ORLANDO, FL -- June 11, 2016
Original Facebook (FB @cannonballingcancer) post describing the Emmi Grace Applesauce Study and CKc's inspiration for the trial. Post is authored by CKc Co-Founder Melissa Wiggins.
Emmi Grace has gone to Heaven. As her mum Monica said "She is a Saint, she is white as snow." She was perfect! She is perfect!! She was 5 months old.
Science failed Emmi. Lack of funding for the RIGHT science failed Emmi!!!
We MUST do better!!! We MUST take the action!
I wish we could have funded more research for Emmi. Wish??? Wish isn't strong enough for what I want!!! All I know is her parents Monica and Ryan are fighters like Emmi. They cannot un-see what she went through and they will change it!! They will!!! They are strong like Emmi! Just wait...
My heart aches! My body hurts! The pain of what Emmi, Monica, Ryan and all the family is enduring is unbearable to even imagine!! But this is not about me, this is about what the @#*! do we do to change this!
What do we do to change the fact that only 3 drugs have been approved by the FDA for children in the last 30 years?
What do we do about the fact that Emmi received Cisplatin, a drug designed for male testicular cancer. That's right, male testicular cancer. Discovered in 1965!
This is not the oncologists fault! They have a toolbox! And their toolbox sucks!!! They don't have the right tools to fix Emmi! So we must do better! We must FUND research for CHILDREN!!! Why? Because children are NOT small adults! Their organs cannot handle it like adults, and if they happen to survive cancer, the side effects will haunt for the rest of their lives!!! That's a fact!! I see it with my son! I have lived it and live it with him everyday! Speech, hearing, eye, digestive, height, fertility - all issues we deal with or will deal with!!! That's NOT OKAY!!!
At Arnold Palmer Hospital for Children, our local hospital, 7 children have died in the last six weeks! Stop telling me it's rare!!!! It's not RARE!!!!! It's everywhere!!!!! And I'm sick of it taking my friends' children! Our children! Your children! Your grandchildren! Your neighbors' children! Our future!!!
Please please pray for my friend Monica! For her husband Ryan! For their baby girl Emmi and the ENTIRE family!!!! This is not how it's meant to be!!!!
I wrote this post below before she went to Heaven.
I have fire in my belly. Hands down, without question, my absolute favorite part of working in the pediatric cancer world is the idea of saving lives. I mean, what else is there?
As I type this post my friend Monica just sent me a beautiful picture of Emmi Grace. She is perfect! Beautiful. She is 5 months old. She has brain cancer. She is dying.
Monica and Ryan don't know how many more days or hours they will have with their baby girl. But they know it's not long. Can you imagine? I can't.
So instead... I do what we can and what Team CKc has made possible and I drive to Augusta, Georgia on Monday.
When Emmi was diagnosed, Monica and Ryan, like most parents, researched so much to find treatments and help for their baby girl. Sadly for ATRT brain cancer, there isn't much. In fact, they couldn't find one trial that would allow a child under age 3 on it. So what were they to do?
When Monica explained this to me, I immediately picked up the phone to Dr. Johnson on our scientific advisory team and asked him why! He explained to me that children under three cannot swallow the horse-sized pills in many trials. In fact, the very trial we funded at Georgia Cancer Center had to REJECT children on the trial (which included ATRT kids) for that VERY reason. Dr Johnson and our CEO, Ashley VanDerMark, had already discussed some possible ways to prevent this, but of course it all came down to money and finding the funds.
On the night of the CKc Gold Gala, we knew we had made over $150,000. That would allow us to fund $75,000 for a relapsed rhabdomyosarcoma trial in honor of Trevor Sheerer and $75,000 for a relapsed neuroblastoma trial in honor of Ava Crowley. We knew we could also fund Dr. Johnson's Applesauce Trial.
On Tuesday, not only do I get to meet some of the 9 patients on the trial we helped fund last year, but I also get the absolute honor and privilege of presenting a check for the
"Emmi Grace Applesauce Trial"
This trial is a new trial that is another arm to our original trial. It will test the efficacy of the trial drug given via applesauce comparatively to swallowing the drug. The hope is that the results will show that it is the same efficacy and that we can seek FDA approval for the drug to be administered this way. This could be a game changer for younger children. Imagine??? It seriously is the gas in my tank! Nothing motivates me more than this! There are many arms to CKc, but this is by far the most important!