What Lighting the White House Gold Would Mean to Me as a Pediatric Cancer Survivor
Pediatric cancer is the number one disease killer of children in the United States. But, it continues to be the most underfunded by the federal government getting 4% of the yearly budget allocated for all cancers. Leaving most of the work up to the parents of these children to find their own clinical trials and raising money for more research into their child’s type of cancer. I have spent more than half my life in the pediatric cancer world, beginning when I was 7 years old and I was diagnosed with precursor B-cell lymphoblastic lymphoma.
Over the course of the year the White House has been known to light different colors for different causes. Such as red for HIV awareness, pink for breast cancer awareness, etc. But I continue to ask myself, why not gold? This is so much more than awareness for the pediatric cancer community. It is a symbol that these children mean something to this country and the fight that they fight daily is recognized on a larger scale.
This fight started for me at diagnosis but didn’t end when chemo ended, and it still hasn’t ended. Part of bringing about change and the way we treat and face pediatric cancer is to get people to understand and realize that these children are worth so much more than that lousy 4%. The National Cancer Institute needs to realize that what they are putting into pediatric cancer research isn’t enough. They can claim it is “rare” as much as they want and let that be the reasoning for the lack of funding, but it isn’t rare.
When someone thinks about something as simple as lighting a building a color it may not seem like much. But it makes people ask questions like “What does that mean?” or “What does that stand for?” When simple questions like these are asked it starts a dialogue to explain and answer those questions. When that happens, those people are now aware about what is going on and that pediatric cancer is so much more than bald little kids smiling and playing in the hospital room. These kids are resilient and fight harder than people four or five times their age, but at the same time they shouldn’t have to fight for their lives at their age. They should be in school just being normal kids.
Pediatric cancer alters your life forever. It has altered my life and the life I thought I would have. I never thought at 20 I would be living at home, going to a small community college and working almost every day. I imagined I would be at a big college living the everyday life of so many 20-year-olds. What I want for all kids is to grow up with a normal life, not being stuck in a hospital room for days on end while their friends are out playing sports and going to school and excelling every day. I could have pushed that time out of my life and out of my head, but that wasn’t going to happen. Every day I see the scar on my chest, the scar on my head or feel the dent left on my head from the tumor is a constant reminder of what I went through yes. But, also what every other kid before and after me has and is going through.
It gives me the motivation to push through my daily struggles of being angry with the fact that I even got cancer in the first place and am just not like everyone else my age. I have come to accept that those feelings are OK but at the same time I can take those feelings and use them in a positive manner so no other kid has to feel that way. So that they may have a chance to be normal kids and the daily life of being poked and prodded by needles is a thing of the past.
As a survivor, I am thankful every day to be alive, but I feel I must use that gift to make a difference. I understand that seeing and talking about cancer is never easy, much less when it is a child who has it, but that must change. If we don’t talk about it and face the reality of it nothing will change, and more children will continue to get sick and more children will either pass away or survive and live with the long-lasting repercussions of chemotherapy and radiation. As a survivor, lighting the White House gold is so much more than a color on a building — it’s a symbol that these kids are not only cared about by our government but our country, and that their fight means something and that there will be a day when no child ever has to fight for the life they deserve. For me as a survivor, this is what lighting the White House gold means and I will fight daily until the day I see it gold.
Getty photo by tupungato