Day 16 – Children's cancer Awareness Month

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This is Michael. Almost every day, I receive an email or message from or about a family that has just had a child diagnosed with cancer. Just this past week, our hearts sank when we were informed that a family in our local St. James Cathedral school community here in Orlando was diagnosed with cancer in their seven year old son. It happens daily, unfortunately... too often. Over 40 times a day in the U.S., and several hundred times a day world wide. It is all just so unnecessary, and regardless of what those in the medical world tell me about the complexity of cancer, I know how little has been put into finding the cause and cure of cancers found in children so I will never allow the "cancer is very complex and difficult" reasoning to become an excuse.

Then there are the days, again almost daily, that we learn of the death of a child to cancer. These are the stakes in our hearts. So unjust and a life lost with so much love and productivity and joy in front of it. Melissa and I have seen and experienced this far too often in the short years that we have lived in the kids' cancer world. Frankly, it is what drives us to stop this madness. I will never forget one of the first times we lost a child that we followed. Soon after Cannon was diagnosed, we began to follow other families that had treated in places where we were going or had been, or had treated for the same type of cancer as Cannon. One of those families was the Grimes family in Vermont, and I wrote about the death of Christopher, age 7. I have kept the post that his mother wrote shortly after his death and often read it to remind me why it is so important to do what we do at Cannonball Kids' cancer Foundation, and why, even though I think it is never fast enough or the amount great enough, that we must continue to advocate for research in pediatric cancers.   

 

Here is that post:

Several weeks ago, I reported the death of Christopher Grimes, a 7 year old boy from Vermont who battled neuroblastoma for four years. I asked everyone to pray for his soul and his family and visit Christopher's CaringBridge page and read the absolute horror of the account of his mother, Kristin, who along with her husband, CJ, sat at Christopher's bedside for 17 hours and watched him die. It was so personal, I chose not to repost it, but asked others to please read it because it is the reality of the children with cancer!  

People often say to me "Wiggins, you are SO negative..." and I'm sure in reading my posts during this month many others have thought the same with respect to my postings about pediatric cancer. For example, why don't I say that 3 out of 4 children LIVE instead of saying that 1 out of 4 DIES? Here's why:  Because the "1" has DIED! Nothing changes that! That is real. It happened, and a child with 70 years of life in front of him or her has been unjustly robbed of life by a disease that few want to talk about, too few want to fund to find a cure, and most would just rather not think about! That is reality! It's not negativity... people are burying their children! Would anyone like to be the "1" and then be expected to say "Well, it's ok, because the other 3 lived"? Of course not. The number has to be ZERO. None. No child should be tortured with disease and treatment and have life extinguished because there's not enough effort to stop it from happening. That is wrong.    

Kristin Grimes posted again this week. Please read here what she wrote and tell me or anyone else that children's cancer is not big enough, not important enough or is not as impactful as other adult cancers. Kristin wrote this past Tuesday:  

 

"... As I sit here to type out my feelings – to get them out – an empty wheelchair sits beside me. It's hard to sit here.

People ask me how I am. “How are you?” It’s such a simple, well intentioned question. But I want to scream and cry and answer “I’M NOT OK!!!!”    But I smile and say it’s OK, even though it’s really not. It’s a living hell.

No one knows what to say to me, nor do I have an answer. I don’t know why this happened but I’ll never know why. My job now is to honor Christopher and to tell Gillian and Daniel stories so they don’t forget him. Rather, their first memories will be of him if I do it right.

I’m having a hard time with memories right now though. All I can see is Christopher unable to walk. I think of the last time I carried him to his bed. I think about how he was paralyzed at the end, but we saw how he tried to lift his head up to give us a hug. This happened a few times during the 17 hours straight when I sat there watching him die. I’m glad he got his hugs and that CJ and I were by his side at every moment.

But now Christopher is gone. He is dead. 

My son is dead.

This is so wrong on so many levels. All I can remember are the bad times over the last few months. The things I saw that no parent should ever see. I saw it, and now I’m scarred. 

I look through the photos on my phone to remember the happy times because I don’t see them when I close my eyes so I have to be reminded. Will the happy memories return without me willing them to come?

So now I am left to wonder who Christopher would have been without four years of harsh chemo treatments. I wonder what he would look like if he wasn't skin and bones. I wonder if he would still be the jokester. I wonder what he would look like if he hadn't lost his hair, then grew it back, lost it again, and again…  Would his change in appearance have changed his personality? Would he still be the boy I knew? 

I’m sure I would have loved whoever he turned out to be. How can you not love this innocent boy with big blue eyes and just want to embrace him in some way? So that’s what we’ll do, but the “what if’s” will never be answered.

We are sad. We feel empty. We wonder what the future holds.

Christopher’s funeral was on September 9. It was beautiful from what I can remember. The only vivid memory I have is when Megan got Gillian and Daniel at the end of the Mass so they could walk out with us behind the casket holding Christopher. CJ scooped up the kids with each arm as he has done so many times before, but there was a vacant spot. Christopher always rode at the top sitting on CJ’s shoulders. I just walked behind them and wondered “Where is Christopher? He should be up top!”

I knew that wasn't possible anymore, but it just wasn't right. Nothing about this is right....."  

 

Pain and tears... the anguish of that is nearly unbearable. My heart has a hole in it and I’ve never met a single person in the Grimes family. This story happens EVERY day. Stop it. Just let’s stop it.  

Please help us. Raise awareness. For Kristin and CJ, Deborah and Sean, Matt and Nicole, Gary and Jill, Melissa and me and ALL the parents who have lived this personal hell, have lost a child unjustly to children's cancer or are battling every day not to, please help raise awareness, please donate blood, please donate time, money and effort to fund children's cancer research so that someday, someday... cancer in children will NEVER exist.