Tuesday, September 1, 2020

Cancer is a War

On this day eight years ago, Ty told me he wanted to play in the sprinklers.  He hadn't stood on his feet independently in two years, and he was losing his motor skills at an increasing rate with each passing day.  I wrote:

"I swear, sometimes I think he forgets his limitations and what he has been robbed of.  It is a child’s right to run through sprinklers in the summertime.  To sit in circle time at Kindergarten.  To hit a baseball.  To have a best friend.  A girlfriend or boyfriend!  To go to college.  To get married.  To have kids of their own. We need to do everything we can to help save these little cancer warriors and to protect them from a lifetime of chronic illnesses or handicaps."

On September 17, I would sit in the backseat of our car with him sleeping in my lap as we pulled away from the hospital, knowing it was for the very last time.  

I still can't believe it sometimes. This wasn't supposed to happen to him. He was just too sweet to suffer like that. And surely a child wouldn't suffer like that only to die in the end? 


This face... After eight years, I can look at his photos and smile. I can experience flashbacks and be grateful that I still have them.  I can walk the aisles in the supermarket without worrying I might break down into tears at any given moment, without even being able to recall what triggered it.  My grief will be forever present because it is a reflection of my love, but it is an ever-changing journey and I have grown as a person because of it.  

I may be able to genuinely say that I am okay now, but what happened to my son and what is happening to children around the world is not okay and it will never be okay.  Like I said eight years ago, we need to do everything we can to help save these little cancer warriors and to protect them from a lifetime of chronic illnesses or handicaps.  

September is childhood cancer awareness month.  If you haven't seen this image shared on social media, please take a moment to digest this now.  This is an accurate picture of how it was when Ty was diagnosed, and it is an accurate picture of what a child's experience is, today.  We can give our children monikers to empower them, SuperTy, Mighty Mikey, Breanna the Brave; We can have parades for them; We can wear gold ribbons and make bumper stickers; but until we uncover new ways to treat children more effectively and get those innovative treatments into clinic, they are still left to stand on the edge of a cliff as we try our best to support them. Forced to take a leap of faith in the brutal treatments that await them. CREDIT: @idrawchildhoodcancer, a cancer dad who understands this, first hand.



We sing "fight song" and we talk about "beating cancer," but this is a game of war, and a war of any kind can't be won without tremendous loss. You can't go to war without significant consequence, and you can't give children poison to kill their cancer without expecting that poison might also harm their healthy cells, damage their organs, wreak havoc on their endocrine system, etc.  

  • One out of five children do not survive the first five years post cancer-diagnosis.
  • The Childhood Cancer Survivorship Study at St. Jude shows that out of the children who do survive, 70% of children reported chronic health conditions post-treatment, half of which were categorized as severe, disabling or fatal.
  • Survivors have physical side-effects that can be seen like amputations, wheelchairs, trachs and feeding tubes.
  • They have side effects that can't be seen like heart conditions, respiratory disease, hormone deficiencies and infertility.
  • A child that undergoes chemotherapy has a 30% greater chance of developing a secondary cancer later in life.
  • Survivors of childhood cancer are very likely to develop mental health symptoms including anxiety, depression, suicidal thoughts and PTSD. 
  • Childhood cancer survivorship statistics are inaccurate because they don't account for children who die of treatment-related side effects. If the cause of death on the certificate isn't listed as cancer, that patient will still be considered a survivor.
There is so much work to do, and so many facts to share about why this is such an important cause to get behind, but in light of the current news environment that is so heavy and sad, I want to follow the lead of John Krasinski by ending this post with Some Good News (#SGN) about childhood cancer awareness.
  • Ty's foundation has pledged $1.6 million dollars toward research, and funded 13 unique research projects across the country.
  • Amazon is going gold again, in support of raising childhood cancer awareness. They have committed to deliver millions of uniquely designed #gogold boxes to customers, and the Amazon Prime Airplane will also display a gold ribbon. 
  • Solving Kids' Cancer will be hosting their annual #LaceUpforKids campaign, and you can learn more about requesting your gold laces here.  
  • Gold ribbon merchandise can be found pretty much everywhere, and it was non-existent when Ty was diagnosed ten years ago.
  • Research labs are open again! 
  • Cancer researchers are still hosting important conferences online, ensuring that important information sharing doesn't come to a halt in the wake of shutdowns.
  • Childhood cancer fundraising events, like our beloved MESS FEST, have seen success after going virtual
  • In fact, TLC for families gave financial support to Addyson in 2017, and she is thriving after being treated as an infant for Ewing Sarcoma - Ty would be so proud. She couldn't have been more surprised (and thrilled) to receive her own personalized letter from Peppa Pig!



The childhood cancer community has come really far. We continue to suffer tremendous loss, but we are winning this war. Thank you for taking this journey with me and my family. And thank you for continuing to raise awareness this September.




 

1 comment:

  1. I will never forget coming to you from a blog post I saw on Huffington Post many years ago. Every day I would anxiously await an update. My Alex was the same age as Ty. Ty has made such a huge impact on this world, and my life personally. I am in awe how you and Lou, and your amazing team, day in and day out, fight so other kids can have a better chance than Ty did. I have said it before and I will say it again, you are an amazing person. I couldn't do it. I wouldn't have the strength. I'm too selfish. . .

    But you are the epitome of selflessness! You are such an amazing woman, and I love all you're doing for childhood cancer. <3

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