New Therapy for Pedriatric Brain Tumors

By: Clifden Kennedy
Topics: Sneak Preview

Updated with video 7:26pm, 5/26/10

Meet Addison, just two-years-old, she's already a survivor of a pediatric brain tumor.

She's undergoing a promising, yet unproven radiation therapy called Proton Beam Therapy to give her hope at a normal life at the country's first center dedicated to children.

Fighting Pediatric Brain Tumors

Tonight, on the CBS Evening News with Katie Couric, CBS contributor and Neurosurgeon, CNN's Dr. Sanjay Gupta introduces you to this special little girl on an amazing journey.

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by whitneyberg June 6, 2010 10:36 AM EDT: Dr. Gupta, Has this type of therapy been used or thought about for Tuberous Sclerosis Complex? Our 7 year old was born with 15 tubers. 5 of them were resected when he was 2. But, he continues to have seizures due to the tubers. Of course, they are not malignant. But, cause seizures and other cognitive delays. I would love to understand how this treatment may be used for TSC. Thank you!; Reply to this comment


by whitneyberg June 6, 2010 10:33 AM EDT: Dr. Gupta, Has this type of therapy been used or thought about for Tuberous Sclerosis Complex? Our 7 year old was born with 15 tubers. 5 of them were resected when he was 2. But, he continues to have seizures due to the tubers. Of course, they are not malignant. But, cause seizures and other cognitive delays. I would love to understand how this treatment may be used for TSC. Thank you!; Reply to this comment


by Susan_Ralston May 27, 2010 3:30 PM EDT: 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 close to 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.; Reply to this comment

by karenmarch May 26, 2010 11:33 PM EDT

Hello,

Is anyone aware if they are able to treat children with this practice that are only one year old?

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by TheresaMakrush May 27, 2010 10:44 AM EDT: Check with the University of Florida Proton Therapy Institute. floridaproton.org. They have a clinical trial with St. Jude Children's Research Hospital to treat rare brain cancers in children younger than 3 years of age.


by littlecarp June 19, 2010 2:13 PM EDT: Hi,

In May my son, who was 7 months at the time, had the same ependymoma tumor removed from Pitts. Children's. They were able to get 99% of the tumor, to make a long story short, the only thing that will "cure" him is radiation. Because he is not a year old he has to do chemo. treatments until Sept. then we have been accepted to Mass. General hospital in Boston where he will get proton beam therapy. So to answer your question they will do it on your child if they are a year old... and they feel your child will benefit from the treatment.


by KristineF777 May 26, 2010 9:16 PM EDT: My son was treated with proton therapy in 2005 by Dr. Nancy Tarbell, Dr. Torunn Yock, and the amazing team at Massachusetts General Hospital. At age 2, he had a giant perimeningeal rhabdomyosarcoma in his head and pressing against his brain. Thanks to proton therapy, he is a normal first grader now (he would have been completely brain damaged with traditional photons). While they treated adults in Boston, too, they had (and still have)a huge program for children there - very organized to get the kids in in the morning (since most kids can't hold still for the treatment, they are sedated, and can't eat that day till afterward). They had pediatric nurses, social workers dedicated to families of pediatric patients, child life specialists, a toy room, even a cost free massage therapist on Thursdays to help relieve stress for worried parents during the treatment. And the whole thing was completely integrated with the pediatric oncology clinic there and the hospital. At the time, proton therapy was only available in 2 places in the USA - Loma Linda, in California, and Mass General in Boston. All the kids went to Boston because they had this program. I'm thrilled that proton therapy is becoming less of a scarce resource, but I want Mass General and the Northeast Proton Therapy Center to get the credit for being first to make it great for kids and their families. 5 years later, and still I think about how thankful I am for them more than once a day.; Reply to this comment


by survivorsmom May 26, 2010 8:24 PM EDT: While the Children's Hospital of Philadelphia may be the first to have a proton therapy center devoted to children, they are not the first with a proton therapy center. My son was treated over 8 years ago at the Northeast Proton Therapy Center at MassGen in Boston (http://neurosurgery.mgh.harvard.edu/protonbeam/). He was 10 years old at the time. He had been undergone surgery and chemo at CNMC, and was referred to Dr. Nancy Tarbell at Mass Gen for proton treatment. He wasn't the first child to be treated there, either. Prior to the facility at MassGen, protron therapy was delivered at Harvard to both children and adult patients.

We were fortunate as our insurance did cover the costs, even though we are from Maryland. I'm thrilled to hear that a pediatric center has been opened and I know that the Keegan's made an excellent choice for their daughter's treatment. By the way, my son, now 18, will be attending college this fall.; Reply to this comment


by clancylangford May 26, 2010 7:17 PM EDT: The treatment of tumors with proton therapy is no longer experimental. There is sufficient data to prove that it is one of the effective and hunmane treatments available. I had prostate cancer and after proton therapy (proton is an element, not a beam) I was apparently healed. So have many others. Treatment of children is especially a blessing. For a real insight, contact the University of Florida's Shands Proton Therapy Institue in Jacksonville FL. One of five or more facilities using the technology developed at the Loma Linda Medical school in CA.
God bless,
><>clancy<><; Reply to this comment


by Rownew May 26, 2010 7:12 PM EDT: Dr. Gupta,

With respect, can you get the information up to date. We have been sending children to Boston for proton beam therapy since 1988. That's last century; that does not merit being described as *new*.; Reply to this comment