Before you read the letter I’ve written below, I’m going to ask you to stop and make yourself aware of the motivation behind the effort.
Honestly, the motivation is two-fold; the first you can already guess, is that sweet 5 year old angel of mine. The second part to my motivation is a man, who on the surface, seems to have little in common with Caitlin, except that both died from a form of this nasty disease called cancer.
I challenge you to take a moment, and see the deep similarities that run between the 2 people that gave me the drive to step out of my comfort zone and make an attempt to turn the tides on DIPG.
Pull up your google, and search Jimmy Valvano: speech 1993 ESPYs.
Some of you know the man, know the speech, know the impact…
Look it up again anyway. Listen to the words he’s got to say. Then, please read the letter I’ve written. Feel free to pass it around and share it…especially if you know anyone who can help to get it read by the executives at ESPN and the V Foundation for Cancer Research that I mailed it to today. (SO MUCH THANKS to those of you already at work!)
as always, with my love and gratitude, d
(and the gratitude of this special girl too)
February 15, 2014
V Foundation for Cancer Research
106 Towerview Court
Cary, NC 27513
Dear Ms. Mazur,
“Don’t give up, don’t ever give up….”
Incredible words spoken by an incredible man.
Our daughter, Caitlin, was only 5 years old when she died in November 2012 after a 10 month battle with Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is an inoperable, untreatable, always fatal brain tumor.
Caitlin used her small voice, fierce courage and absolute trust to try and make a difference in the fight against DIPG and pediatric brain tumors. She embodied the ideals in Jimmy Valvano’s speech at the ESPY’s in 1993. She laughed every day, she was thoughtful every day, and she engaged her emotions every single day. Even though she was just a little girl, so much of Caitlin’s attitude and life and fight against cancer paralleled Jimmy’s.
Caitlin’s tiny presence made an impact among friends and family. Jimmy’s voice was much bigger, his presence bolder. He had a platform from which to project, and a natural ability to get people to take notice and listen. I’m asking to borrow Jimmy’s “voice” and “platform” to help make a difference in pediatric brain tumors the same way he made such a big difference in his own fight against cancer.
There is a silent killer running through America, attacking 250 innocent children every year. This intruder has been prowling our country for the last 40+ years, taking the life of every single child it touches. We know its name. We have an idea how to harness it. However, this thief will not feel the cold metal of handcuffs on its wrists; will not ever see the inside of a jail cell; will never stand before a judge and jury and never defend itself…because this invader is a rare pediatric brain tumor.
The treatment protocol for for DIPG has not changed in 30 years. A 6 week course of radiation temporarily shrinks the tumor, giving the child relief from symptoms and a brief return to normal life. But the tumor always returns, more vicious and aggressive than before, and this time, the outcome is certain death within weeks. Depressing, isn’t it? That is the sum total of treatment available to every child diagnosed with DIPG.
There has to be something more for these children. Our “something more” was a ground breaking clinical trial led by Dr. Mark Souweidane of The Children’s Brain Tumor Project at Weill Cornell Medical College in New York. Caitlin was the very first patient in the clinical trial. She still lost her life, but not before contributing to the research being conducted there for DIPG. There are doctors and scientists working incredibly hard to unlock the secrets to treating pediatric brain tumors, but they are limited every day by lack of financial support. Funding for children’s brain tumors is minuscule in comparison to other cancers.
The National Cancer Institute offers statistics to verify that increases in funding directly correlate to subsequent advances in research and treatment in many diseases, including breast cancer, colon cancer, and childhood leukemia. We have not found a cure for any of these diseases, and all of them deserve further attention and research. But there are other diseases and cancers, less well-known, that desperately need even a fraction of the available research funding. I long for a time when awareness of children’s brain tumors equals the awareness of a disease like childhood leukemia, and receives financial support to match.
I don’t have a foundation, and I don’t represent an organization. But I did have a 5 year old girl who fought a tough battle and lost. I come to you on behalf of the unknowing parents who will have to follow in my footsteps. For those anonymous faces and names, I have a request; allow those parents the gift of hope, to see their child survive and grow and thrive.
ESPN is a huge supporter of the V foundation. Each year around the time of the ESPYs, “ESPN Experiences” are auctioned off to raise large amounts of money for the foundation. What would happen if only ONE of those experiences got auctioned off in support of research for pediatric brain tumors? ESPN and the V Foundation could make a difference. You have the potential to raise massive awareness across America. You can speak louder than a tiny 5 year old who never had a chance to grow up and gain her own loud voice. I respectfully request that you consider the auctioning of one of these experiences to benefit the Children’s Brain Tumor Project at Weill Cornell Medical Center, in honor of Caitlin’s small voice.
I am certain that you receive hundreds of requests for funding, support, and publicity from individuals and organizations for many causes. Please make this the year that you decide to shout from the rooftops and start a fight against pediatric brain tumors.
cc: Mike Greenberg
Weill Cornell Brain and Spine Center
Children’s Brain Tumor Project
Mark M. Souweidane, M.D.
1305 York Avenue
New York, New York