Sunday, April 28, 2013

The “Why”

Friday night, I was as proud as I could possibly be of my boy.

This guy:

Became this guy : Jeep's After Picture

And donated this:


to help a child who has lost their hair to a medical condition. He went ahead and raised money for St. Baldrick’s while he was at it, raising over $3,200.
(I gotta be honest. Right now? Still pretty proud.)
I forget sometimes though that people don’t know why we care this much. Why my son, at 9 years old, decided to grow his hair until it would be long enough to donate. Why he smiled through three years of being mistaken for a girl, and endured endless questions about when he was going to cut that hair.  I hope it helped him that his dad and I were so supportive of what he was doing, that we never hesitated to explain to people that we were incredibly proud of what he was doing and why.
You see, our awareness of the reality of childhood cancers began in 2005, when Jeep was just 4. A little girl in his Sunday School class was diagnosed with Stage IV Neuroblastoma, an aggressive cancer of the adrenal system. Her diagnosis came just days before her fifth birthday. Her name is Morgan, and she was our friend. And so? We talked about it. Morgan was sick, and the doctors were going to have to try to make her better. It was going to make her hair fall out, and there would be lots of Sundays that she wouldn’t be at church with us.
When Jeep started kindergarten a little over a year later, Morgan was a first grader at our school, and we saw her after school every day, when she was well enough to be there. You see, the treatment protocol for neuroblastoma involves several rounds of chemo, surgery to remove as much of the solid tumor as possible, maybe more chemo, some radiation, then a bone marrow aspiration in the hopes that they can get clean marrow. Why do they need clean marrow? Because they then attack the body with enough chemical to kill off the marrow still in the body of an innocent child, and then they return the “clean” marrow to the child and hope it sticks.  Then there are days, weeks, months of isolation. The fear of contracting an illness before the marrow has fully recovered is overwhelming. Your bone marrow is what provides you with your immune system, and for a child who is already weakened by chemo, and who has no immune system, a simple cold that inconveniences you or I? It could be a death sentence.
Morgan’s cancer wouldn’t give up, but neither would her family. Her mom and three younger sisters packed up and they went to New York to be part of a clinical trial, hoping that it would be her cure. Lots of times, her scans would show improvement, things would look better and better, and then? A new spot. Another tumor.
Eventually, after fighting for more than half of her life, on October 2nd of 2010, Morgan passed away.
Early in Morgan’s treatment cycle, we connected with another family whose 2  year old was diagnosed with the same cancer, about 2 weeks after Morgan’s diagnosis. The girls underwent essentially the same treatments, just a week or two apart. Colette is a survivor, but the impact of the treatments on her body are still very much an unknown. Her hearing was severely compromised, and she wears hearing aides now. She’s still to young to know for sure what the impact may be for her in regards to her reproductive system, and the risk of secondary cancers as a direct result of the treatments she received are very high.
In 2011, another friend’s son was diagnosed with medulloblastoma, a brain tumor. Again, treatments, surgery, more treatments.
The part that crushes me is that when you see marketing from cancer fundraisers, you frequently will see young kids. What you don’t see, the reality of it is this:
  • There are 12 primary forms of pediatric cancers.
  • 1 in 330 kids will be diagnosed with some form of cancer before they are 20.
  • Most pediatric cancers are treated using lower doses of adult treatments. Research is needed to provide kids with safer treatment options, providing them with a better future.
  • Less than 5% of the federal government’s total funding for cancer research is dedicated to childhood cancers each year.
  • In 2009, the American Cancer Society spent $22 of every $100 raised on fundraising expenses, $6 on management, $14 on research for adult cancers, and spent $0.60 of that same $100 raised on research for childhood cancers. Sixty cents.
  • Worldwide, each day another 720 children are diagnosed with a form of pediatric cancer, and 250 kids lose their battle.
No one asks for cancer. Some make choices that they know carry a higher risk – smoking, sunbathing, etc, but kids?
Kids have done nothing.
Think about the people you know who have been treated for cancer. Think about how sick they were with chemo. The pain in their bodies. The surgeries. The recovery.
Now, imagine that they’re two.
THAT is why we fight. The reality of it is why I’m passionate about it, and Jeep embraced it early on.
Possibly my most favorite part of Friday night was much later, in the quiet of our own home, as we prepared to say goodnight, as I rubbed his fuzzy shorn head, I asked Jeep if he was glad he’d done it.
“Oh yeah.”
Would you do it again?
“Over and over.”

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