Last night I was up with Cannon most of the night. Cannon had a fever and for the first time we didn't need to go to the ER and stay a night in the hospital (or more) because he doesn't have a port anymore. Sounds simple - sounds small - but it's HUGE!
Cannon has sores in his mouth and on his hands. I think it's hand, foot and mouth, a nasty virus the boys had before. Gray is almost over it and has been home from school all week with me, but Cannon just got sick yesterday. It's impossible for kids not to share everything.
As I type I'm at the gate to go to Alabama to see my daughter. I am super excited but I can't lie - it's painful to leave Cannon after the night he had.
It's amazing what cancer in kids does to change them. Many of the changes may not seem like a big deal to some people but when I compare how Cannon was before treatment, I get so angry.
He can't sleep without a light on his room. There are always lights from the machines in the rooms where the kids get treatment. Before cancer, that was never an issue. He also has a train that must always be going around as he likes the noise. It actually sounds like his chemo machine when it was pumping. Sadly, that brings my just turned 4 year old comfort.
Last night at dinner I made the boys fish and Cannon got so upset at the texture and cried and asked me to wipe all of his tray and hands. My son, MY BABY, never did these things before cancer. He ate like a horse and ate everything. It pains me not because of his reaction but because cancer did this. Vincristine, one of the types of chemo Cannon had, causes neuropathy and makes things feel strange as well as makes you forever sensitive to the sun.
The cancer has given him sensory issues with touch and smell and he must always close doors. Cannon never had an issue with doors and now at school he must always close the gate at the school entrance and the door to the school and if I try to get him going, he gets so upset. His teacher actually pulled me aside and mentioned he kept going to the door at school. I want to scream "Cancer did that!"
Please know that I know many kids have these issues - many parents I know deal with this. My anger is this... it is all UNNECESSARY. If Cannon had been given treatments designed for a child and not used on adults with lung and breast cancer, then perhaps he would be a survivor in a different sense.
A few days ago Cannon had pooped and it had gone from his neck, down his back and to his ankles. It covered him and he needed a bath. Why? His intestine is so enlarged that it doesn't send a message to his brain to tell him to poop and as a result he has no control over pooping. What does that look like in the future? How do I potty train or send my son to school with no diaper? When will Cannon realize no kid in his class wears a diaper? Cancer did that!!! Cancer took my son's control over pooping. That angers me.
Yes, my son is a survivor, but what does that look like?
A life of therapies. Infertility. Speech delay. Sensory issues. Height and weight issues. Secondary cancers. Organ damage. Hearing loss. For some it includes amputation. Blindness. Brain damage. Wheelchairs. The list goes on.
I AM NOT OKAY WITH THAT... for MY kid or YOUR kid!!!
Survivors will and do deal with cancer their WHOLE life. No Evidence of Disease (NED) is not the goal. A life of NED and no side effects is the goal. A cure - that's CKc's goal! That's my husband's and my mission. We need treatments for kids!! Designed for kids. Hand-me-down adult drugs are not okay. In twenty years the FDA has approved three drugs that can be used for children. Everything Cannon received was off-label and adult therapies. Again - I am not okay with that.
On Wednesday, I was at an event hosted by XL Soccer World. They are dedicated to kids' cancer and help CKc in so many ways. I met with Johnny's parents. You may recall that I attended little Johnny's funeral earlier this year. He was only 15 months old with the same disease as my son - stage 4 neuroblastoma. I watched Johnny be placed into the ground. Johnny didn't die of cancer, he died from the toxicity of the chemo. His body couldn't handle it and his organs failed and his body filled with fluids until his heart failed. When I visited him in the hospital, Johnny's mumma lay aside him and she said "They said there is nothing we can do. They said his organs will fail and he will die." Just typing these words kills me... but can you imagine hearing that? Look at your child and imagine hearing - "I'm sorry, there is nothing we can do."
I am so angry for Johnny!! It's not fair! It's not right and worse - it's not necessary. If kids' cancer treatments were designed for kids, Johnny could have had a long, beautiful life. Instead, he will never even get to have a first day of Pre-K, be married, have a job. As I type, I get more angered and saddened.
At the XL Soccer event I cuddled Johnny's mumma as she wept in my arms. I looked her in the eyes and I said "I promise you... I will spend every day of my life trying to make sure that our kids, everyone's kids, never endure what Johnny did." The reality is, we can change this for the next generation. For Johnny's siblings' kids. For Cannon's kids. For your kids' kids. But we need to fund research. The research is there, it just needs to be funded. The science exists, it just needs to be funded.
The good news with funding RESEARCH in clinical trials is that we will get there. That's a promise. I am devoted to this cause. When a Scottish lassy commits, she commits big - Go Big or Go Home!!
Speaking of funding research...
Planning for CKc's first Gold Gala is in full swing. If you're interested in attending, please personal message me. The event will be invite only - this will keep cost with invites down meaning more money to research. I'm a penny pincher when it comes to our funds.
A sunset butterfly release will take place to honor those fighting and to respect those who are angels in heaven like dear sweet Johnny and my best buddy Oscar. I love you Oscar. As I plan our next trip in November to Michigan for Cannon's scans, I am saddened I won't cuddle you. Oscar gained his angel wings at age 5. He was Cannon's first friend. In Oscar's in memory, we funded $100,000 towards a brain cancer research clinical trial. The Gala will fund two more trials. One for rhabdomyosarcoma, a muscle/tissue cancer, for my buddy and hero Trevor who is fighting to beat relapsed cancer at age 7. And another trial for neuroblastoma in honor of my best girl Ava who is battling relapsed neuroblastoma. The chance of survival with relapsed cancer ranges from 2-20 percent. I know both of these kids will win their battles - but they need more clinical trials. Trevor's mum has battled for treatments for him. None are guaranteed to work and the trials come with horrendous side effects that no human should endure, let alone our babies.
So to fund these trials, we are planning the Gala of all gala's. Go big or go home.
The night will include fireworks and a Scottish flair of whiskies and bagpipes at a lakeside venue to be revealed soon. You know how I love surprises!
Please donate to research... if not with CKc, please donate to Alex's Lemonade Stand, St. Baldrick's, CureSearch, NMTRC or Band of Parents. All dedicated solely to research and my favorite organizations.
We will post my TV interviews within the next few days when they send us the digital files. We are grateful for the exposure for kids' cancer.
Thank you for taking time to read my rant. Kids' cancer doesn't need to exist - let's Cannonball Kids' cancer.
I continue to be
Thankful For The Fight
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