma survivor, the work of the Liddy Shriver Sarcoma Foundation has been of extreme interest to me since Day 1 of diagnosis. Click here to read the article: http://sarcomahelp.org/newsletter/community.html

ESUN is an online, open access, peer-reviewed, bi-monthly newsletter. In addition to feature articles that focus on specific sarcomas and current research and clinical issues dealing with these cancers, it has regular columns that abstract newly announced clinical trials and recent research findings). It also contains a column telling stories of courage and hope, a column that deals with a potpourri of topics of general interest, and updates on sarcoma advocacy and related groups. Our readership consists of physicians (oncologists and non-oncologists), nurses, patients, caregivers and survivors. ESUN contents are accessed over 30,000 times each month, giving wide visibility to the published articles. Additionally, a number of articles in ESUN have been translated by sarcoma physicians and researchers and appear in Chinese, French, Italian, Polish and Spanish to benefit the sarcoma communities within the respective countries.

Thank you Bruce Shriver for your dedicated and excellent work in the Sarcoma community. Thank you for this opportunity to discuss the Pediatric Proton Foundation!

Breaking News...State of Pediatric Proton Therapy 2010 Soon to be Released!

2011-08-08T11:58:00.000-04:00

BREAKING NEWS - August 8th

The survey of the State of Pediatric Proton Therapy 2010 is about to be completed. We had 100% participation!

The survey is currently undergoing peer review and will be presented by Dr. Daniel Indelicato of the University of Florida Proton Therapy Institute (volunteer for the Pediatric Proton Foundation) during the Fall Meeting of the Children's Oncology Group (COG) in Atlanta September 13 - 16, 2011.

The National Association for Proton Therapy (NAPT) and the Pediatric Proton Foundation will issue a joint press release immediately after Dr. Indelicato presents the survey results at COG. Highlights from the survey will include the total number of pediatric cases, the various types of diseases treated, and the age groups treated.

Thank you for your continued support for this initial and important proton community effort. We look forward to your feedback.

Meet Executive Director, Susan Ralston, Pediatric Proton Foundation

2011-07-31T17:59:00.001-04:00

Pediatric Proton Foundation Supports St. Jude Children's Proton Initiative

2011-07-05T14:47:00.001-04:00

The Pediatric Proton Foundation was proud to be recently asked to provide a letter of support for St. Jude Children's Cancer Hospital as it makes a bid to build its own proton center. As many followers will know, St. Jude's announced an alliance with Univeristy of Florida Proton Center in the fall of 2009 to begin sending children suffering from brain tumors for proton treatment to Florida.

Before beginning construction, St. Jude Children's is required to obtain a certificate of need from the Tennessee Health Services and Development Agency. This is where the Pediatric Proton Foundation came in to help by providing a letter of support. The hearing for this project is scheduled to occur in late August. If the project is approved, construction is expected to begin in spring 2012 and will hopefully begin treating pediatric patients by 2016.

In the Pediatric Proton's letter, emphasis was of course placed on children receiving protons.

"In a recent study conducted by the Pediatric Proton Foundation and the National Association for Proton Therapy, it was determined in 2010, less than 500 children received proton therapy treatment in the U.S. It is estimated that annually over 3,000 newly diagnosed pediatric cancer patients could potentially benefit from protons. St. Jude’s new proton center can help fill the need. By St. Jude’s adopting proton therapy it will help protons to become more widely known and accepted in pediatric cancer treatment."

We wish St. Jude's the best.

Pediatric Proton Foundation Active in Advocacy

2011-05-18T14:08:00.001-04:00

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!

Congratulations to Dr. Keppel from the Pediatric Proton Foundation

2011-01-31T19:58:00.000-05:00

The Pediatric Proton Foundation would like to congratulate Dr. Cynthia Keppel on her selection as the 2011 Virginia Outstanding Scientist! Dr. Keppel serves as a board member with our foundation, and she makes us proud!

Read more here: http://www.hamptonu.edu/news/012611_40_keppel.html

Editorial: Hope in Hampton - dailypress.com

2010-10-24T07:52:00.000-04:00

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

2010-09-26T11:43:00.000-04:00

National Association for Proton Therapy Spotlights Pediatrics

Seoul, Korea - A Viable Option for Pediatric Proton Patients

2010-07-16T19:48:00.000-04:00

Seoul, Korea - A Viable Option for Pediatric Proton Patients

There is a HUGE Unmet Need for Pediatric Proton Treatment

2010-06-24T19:24:00.000-04:00

I was more than shocked to learn only 384 pediatric patients received proton treatment in 2009. WOW! Not a happy wow, but a sad wow. The number should be more like 3,000!!! Okay, Pediatric Proton Foundation you have your work cut out for you!

Consider the following comments from our board member Dr. Sameer Keole, Radiation Oncologist with ProCure's Oklahoma Proton Center.

"Our estimates are that ~3,000 children a year in the US would benefit from proton therapy. Best estimates are that, in 2009, 380 children received proton therapy in the United States. (Many of these patients are from abroad) With the addition of both our center and PENN now adding pediatric capacity, hopefully this number will climb to 500 in 2010. Still, more than 80% of children who would benefit from protons will not be able to receive this therapy."

There are many reasons that the number of pediatric patients numbers are limited. My main focus today is the number of centers. We need more. Each center has only so much capacity to treat children, and in previous blog I had estimated the number of kids treated based Boston's percentage of total pediatric patients treated at 1,000. I was wrong because I assumed everyone treated a similar percentage of peds. Boston actually treats the most percentage of peds and perhaps I should have used an average. Now I know the actual numbers by center, and some centers obviously have no focus on treating pediatrics. I know the kids don't turn the profit a prostate cancer patient does, but where is the morality of healthcare these days? Why aren't our children a priority for all centers? Why do all centers have a child squarely pictured on their brochures and their web if they have no focus on pediatrics? There is much to answer here for future blogs and I digress.

It was GREAT news then that plans for two new centers were announced over the past month. One in Knoxville, TN and the other in San Diego, CA.

1. A planned Knoxville cancer treatment center is set to become the first place in the state to offer proton therapy. The state's Health Services and Development Agency approved an application last week from Knoxville-based ProVision Trust to build a $118.8 million center and fill it with proton therapy cancer treatment equipment. ProVision has lined up support from the University of Tennessee Medical Center.

2. Scripps Health announced Tuesday that it will manage a $185 million proton center to be built in northern San Diego by Advanced Particle Therapy, a private health care company based in Minden, Nev. Construction is expected to start in July on a 7-acre site in San Diego's Carroll Canyon business district near Mira Mesa. The 102,000-square-foot facility is to include five treatment rooms, three with special gantries that allow a proton beam to be delivered to a patient at almost any angle. Officials said the project is expected to be finished in 2013.

My hope is that the new centers and the current centers will focus on the positive impact they can have on the pediatric cancer cases. We want all the centers to make it their priority to treat pediatrics, and report their numbers, not just show the kid's pictures on their web and brochures. Our kids our counting on us. Our kids need the voice of the Pediatric Proton Foundation to make their case to those that can change these statistics. Please visit and support us at http://www.pediatricprotonfoundation.org/.

Dr. Torunn Yock Presents Promising Use of Protons for Pediatric Medulloblastoma

2010-06-07T14:44:00.001-04:00

Radiation therapy is integral in treatment of pediatric brain tumors. However, conventional photon radiation is associated with long-term neurocognitive effects, including decrements in IQ and difficulties with attention, processing speed, and other executive skills. Proton radiation provides better targeting of tumors than conventional photon radiation, sparing surrounding healthy tissue. It is expected that radiation-related neurocognitive impairments would be lower after proton radiation relative to reports of photon radiation.

The study presented at ASCO examined long-term neurocognitive outcomes of 56 patients with brain tumors treated with proton radiation at MGH. “Late effects of radiotherapy can be disabling and affect health, as well as hearing, neurocognitive functioning and psychosocial functioning,” said Torunn I. Yock, MD, director of pediatric radiation oncology at MassGeneral Hospital for Children. “Proton radiation radiates less normal tissue, which should result in fewer late side effects of treatment.”

Conclusions: At 2-year follow-up after proton radiation, neurocognitive performances were stable, with no significant change seen in most areas assessed. Overall, results compare favorably to reports from photon radiation treatment.

In addition, about 30% of patients had hormone deficits, but that compares with 50% to 70% of patients treated with photons.

Finally, although there was a statistically significant hearing loss found at 1 year at frequencies of 3,000 Hz and higher, these rates are still improved compared with the use of intensity–modulated radiation therapy and photon therapy reported in the literature, according to Yock.

For more information:

Yock TI. #CRA9507. Presented at: the 2010 ASCO Annual Meeting; June 4-8; Chicago.

Yippee - Pediatric Proton Featured on CBS News!

2010-05-28T16:13:00.000-04:00

Yippee! A major television station finally featured a show on pediatric proton versus proton for prostate cancer. If you missed it, watch it online here:

URL: http://www.cbsnews.com/stories/2010/05/26/eveningnews/main6522037.shtml

This in itself is a major deal for pediatrics because hopefully with over 6 million viewers some parent out there that needed to know about proton for their child, found out about proton and is now asking the oncologist if proton is appropriate.

However, I was disappointed in several points that I make in my comments here:

Dr. Gupta,

I was looking forward to this story so much since I am a dedicated advocate for pediatric proton. My own son, Jacob, was diagnosed with spinal Ewing's sarcoma at the age of 2 in 2007. He was treated at MD Anderson's Proton Center in Houston, Texas. They have treated over 300 children in their pediatric program so far. Also, Boston has treated the most pediatric patients of any center and their research with protons is helping develop more advanced protocols for many rare pediatric cancers.

What a shame that your story left parents with the impression the only choice they may have for treatment is Philadelphia, when in fact all seven proton centers treat pediatrics. When parents are considering treatment for their child, often location makes a big difference in terms of travel and residency costs and also family/friend support. Please consider doing another story that would fully explore pediatric proton. So many cancer stricken kids lives are depending on accurate information.

The other thing that upset me as a mother is the impression that was left with the viewers that this treatment is "new." It is not a new treatment. It is simply becoming more available because of new centers opening such as Philadelphia. Hampton is due to open in August and also will have a pediatric program. Please consider adding my non-profit's website to your story links so that parents that are interested can obtain all the information they may need to get to proton treatment for their child. www.pediatricprotonfoundation.org.

Thank you for your consideration. And a sincere Thank you for highlighting proton treatment for pediatrics.

Hugs and prayers to the Keegan family.

Susan Ralston
Executive Director
Pediatric Proton Foundation

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

2010-03-29T19:33:00.000-04:00

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)

New Year - New Proton Centers

2010-01-30T15:03:00.000-05:00

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!

2009-12-19T17:35:00.000-05:00

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

Little Jacob Big Hit in Windy City

2009-11-09T17:15:00.000-05:00

We just got back from our first time exhibiting at ASTRO in Chicago last week. The number of attendees were almost 11,000 people from all over the world. Jacob and I spoke a few times at the IBA booth and then later at the IBA proton symposium. Hopefully, we helped put a face on the pediatric cancer issue and the advantages of proton treatment for pediatrics. Jacob said our motto very clearly each time, "Proton: because the smallest things matter most." Jacob sang his Hippo song and received a round of applause. He later gave an encore of "take me out to the ballgame" in honor of Harry Karry and the Chicago Cubs. More applause. A star is born!

The Pediatric Proton Foundation had its 1st Annual Meeting while in Chicago. The Board of Directors had a lively discussion on how we can make the most and best impact with the foundation. We especially believe we need to target pediatric oncologists. Several other great ideas were developed that will help grow the foundation. I am thankful to have such a professional and dedicated board.

You will notice a new gadget on our blog, called GoodSearch and GoodShop. This search engine is powered by Yahoo. If you load this toolbar, then each time you do a search on the internet, the foundation will earn a cent. If you shop through GoodShop, each vendor offers various donations based on your total purchase. This is a great way to give without ever writing a check. Just do your normal searches and watch the pennies turn into dollars. Pass the word to your family and friends, we appreciate any and all support!

PPF to hit the Windy City - Chicago Here We Come

2009-10-27T10:34:00.000-04:00

The Pediatric Proton Foundation and 5 volunteers from age 4 to 80 will be attending the annual meeting of ASTRO (American Society of Theraputic Radiation Oncologist) in Chicago starting this Saturday, October 31st through the following Wednesday, November 4th. We are excited to have a chance to interact with the professional radiation oncology community and other vendors and professionals that work with proton therapy.

Our 4-year old son, Jacob, will also be in attendance during exhibit hall hours. He sings, he dances and he is a TWO YEAR Cancer Survivor in part due to the proton therapy he received as part of his protocol to beat Ewing's Sarcoma. Since Jacob's tumor was found on his thoratic spine, it was critical that we found a treatment that wouldn't harm his other growing organs and bones. We can't wait for others to meet him and see how grateful we are for having our son here and enjoying his life to the fullest.

We will also have our first annual meeting of the PPF while in Chicago. It will be the first time our board members will meet face to face so we are excited for the event.

Check out our newly revised website. We have enhanced it to include bigger buttons and easier navigation. Our website is www.pediatricprotonfoundation.org.

Senator Kennedy and Proton Treatment

2009-09-04T18:40:00.000-04:00

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

2009-08-31T08:49:00.000-04:00

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.

September is Childhood Cancer Awareness Month - Time to Demand Protons!

2009-08-31T08:40:00.000-04:00

September is childhood cancer awareness month and I found this video that captures the emotion of being a Mom with a cancer child.

www.youtube.com/watch?v=TEg1a8plJq4

Procure's Oklahoma City Proton Center Open for Business

2009-07-12T10:07:00.001-04:00

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!

Pro Proton!

2009-06-28T17:22:00.000-04:00

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!

2009-06-22T20:53:00.000-04:00

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

2009-06-06T15:56:00.000-04:00

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.

Website Growth and More!

2009-05-30T11:54:00.000-04:00

You will notice we have a new look. I found out the "beam of hope" was used by the NAPT and Loma Linda and many, many others and I really want to develop our own identity so we will now use our motto, "proton - because the smallest things matter most."

This has been an active week for the foundation. We have been contacted by two new proton centers one in Oklahoma that will be opening their fixed beam gantry room this July, and also Procure's Chicago center. We are in the process of redesigning some of our materials and plan to do a mass mailing to all the centers which will include our materials and also heart shaped cookies just to make sure the word gets out about our foundation.

I also had a chance to talk with Len Artz the head of the National Association for Proton Therapy and it turns out he has family here in Virginia Beach so we plan to meet face to face in a few weeks when he is visiting. Len explained to me what his organization does and it really is the voice of proton therapy as each center is a member of his organization. He is a wealth of knowledge regarding the history of each center, the business model and insurance issues.

We also started some search engine optimization strategies and the foundation's website has experienced increased activity each and every day since its launch the beginning of May. We have had visits from 17 countries! We also started to receive donations and we are very appreciative. Every dollar will be put right into making the goals of the foundation a reality. Every child that gets proton versus photon may enjoy a lifetime free from radiation damage to healthy tissue that surrounded their cancer site. We stand ready to assist any family trying to navigate through the myriad choices and issues when pursuing proton treatment for their child.

2009-05-30T11:00:00.000-04:00

Test

Let the Blogging about Proton Begin!

2009-05-23T21:38:00.000-04:00

My goal is to update this blog at least once a week. Not that I think I have some “in” to pediatric proton, but like everything else, when you focus you notice. One of the things that jumps out to me, is that proton versus photon in terms of killing cancer is running just about equal in studies published to date. The issue, not discussed often, is the after effects. Radiation at certain levels kills cells. This is the desired outcome: cell death. But when healthy cells surround cancer cells, you have to ask where does the radiation path start and stop? Please take notice of these differences. I spoke recently to a top physicist in regards to proton radiation, and he said, “This type of treatment should be standard of care for all cases of radiation to people in their mid-40’s….why destroy healthy tissue unnecessarily?” I got it. But why is it that this is such an uphill battle? Lack of published studies is one good reason and the cost another. But I digress.

I read a blog recently about the swine flu and the enormous outreach for this problem. Comparing it to children’s cancer, we, the parents of a child cancer patient, can’t understand why there isn’t the same outrage for children’s cancer. It is horrific to watch a child go through cancer treatment. I can honestly say in my life I have never used the word "horrific" until my baby got cancer.

I wanted to end this post by pointing out all the new centers that are coming up over the next 3 years. We go from 5 proton centers now to 11 centers by 2012 see: http://www.pediatricprotonfoundation.org/proton_treatment/u.s._proton_centers/
Lots of people obviously believe in it, and are willing to put their money where their mouth is. Thank you! And now I will follow and post about the dedication each will have to pediatrics. I know Philadelphia is making a dedicated room just for pediatrics, and Oklahoma is pushing to start pediatrics as soon as January 2010! Wahoo!

Stay tuned! Check us out @ www.pediatricprotonfoundation.org. We have loaded some new success stories of children that made it to proton. Check them out at http://www.pediatricprotonfoundation.org/proton_treatment/children_success_stories/

Thanks for following us!

Pediatric Proton Foundation Officially Launches!

2009-05-17T13:53:00.000-04:00

Yes, we are a few months later than we planned, but we are here. I am posting a copy of our first press release here.

VIRGINIA BEACH, VA. In 2007, Susan and Jim Ralston received the news every parent dreads: their 2-year-old son was diagnosed with spinal Ewing's sarcoma, a rare and aggressive cancer. This heart-breaking report was followed by a discovery from relatives that offered some comfort and hope: a relatively new radiation treatment, proton beam therapy. The Ralstons began a quest for more information and learned proton therapy could help their son improve his odds of beating cancer.

As a result of this first-hand experience and months of research, the Ralstons are launching the Pediatric Proton Foundation. Their mission in founding the Pediatric Proton Foundation is a simple one: to provide education, advocacy, and assistance to families in need of pediatric proton. Said founder Susan Ralston, “I am proud that we will be able to help other families and their children with cancer gain access to proton treatment across the country.” The first phase of the Foundation’s rollout plan includes a parent-friendly website loaded with everything a parent needs to help determine if proton is an appropriate treatment for their child and then how to quickly get to it. The next phase involves working to raise money to help researchers with pediatric proton studies and also to help families with the huge financial burden that comes with traveling to get proton beam treatment.

There are currently 5 proton centers operating in the United States with 5 others in some stage of development. Hampton University, near Virginia Beach, Virginia is developing a proton center expected to open in August 2010. “Proton beam treatment delivers targeted radiation to the cancerous site and avoids surrounding healthy tissue. This is critically important when treating children with cancer, since they are growing and many tissues are still developing” said Ralston. There are an estimated 13,000 children diagnosed annually in the United States with cancer and half of those cases are some type of bone, soft tissue or organ cancer, which means many of these cases could potentially be treated with proton therapy. “Dealing with cancer is one nightmare, and then dealing with the after effects of the actual cancer treatment is yet another nightmare. Anything we can do to improve cancer survival rates and reduce the after effects from the treatment needs to be pursued. These are America’s children – they deserve the best we have to offer here,” continued Ralston.

In mid-April, the Foundation was a first-time exhibitor at the “Pediatric Neuro-oncology in the Proton Era” meeting that was sponsored by Massachusetts General Hospital - the site with the world's greatest cumulative experience with pediatric proton neuro-oncology. The Foundation will be an exhibitor at the 51st Annual ASTRO (American Society for Radiation Oncology) meeting at McCormick Place West in Chicago November 1-5, 2009 with over 12,000 attendees expected from all over the world. “We hope that through our active involvement in the pediatric oncology world, we can bring more attention to this treatment option for children and therefore, more supporters to our cause of helping appropriate pediatric cancer cases access proton therapy,” said Ralston.

About the Foundation:

The Pediatric Proton Foundation is uniquely positioned as an independent, nonprofit charity that relies on voluntary funding from a variety of sources to be able to provide the most objective information available about pediatric cancer treatment at each proton center in the U.S. The dollars given are used to help support our mission of providing education, advocacy and assistance to families in need of pediatric proton. We are a non-profit 501(c)(3) charitable organization. You may be able to deduct some or the entire amount of your donation for tax purposes. Please consult your professional tax advisor.

For more information, visit the Pediatric Proton Foundation’s website at: www.pediatricprotonfoundation.org.

Foundation website coming soon

2009-01-11T09:17:00.000-05:00

After months of laying the groundwork, the Pediatric Proton Foundation was formally approved as a corporation on December 30, 2008. There is still much work to do to get the website ready for launch. We are planning to launch the site in February. The website name will be www.pediatricprotonfoundation.org. Check back soon for the latest!