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/

Tuesday, September 3, 2019

A MESSAGE THAT BEARS REPEATING


September is Childhood Cancer Awareness Month. In the hopes that new readers might come across this post (please share), it is important to start off by stating the fact that my son, Ty Campbell, died in October 2012.  He had just turned five years old.  We will never really know if it was the cancer itself or the treatment that ultimately took his life, but we do know this: he died because there were not enough safe and effective treatment options available to him, which is the same reason why any child loses his or her life to cancer. 

After trauma, CANCER is the number one cause of death in children.  Not enough is being done to advance cures.

This photo was taken two weeks before his tumor was discovered (he was two years/ten months old). Over the course of 26 months in treatment, Ty had more than 20 surgical procedures.  Any parent who has ever had the difficult experience of leaving a child in the hands of a surgical team – whether for something as harmless as ear tubes or as brutal as a brain tumor resection – can imagine how difficult it was every single time.



 He was returned looking like this…

And like this…


And like this...

And like this...


My heart can't possibly break more.

He was my greatest gift.  My biggest responsibility in life.  And I allowed this, over and over and over again.  He suffered tremendously as a result of our efforts to cure him, and still he died.  The blame I place on myself for losing him is my own cross to bear, I can’t change the past and I have come to terms with it.  I have.  

However, the blame I place on the pharmaceutical, medical and research community is something that I can do something about.  It’s something we can ALL do something about. 

Childhood cancer is everyone’s cause, because every child is vulnerable to this disease.  
  • A child is diagnosed with cancer every two minutes.  
  • There is no known cause, and it does not discriminate. 
  • The majority of agents in use today are not designed to treat the unique pathology of children’s cancers, and they can be very harmful to their small, developing bodies.
  • One out of five children will not survive their cancer more than five years, and of those that do survive five years or more, the majority suffer severe long-term side effects that impact their quality of life (including secondary cancers).
  • Research and development from pharmaceutical companies comprises 60% of funding for adult cancer drugs, and close to zero for childhood cancer drugs.
    • Therapeutic discoveries in the lab are not profitable for pharmaceutical companies to manufacture because the volume of drugs used is comparatively minimal. 
  • At the same time, childhood cancer receives less than 4% of the national budget for research, creating a huge funding gap that leaves small, family-founded nonprofits like ours working relentlessly to supplement that funding and fill that gap.
  • The clinical research landscape is complicated, resulting in progress at a snail’s pace.  For example, the average time for a therapeutic discovery just to be tested in humans is 5–7 years.  For pediatrics, that wait time only increases. 
  • The possibility of discovering appropriate therapies can be limited by accepted research standards (e.g., large-scale/multicenter requirements, testing single-treatments one at a time rather than jumping right into combinations that we know are more effective, placebo-controlled studies and narrow eligibility criteria). 


Thankfully, many people now know and understand these facts.  I credit the parents of children with cancer who have done such an incredible job raising awareness.  The gold ribbon is seen far and wide.  I can’t open a social media channel without seeing posts in September about Childhood Cancer Awareness Month. I am so incredibly proud of the awareness we have raised over the past decade.

Now that you are aware, it is up to you to take action.  If we are going to change these statistics, we need to turn awareness into impact.  Share this message about childhood cancer awareness month. Sign up for a 5K (the TYathlon in memory of Sweet Sally Sunshine is on September 14).  Make an effort to deliver on at least one random act of kindness and leave a note behind about a child who you are honoring (you can even request free kindness cards here).  Donate to your favorite childhood cancer nonprofit working to improve treatments for children.  Support legislative efforts to increase research funding and write your local representatives to demand more than 4% funding.  Encourage your children to get involved, they can sell painted rocks, seashells, lemonade, etc.  Check out Wildcats Spirit Day, Goals for Gold or the Blue Lollipop Project for fun and creative ideas. If your children are in preschool, consider asking their teachers to host a WellyWalk or Pajama Day Fundraiser.  Shave your head for St. Baldrick's! There are so many hands on ways to make a difference. 

In memory of the angels, in support of the fighters, in honor of the survivors, I thank you.  Together we can make a difference during Childhood Cancer Awareness ACTION Month and beyond.  

Wednesday, July 3, 2019

Hazen, forever 5



I rarely blog anymore.  I don’t have a story to tell anymore. And that’s because I don’t have a son with cancer anymore.  My beautiful boy who captured so many hearts died six and a half years ago. 

But three weeks ago, I found myself with tears in my eyes and as our seventh (!!) annual Mess Fest fundraiser is approaching, I thought it would be an appropriate story to share. 

Alexandra Garcia – Alex – was just a little girl when Ty was sick.  Her brother Michael was still a toddler.  I didn’t know her or her family, but Alex’s mother is such a deep and caring person that she injected herself into my life and I am so grateful for her friendship ever since. 

This family travels for hours from their home in Westhampton to attend our events.  They volunteer.  They devise plans behind my back with a team of my favorite fairy friends to purchase plane tickets for our Mely to visit with us time and time again. 

Alex has grown into a thoughtful young teen who shares her mother’s generous heart.  She spoke to her teacher at school, and asked to host her very own “Mess Fest” in Westhampton this year.  The next thing you know I’m getting a call from her teacher, Kelly, whose voice I recognized with surprise as memories of my school days came rushing back… of course, I knew her.  Ty always arranges such "coincidences."  

The event was amazing.  Alex and Miss Russell planned and executed a flawless event.  I drove down there with Bodhi and a car full of supplies to help them with the Mess Fest, including our signs.  The signs feature photos of children who underwent cancer treatment, and it was the signs that compelled me to share this update with you…

Hazen has a freckle on his cheek.  His freckle brought me to tears.

How come I never noticed?  I treat these signs with boundless love!  I clean them off carefully after every event, which means I have cleaned Hazen's sign over a dozen times.  I never met many of these children but I know that Kai wears a green crotchet headband and that her adorable right ear sticks out more than her left.  I know that McKenna is missing her top left tooth and that her photo was taken on her first day of first grade.  I know that Rett has the bluest eyes I’ve ever seen.  I never noticed that about Hazen though, and as I wiped slime and paint splatter from his face to reveal this cute little freckle on his left cheek, the tears filled my eyes and they didn’t stop for days.

Tears because I will never get the chance to meet any of the children with the word "forever" under their names.  

Tears because they never got to experience a Mess Fest event, where we celebrate them with such fun and laughter. “The best day of the year!” I have been told time and time again.  And it is… it really, really is.  

Tears because I am just so very sad they are gone.  I know their stories and I know how they suffered, and how their families continue to suffer without them.  But I also cried because a beautiful thought crossed my mind. 

They HAVE seen the Mess Fest.  The spirit of these children is felt everywhere, and their laughter echoes across the grass all day long.  The vision of their very signs splattered with mud shows me that they are, indeed, participating – and getting dirty just as they should be. 


Ty never jumped in a muddy puddle after he was diagnosed with a brain tumor.  But now he is free and his spirit will be everywhere at Mess Fest on August 3rd.  He will be jumping in every puddle he can find. 

If you are on the fence about coming to this event, I hope you will just “jump in.”  A very small team of dedicated individuals work their tails off to deliver an incredible experience for everyone who attends – a true celebration of childhood – all to help change the outcomes for children with cancer by funding research.

In honor of the survivors, in support of the fighters, in memory of the angels…. Join us to celebrate the kids. 

Visit the magic show to see “Amazin’ Hazen” (as he liked to be called), and admire his adorable freckle. 



If your family has been impacted by a childhood cancer diagnosis and you would like to have a sign made in honor of your child, please feel free to fill out this google form.

photo credit: Laurie Spens 2018


Alex and friends at the Westhampton Mess Fest!