Thursday, September 17, 2020

It Should Have Been Me

On August 11, 2010, it should have been me.  It should have been my headache, my MRI, my cancer. I was almost 35-years-old and, up until that point, I had lived life to the fullest. I was as carefree as I was careless. Money burned a hole in my pocket, I traveled often, I loved concerts, I beached it in the summer and snowboarded in the winter, I ate whatever I wanted, I smoked cigarettes (and weed), and aside from pregnancy, I probably hadn't gone one weekend without drinking since I turned 21.  I loved life and I enjoyed the shit out of it.  

Well, there's some honesty I haven't yet shared on this blog! Sorry to those I offend, but this was never a place where I downplay the truth.

I was married to my best friend, I was a new mom to two healthy boys, and I had seen very little loss in my life thus far. My heart was the fullest it will ever be because no matter how much new love may enter my life, the part of my heart that left with Ty can never be replenished.  Once a gaping hole, now a slow perpetual bleed. 

But I only know that now - in hindsight.  If it were me at the time... if I had been diagnosed with a deadly brain tumor at 35-years-old, I would have thought, "What will my boys do without me? I'm too young! I need to see them grow up! I have so much more living to do! Why me?!?!?"  Rightfully so.  But had I been given the choice between me or him - it should have been me. Any parent in my shoes would say the same. I lived enough, and I wanted my two-year-old son to have that same chance and more.

And it's not just the life experiences he'll never have. It's the unimaginable pain he endured for half of his life. It should have been me!  I look at Bodhi, I listen to him play, and I try to imagine what it's like inside a little 3-year-old mind when he has to go to the hospital every day for chemotherapy; when he loses his ability to walk, throws up daily, wakes up from anesthesia to find a tube in his stomach, or worse, wakes up intubated after brain surgery. And so much more. Terrible, horrible things happened to him on a daily basis, I have to stop myself from thinking about it because it nauseates me.

There is no bargaining in life. You can't trade wealth for health, or one life for another.  There are no "do-overs." I begged and pleaded with God.  I asked the Universe. Still, here I am - here he is not.

There is a lot of pressure that comes with knowing it should have been me. I am here, I am healthy, and I have to try my best to be a good human. Many days I fail, but then I read the news or glance at Twitter and pat myself on the back because at least I'm trying. This world is a trash heap and we can do better than this, can't we!?! 

When our fundraising efforts fall short, I feel like I'm failing. I beat myself up every time I think our nonprofit isn't growing fast enough, or that the research we invest in isn't saving enough children. I meet families with kids in treatment almost every single day, and it never gets easier knowing the difficult path that lies ahead of them.  

Bad things are happening every day - really, really bad things. Nothing makes sense. This life is hard. But I do find some comfort in getting older, I guess.  I like the wisdom and the sense of calm that is starting to come with it.  

For years, I had truly forgotten what it felt like to be happy.  I continued to travel and entertain, but it was to escape life, not to embrace it. About a year ago, I was making my bed and for no reason whatsoever I was humming and smiling as I snapped the sheet. I caught myself and I thought, "Oh my God, I am happy!" I barely recognized the feeling, so spontaneous and unexpected. I wasn't chasing after it with vacations, birthday parties, fundraisers or social gatherings.  It just found me again, in the form of sunbeams through my windows and the smell of fresh linens. How simple. How lovely.

I can't wait to see Ty, but until then I have a lot to do. I have to make sure Gavin and Bodhi grow to be men who work hard, respect others, and fight for what's right. I have to do my part to help preserve this beautiful planet. I have to keep advocating for children with cancer. I know I am relentless (borderline unbearable), but I have to keep fundraising for research. Can you believe we have already funded 13 innovative projects for kids with brain tumors, sarcoma and relapsed leukemia?  All research projects, and every researcher working in the field, are advancing the science toward cures. And, without Ty's loss and our nonprofit in his memory, there would be 13 fewer such advances.  That means so very much.  When I die, I hope I die knowing that I did my best to honor Ty's memory and to drive change.  

It should have been me, but it wasn't.  So I am trying hard to make sure that if I have to live without him, I live with purpose.  And however you may have supported that purpose, whether attending events, convincing your friends to join you, fundraising, making donations, volunteering, jumping in muddy puddles to raise awareness, or sending words of encouragement to my family or others like us, those actions have purpose and together we are making an impact.  I thank you.  

True Love. Photo Credit: Janice McCreay

September is Childhood Cancer Awareness Month - pass it on. 

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.