Disclosure: do not watch if you are easily offended or do not want to see the reality of cancer. This video is Cannon entering the oncology clinic and having his port accessed.
This child. My child. He is almost one year no evidence of disease (NED) in his body yet he continues on chemotherapy daily with monthly pokes and three month scans. The misery was not over when he was declared NED. Why? Because there is a 50/50 chance his cancer will come back despite chemo, a 13 hour tumor resection surgery, radiation, stem cell transplant and 6 months of immunotherapy in ICU. Our dear friend Ava relapsed after two years NED. Why? These treatments aren't designed for kids! They are NOT! There are not enough research dollars to change it. I look at Facebook today asking me for money for something and I think - "What would happen if Facebook would do that for kids' cancer?"
I can tell you that 250 sets of parents would NOT be burying their kids today.
We need change!!!
Perhaps these videos will help make that change?
Perhaps they won't.
But I CANNOT sit back and watch this misery any longer and not feel proactive.
Cannon and I were in the clinic back room from 8am this morning.
Cannon is potty trained now so helped with his urine sample. No more sticking bags around his pee pee and collecting urine. The joys of life - very thankful for that. For two years we had to bag him and it would pull on his private parts and hurt him so much he would scream when it went on and scream when it went off, so this is a relief as his Mumma Bear and a huge relief for him!
Due to issues with Cannon's chemo there is now a new company producing the drug which basically means we are starting it all over again. So today we will be in clinic from 8am for at least 8 hours doing blood tests every few hours. We're on the oncology floor with around 15 other patients with curtains as our only dividers. It's called the infusion center. It's so sad... newborns, teenagers and everyone in between - all in the same boat fighting a beast called cancer.
Child life tries with Cannon, they really do, but he ain't no people pleaser and just ignores them. :((( I try to urge him but he is stubborn like his dad. ;)
Please do not mistake me. I am Thankful For The Fight!!! I am!!! Cannon has options!! Oscar was sent home with NO OPTIONS and died at age 5. So I know the other side to the best extent I can... but two years in and this Mumma Bear is exhausted.
Yesterday, within being in Michigan for 30 minutes, I met a mumma bear and her 6 year old. She was here from Virginia for a trial. Her daughter has DIPG. That is terminal in the kids' cancer world. She said to me "We would do anything at this point." Generally kids with DIPG have 9 months to 2 years to live. Why? Because the treatment is 50 years old and is NOT designed for kids. That's why!
Then I spent hours and hours with Amanda, Oscar's mum. Amanda recently buried Oscar, aged 5. Why? He had cancer once and beat it. It came back. He beat it again. It came back. Why was it coming back? Why? The treatment is NOT designed for children. Yes, that's what I said! NOT FOR KIDS.
CHILDREN ARE NOT SMALL ADULTS.
It's not okay we treat them like they are.
Influential scientists have said that if we did more research on pediatric cancer we would understand the cancer better and be able to treat adults better. The same doesn't apply vice versa. In other words, researching adult cancers doesn't help kids. Generally speaking!!!
Let's make a change.
This is something that can be changed in OUR lifetime!!!
Please donate to pediatric cancer. If not to Cannonball Kids' cancer, to another foundation that does research ONLY or primarily research. The two I vetted and met with their founders are Alex's Lemonade Stand and CureSearch. Both are dedicated to pediatric cancer research!
I am Thankful For the Fight.
I just want these kids to do their treatment, beat cancer one time and be done.
Not relapse after release.
Fight after fight.
One fight is quite sufficient.
Scrap that: I want to cure cancer but one step at a time.
Step one: Let's get better treatments for these kids. Ones that don't mean when they are NED they still need to be on chemo for two years, or ones that don't make them relapse or have hearing loss or render them unable to father children. Let's change that!!!!
In June, CKc will present our first check for $100,000 to a pediatric brain cancer project that researches immunotherapy. We will be one year old on June 10th. I'm very proud of year one but I know that this is only our warm-up round.
Our team is not going anywhere.
As I finished up this post I received a voicemail: a family reaching out to me with stage 4 neuroblastoma. Every day, MORE and MORE kids are being diagnosed. The numbers are rising, not falling. Help us change that. Help us Cannonball Kids' cancer.
Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
338 Days No Evidence of Disease
No Relapse Ever