Today marks the beginning of Childhood Cancer Awareness month. For me, awareness isn’t about the fact that childhood cancer exists. We all know that—and we are all horrified by it.
Childhood Cancer Awareness Month is more about the facts surrounding childhood cancer—things that, even as Alex was battling Ewing’s Sarcoma, I still didn’t know.
Let’s start with the drugs used to treat Ewing’s Sarcoma.
I told myself, “If she’s facing cancer, at least it’s at a time when the medical community is making great strides.”
That is true for cancer in general. It is not true for Ewing’s Sarcoma and other childhood cancers.
The treatment for Ewing’s Sarcoma hasn’t changed in decades, nor has the prognosis. Only 20 percent of people diagnosed with metastatic Ewing’s Sarcoma live longer than five years.
The next thing I didn’t know was why.
Surely if something is killing children, it would be a priority. Not so. Only four percent of the National Cancer Institute’s annual budget goes to childhood cancer research. Why? Because childhood cancers are considered rare and the funding goes toward more prevalent cancers.
Pharmaceutical companies donate large amounts of money toward cancer research. But that is also earmarked for more prevalent cancers because, in the end, they want to sell more of their products. Rare cancers are not going to generate a lot of product sales.
That’s what I didn’t know.
While Alex was fighting for her life, while her family was fighting with her, while her medical team was doing everything in their power to save her, the funding available was never going to help her.
I get it. Spending the money we have to help the largest amount of people makes sense.
Still, I thought Alex and every child like her would benefit from the great strides being made in treating cancer.
She didn’t.
She was never going to.
I was not aware of that. Now I am.
I am not bitter.
I can’t point a finger at anyone and say, “You shouldn’t spend so much on lung cancer research, or breast cancer research, or prostate cancer research.” All cancer research is good.
I am just aware.
I’m aware that, if funds are to be raised to help children like Alex, it’s incumbent upon people like me, who have been touched by childhood cancer, to do something about it—to spread awareness of the need for research and hope that like-minded people will show support.
There are brilliant people doing the work. They just need money to get it done—to find the answers so Alex’s story doesn’t have to be someone else’s story.
So I’m doing what I can. I am using my voice to create awareness and joining the team from Johns Hopkins Hospital in the Million Mile to support pediatric cancer research.
If you’d like to help, you can do that here.
Alex’s Lemonade Stand Foundation (a separate organization supporting pediatric cancer research) will match all donations.
Mitch and Dakota are participating in the Million Mile this month in Alex’s memory. They are raising funds for childhood cancer research so Alex’s story doesn’t have to be someone else’s story.
You can donate here.
All donations are matched by Alex’s Lemonade Stand Foundation.
Another nice story Mitch
This month/story really hits me hard. I can’t even imagine this happening to a child w/ “fair care treatment” just does not make any sense.
Seeing this from the outside hit me in a more personal way.
Meeting Mitch throughout my daughter H/S years @ PMHS doing what he loves best, photography created a different kind of friendship which I never had. The before games snacks. Drinks and laughter was fun.
Not ever meeting Alex, but hearing story’s from the past I felt she knew I was there to support her Dad. Just being there to let him know it is ok, your emotions will be what they need to be, my purpose from the man above was to be an emotional or an ear for support. My goal was to help Mitch stay strong.
From our crazy happenings over the couple years until he moved will always be inportant to me.
Mitch I can not thank you enough for be a true person and friend
Stay strong buddy as I KNOW this is what Alex wants you to do.