#NoMoreOptions- Cannonball Kids’ cancer- September 2018

Not too long ago, Melissa Wiggins, founder of Cannonball Kids’ cancer, and mother to cancer warrior Cannon, called and asked if my husband and I would be interested in a project she and her Creative Director Rich Johnson were working on.

 

By way of backstory, when Emmi died, Ryan gave the most beautiful eulogy I have ever heard .  It was more than that. It was a love letter to our daughter. I, however, did not. I was angry.  I wrote facts, figures, statistics. I wrote a “call to action” not a eulogy. While what I was said was not “incorrect”, it was not what I have ever since lay awake at night wishing I had said.  It was awful. I did not honor the love I have for Emmi. Instead, I expressed my frustration and anger at pediatric cancers.

 

Fast forward, Melissa calls.  She says that she and RIch have been thinking about a campaign called #NoMoreOptions to be centered around families like mine.  Instead of the sweet smiles and and bald heads of the St. Jude’s commercials, they wanted to show the heartbreak caused by the 1 in 285 children who will die each day.  The 250 children who die every day. They wanted to help bring awareness to what it is to be told by modern medicine IN THE US that there are literally NO MORE OPTIONS and that your child is left to die.

The horror!  The truth! What was she going to ask next?  She asked me to write a letter to Emmi. Here was my chance!  Let’s do this. Write a letter to Emmi and say what I neglected to say at her funeral.  Perfect. Sign me up! Happy to help!

 

But then…. She went on.  She wanted me to read the letter on camera.  And after that (you know where my heart was ripped from my chest yet again) she wanted to take photos.  Now, to some internet trolls, this was horrible. How dare CKc ask us to do this? How dare they use our pain?  How dare this amazingly creative man post these photos?

 

Let me tell you how.

  1. With our permission and encouragement.

  2. Because for us, it was cathartic as hell!  

  3. Most importantly, it brought awareness to one of the horrible truths of kids’ cancer.  Pediatric cancer is the number one cause of death my disease for children in America (more than all other diseases combined). Babies die.  Children die. Every day, babies die of cancer. On June 10, 2016, my baby died. Along with others. 7 children in the US died that day. 250 children died worldwide- all due to pediatric cancer and its related toxicity.

 

We chose to do this!

I 100%, whole-heartedly believe that if there were one single moment where I had asked Rich or Melissa to stop or change a single thing, they would have!  Their goal was to bring awareness (leading to funding, leading to more research, leading to better treatment options, leading to hope, leading to SURVIVAL!).  If I had said, it was too hard, they would have stopped. When I said, “I messed up!” like the annoying perfectionist that I am) and asked, “Please, can I do it again?”   They smiled and simply said, “Go ahead. Do what you need to do! Go ahead.” They did not force us into anything. Instead, they offered a platform to share the truth and pain we felt (and feel everyday).

 

It was cathartic!

 

Well, for me, it is of paramount importance that my child is never forgotten so any time I get to say her name is a blessing.  Let’s take a moment here.

Say it with me- EMMI GRACE ANGEL!

If I can tell her story, it is a gift.  

If I can tell her story and that encourages others to join the fight, that is a purpose!  

CKc and the NO MORE OPTIONS campaign, helped to give purpose to the seemingly random and terrible death of my child.

 

It helps to bring awareness (and funding)

 

How easy is it to talk about kids battling or dying of cancer?  It is awful! No one likes to do that. Shoot.  My daughter died of cancer and even I think talking about kids’ cancers is awful.  I get that talking about it is depressing as hell. But not talking about it is worse.  I understand the desire to pretend as though this is not a problem we each need to face.  Or why it is easy to want to believe that it is being “handled”.  The alternative is too scary. I get it. Believe me! Most of us (parents who have lost their children), we get it!  It is absolutely terrifying!

 

It could be my child?!?

 

That.  Is. Terrifying.

 

But for us, it was our children.  We do not have the luxury of behaving as though “it could never happen to us” or it is a “far away” issue.    We do not resent you for feeling afraid and wanting stay at arms length. We get it. We hope and pray that YOU WILL NEVER FEEL THIS PAIN!  We are just asking you to push through the discomfort and join us anyway. Well, I am at least. I am asking you to please walk through that fear and join me in the fight. Join us! #NoMoreOptions sheds a light on the sad and very ugly truth that children die every day of a disease that we have yet to cure.  Our government is barely even trying (less than 4% of the National Cancer Institute budget is spent on pediatric cancer research- that is split between the hundreds of pediatric cancer subtypes.) Most basic research is being funded by private institutions like CKC!

 

Children die every day from the effects of toxic chemotherapies designed for adults and “dosed down”.  #NoMoreOptions gave my Emmi a voice- with each share, link, click, conversation, donation made…. for one more day, her voice was heard.   I will be forever thankful for each opportunity I am given to speak on behalf of my beautiful babe and #NoMoreOptions has been a BIG one!

 

So back to the call, Melissa asked if Ryan and I would each do this.  Another amazing couple, Tony and Kelly King had agreed to do so in honor of their son Nolan and his fight with hepatoblastoma.  Even their two other young sons agreed to bravely do this. Melissa explained that they wanted different perspectives involved and asked if one of my parents may be interested in doing it as well… to share the perspective of a grandparent.

 

My mother, who is just about the warmest heart I know, was so worried.  She wanted to honor Emmi but she is not one who ever seeks a spotlight or even feels very comfortable speaking publicly.  In spite of her own fears and discomfort, she stepped up for Emmi, for me, for all children fighting cancer. She agreed.

 

About a month later, my mother and I dressed ourselves in all black and drove to Orlando to meet with Melissa.  It was there that I had the pleasure of meeting Rich for the first time. Now, let me tell you: Rich is amazing. Walking his studio was a quick course for us- this was no small thing. This guy was the real deal- seriously talented.

 

Whenever I meet someone new in this “world” I ask the same question, “Why?”  So, naturally, I asked him why he was doing this. Why CKc? Why kids’ cancers?  Why volunteer his talent and resources? Why open his heart to this? Surely, I thought, he must be a parent of someone with cancer or have a young loved one who had been diagnosed?  There must be some personal connection. Right?!

 

Nope.  Rich is just Richard Johnson of Spectacle, an extremely talented and wildly compassionate soul who heard the facts about kids’ cancers and immediately agreed that they were unacceptable.  He is simply a human being who was paying attention He has since been using his immense talent as the Creative Director for CKc.

 

What an honor to work with him?!  He explained the process and what he was aiming to do.  As I recall, he was quicker to show kindness than any other emotion.  Frustration or annoyance would have been totally acceptable as we fumbled our way through this mission.  But no, kindness was all he and his team showed. He wiped tears from his own eyes as we each read our letters.  

After what I am sure was some gut-wrenching editing by Rich and his team at Spectacle, I was sent #NoMoreOptions.

I have rarely been as proud of anything as I was to be a part of this.  I am proud that a man like Ryan wanted to marry me.  I am proud of my children. I am a good mother, and for this I am proud.  But, for my own “accomplishments”, I have been told that I set such an exceedingly high bar that it is often unattainable.  It is tough for me to be proud of myself. But this- I was and am proud of this.

Yes, I am ugly crying.  Yes, I absolutely loathe when I break down and publicly cry.   And yes this is a giant (sometimes side of a bus huge or billboard gigantic) view for all the world to see.  Yes, it is wildly outside of my comfort zone. No, it is not perfect or every last thing I wanted to say. But I am so proud that my mother and I suited up, showed up, “womaned up” and did this!

#forEmmiGrace

 

To see the full campaign, click here.

 

You may not know this about me- I am wildly uncomfortable with crying in public. I mean REALLY uncomfortable. It took years for me to cry in front of my husband without embarrassment. I don’t think there’s anything wrong with it. I just don’t personally do it. I prefer to cry privately in the shower, car, or on a particularly bad day-in the pool. But hey, it works for me. All that to say that for someone like me, this is truly outside of my comfort zone.

But…. when Cannonball Kids’ cancer asked me to be a part of the #NoMoreOptions campaign, there was no answer but, “YES!” Of course- YES! 

Yes, I’ll do it to help raise awareness for children fighting cancer. 
Yes, I’ll do it to help get people to pay attention. 
Yes, I’ll do it to make people pay attention to the fact that cancer is the number one cause of death by disease in children in this country – more than any of the other diseases combined. 
Yes, I’ll do it to give a voice to my Emmi Grace. 

My mother Loly Martino and I both participated alongside the King family (honoring their son Nolan). 
We all said, “Yes!” when asked to rip our hearts out and share our pain. 
We said, “Yes!” because after what we’ve seen, we can’t say, “No.” 
Saying, “No” is a luxury we lost as we said goodbye to our children. We heard #NoMoreOptions and our fates were sealed. We are now fighters and warriors because the warriors we love are in Heaven and it’s now our responsibility to fight for them… and for all those children still in the fight. 

Through the amazing work of CKc, Michael andMelissa WigginsRichard Johnson, Tony and Kelly King, and so many others, these billboards are in Times Square throughout September. 

I’m so honored to be a part of this amazing campaign and to help CKc create options through funding innovative research designed to be less toxic for children! 

So please take some time this September to help us raise awareness and educate for change. 

Be Emmi Grace’s voice. 

Be Nolan’s voice. 

Be the voice for all of those children who were told there were no more options for them.