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.




 

Friday, July 31, 2020

A Different Story to Tell


I couldn’t sleep last night. I miss this face. With so much on my mind, I’m not sure I slept at all. 

Years ago, I would have gotten out of bed and started writing a blog to clear my head. I could settle my anxiety by expelling all of those thoughts from the day onto virtual paper, so to speak.  But back then, I had a story to tell.  I shared messages of faith and hope as I navigated a life-changing journey that altered my soul. 

Last night, as I debated getting out of bed, I was weighed down by the reminder that I don’t have a story to tell anymore.  The best five years of my life are forever behind me. But after two cups of coffee this morning, I settled on the notion that I still have so much to share - it’s all just very different.

August 11 will mark TEN YEARS since my husband and I took him to the hospital for the very first time, never imagining the news that would confront us.  Brain tumor. Surgery. Chemotherapy. Radiation. The words were garbled - spilling out of the doctor’s mouth while the walls melted all around.

Ten years ago, in a small conference room with no windows, I died my first death.  The person I was just minutes earlier had vanished for eternity – just like that.  Replaced by a girl with a broken smile and a nervous edge. 

We are also nearing EIGHT years since Ty died, taking another version of my former self with him. I have been trying to pick up the pieces and rediscover the person who remains, but still I struggle to figure out who that person is.  I find that life is so sad yet beautiful… tragic yet exhilarating.  A gift to be treasured, regardless of what’s inside. 

Tomorrow, we should be hosting the EIGHTH Annual Muddy Puddles Mess Fest in Ty’s memory, and in honor of all kids like him who suffer from such an unfair cancer diagnosis.  We should be busy planning for our EIGHTH Annual Super TYathlon in September. These events mean so very much to us.  Our hearts explode with gratitude to see thousands of people get behind our cause year-after-year and gather to remember our son. But alas, 2020 arrived with different ideas and sweeping casualties for all of us. 

Since March, we cancelled so many fundraisers, including: SuperTy Bowl, Muffins in May, WOD’ing for SuperTy with Pawling CrossFit, The 90’s Party with Partner’s Gym, Party with Peppa, our first TLC Golf Outing, BBQ for a Cure, Muddy Puddles Mess Fest, Welly Walks at preschools nationwide, Muddy Puddles Birthday Parties at the Little Gym, Westlake Spirit Week, and potentially more.  Wow, what a list.  What a huge loss for childhood cancer research.

It’s no wonder I couldn’t sleep. 

Since diagnosis day ten years ago, I’ve tried to live a life with purpose.  Lou and I have redirected the time we should be parenting our oldest son in an effort to fundraise for childhood cancer research.  A day doesn’t go by that we don’t work toward this end, and that is the truth.  Not one day passes.

It is very difficult to accept that everything we have worked SO HARD for has been brought to an abrupt halt.  We’ve made huge commitments to invest in research, but the lab doors were closed before our eyes and our ability to financially help reopen those doors is in jeopardy. The reality we are faced with is nauseating. We have come too far to stop now.

Anyone who followed Ty’s journey knows it is not my style to end on a sad note, though.  So here are my silver linings – and they are pretty incredible.  Ty continues to work his magic, that I am sure of.

First and foremost.  His brothers. Gavin is eleven and we are two peas in a pod.  I just love spending time with him. He is sweet, calm and content with a peaceful energy.  And he is the all-time best big brother to Bodhi. 

Bodhi, on the other hand, is a ball of fun and mischief.  He has the exact same laugh as Ty and he loves to be funny.  And when he is up to something silly, he opens his mouth to smile wide and his eyes light up with such joy that I have to catch my breath.  It’s like getting a glimpse of Ty in the room for a split second.  And, unlike Gavin, Bodhi has never passed a puddle without jumping in it. He loves it!



Second, we are down but definitely not out.  The heaviness of knowing that there will be no mud pit to build tonight, no Mess Fest to enjoy tomorrow, certainly hurts.  Every year I have been so worried about bad weather, yet every year the clouds magically disperse, often leaving behind perfect muddy puddles for the kids to enjoy. 

This year the clearing of the clouds has emerged in a very different fashion. Our biggest partners in his fight – EntertainmentOne (Peppa Pig) and The Little Gym - have helped us clear a path forward in the form of hosting a series of Virtual Mess Fests.  Generous sponsors like Hasbro, FatSnax, and Band Aid are kicking off our fundraisers, and we are so incredibly proud to be aligned with such tremendous brands that share our passion to help kids with cancer.  Please, if you know any children who might love to get messy at home with Peppa Pig, please share the link with them.  This just HAS to be big.  Ty would be SO proud. For more information and to register, visit messfest2020.org.

That’s not all.  Our incredible community of support has already shown us that they want to keep helping, even if our events are going virtual.  The Dirty Dunk, Team Ty, and the virtual 5K are all underway, and we hope you will consider fundraising for us or contributing to an existing campaign. 

I’m doing the Dirty Dunk with Bodhi this year!  I have a bag of dirt and a kiddie pool with my name written all over it.  It won’t be the same from home, but we are making the best of it.  You can join the team, too!  Visit dirtydunk2020.com to donate or join the team.



Lou is leading Team Ty as they participate in a very small, socially distant triathlon around Lake Mahopac (nothing can stop these guys!). Please read his beautiful post here https://charity.gofundme.com/o/en/campaign/8th-annual-tyathlon/louiscampbell.



And anyone can sign up to participate in our virtual 5K. I have run a few virtual races since March, and I am 100% honest when I say that I enjoyed it just as much!  Please walk or run “with” us to help fight childhood cancer. Anyone can register here.

September is Childhood Cancer Awareness Month and we are asking businesses everywhere to consider putting out a collection jar for the month, or purchasing a window cling to show your support.  If you are interested in learning more about our “Bucket Brigade,” please email me at info@superty.org.

We will continue our “go gold” initiatives in Hawthorne and surrounding towns to honor Westlake Spirit Week, and we will be releasing a “Save the Date” for a virtual wine and cheese pairing hosted by McKinney and Doyle and Pawling Bread Company very soon!  CAN’T STOP WON’T STOP.

Last but certainly not least, there is love all around us. I leave you with a photo of this painting by Mary Pallotta.  Mary has loved Ty since day one, and she continues to show us how much he means to her.  I can’t even express how special this is. All we ever want is for our boy to be remembered.  Thank you, Mary. Our hearts are full.  









I miss him... BIG MUCH

It's been so long since I've written a blog.  Ty's Foundation recently pledged a three-year gift to support the Gift From a Child initiative.  We are so proud to be part of this incredible program that is changing the landscape of pediatric brain tumor research.  I pasted the introduction to my latest blog here, and hope you will read more.

I took my toddler to the emergency department after a sleepless night, insisting that perhaps he was suffering headaches. Wearing a bright yellow t-shirt that matched his curly blonde hair, cargo shorts and flip flops, Ty jumped and giggled his way into the sunny room at the local children’s hospital. I was met with looks of surprise and confusion by the staff, but my husband and I could see his tired eyes behind that smile and insisted on an MRI.

Just shy of three-years old, I winced when the needle pierced the skin on his arm. I was nauseated as I held him limp from the anesthesia, certain that would be the worst of it. How very wrong I was. That day marked the first of countless needles, MRIs with sedation, hospital stays, and so much worse. For two and a half years, his pain became routine, the cancer—relentless. 

READ MORE

https://giftfromachild.org/2020/07/07/big-much/