Valerie Marshall, a mother who's son, Addison, is Devin’s age and going through relapsed leukemia at MD Anderson. She had the opportunity to go to Washington DC a few weeks ago and sit and talk children’s cancer research funding with members of Congress in a one on one setting. She had the idea to put together a notebook with pictures and letters from actual children’s cancer patients and their parents. The current proposed budget includes a 10% reduction in funding for children’s cancer research. This reduction will end up cancelling 20 studies and over 400 patients in clinical trials so Val and the group were there trying to convince Congress to at least maintain the previous levels.
Devin really wants to raise awareness and this letter really puts everything in perspective. At least, it did for me.
To Whom it may Concern:
My name is Devin Duncan and I am an 18 year old senior at Langham Creek High School in Houston Texas. I am also a 2 time cancer survivor. When I was 3 years old I was diagnosed with leukemia (ALL) and underwent 2 ½ years of chemotherapy treatment at Texas Children’s Hospital. Much to my surprise, I was diagnosed with the same form of cancer again 13 years later on February 18, 2010, and shortly after I had turned 17 years old. I am currently in the middle of another, more aggressive 2 ½ year treatment plan and when it is complete I will have undergone chemo treatments for over 25% of my life.
I truly believe that cancer does not by any means squelch the opportunities in a person’s life but instead introduces opportunities we might have never had. For example, I feel like I was given this disease twice for a reason. To spread hope and happiness to others in my same situation, to inspire people to live their lives as if tomorrow wasn’t promised and more importantly, to spread awareness of the hardships children’s cancer patients face day to day.
I have had the opportunity to spread that message at various speaking engagements including the Lombardi award presentation this last year, American Cancer Society events, misc. fundraisers and especially one on one conversations with my friends and other patients in the hospital. If it would help our cause and help raise awareness, I would gladly sit down and speak individually with each and every member of Congress if necessary.
If I had that opportunity I would tell them this…we are not insignificant. Over 12,000 children are diagnosed with cancer every year. Over 3,000 children die of cancer every year…that’s 9 children who lose their battle with cancer every single school day in America. Not insignificant.
I would remind them that over 75% of the drugs given to adult cancer patients today were developed as part of children’s cancer studies. That the adult cancer research community has recently begun a big push to try and work more closely together to make better use of their resources but, out of necessity the children’s cancer community has been doing that for years and perfected it, making for a much more efficient use of funding dollars. But we are not getting the funding.
I would point out that federal pediatric funding for last year was approximately $176 mil while funding to keep Amtrack afloat exceeded 10 times that amount and defense budget spending was over $700 BILLION. That we spent over $150 bil in Iraq and Afghanistan alone, over $435 mil every single day. Almost 2 1/2 times more in one day than we spend on pediatric cancer research in a year. Although they could not find any waste in their departments previously, the DoD recently told the military that if they could find any waste in their departments they could keep that money to be re-allocated back into their pet projects. They quickly found over $100 bil in waste. That’s billion with a B. The Air Force found $34 billion to use on a new bomber. The Army found $29 bil that they are going to use, in one year, towards substance abuse programs. An important program but still probably 10 times more than has been spent on pediatric cancer research funding in its history. And 3,000 children die each year of cancer. Where are our priorities? We are not insignificant.
I would tell them that having cancer changes a child. We are all molded by our experiences. I think that I am the person I am today partly because I survived cancer at such a young age, as are thousands of other children’s cancer survivors. Surviving cancer, enduring the pain and sickness of chemo, watching while our new best friend loses his battle, the uncertainty of what will happen to us and the need for us to grow up more quickly than any child should, all mold who we are. As cancer survivors we sometimes come out of our ordeal with the confidence and the desire to do great things, to help others who are less fortunate than us and to help change the world. And at our young age we usually have many years ahead of us to accomplish that. Yet over 3,000 of what could be some of our best and brightest die every year.
And finally I would tell them this. I would remind them of 9/11. It was a terrible, black day in our country’s history. Picture the thousands of people involved and the fear they must have gone through. The uncertainty of what had happened and what their outcome would be. Their battle to live but in the end, the painful death of many.
Now picture that they were all children.
America was outraged because nearly 3000 people died that day, a significant number. Significant enough that we have spent the last 10 years and 100s of billions of dollars in Afghanistan alone trying to exact revenge on those responsible. Yet the same numbers of children in America suffer and die painful deaths each and every year, year in and year out. In comparison, the money spent to help us is inconsequential, considerably less than 1%. Yet we have no lobby. Our pediatric cancer centers often have to rely largely on private donations. Where is our outrage?
Again, 9 children die of cancer every single school day. Like 20 month old Alana who lost her battle with AML a few weeks ago. Or 4 year old Michael who was sent home to die two weeks ago because there was no other drug available for them to try.
Or 2,998 other families and other stories exactly like theirs.
We are not insignificant.
Posted by Candace Hultgren. Posted In : The Orange Ribbon Campaign