I want take a moment and thank everyone who read my blogs this week and commented and most of all who thought of Cannon and/or prayed for him. I have done those and do those for other kids and I know it takes emotion, energy and effort and so it is never the fault of anyone for not wanting to be part of this journey. That's from the bottom of my heart - pure gratitude! This blog began as a way to keep my UK family updated on our baby Cannonball. It grew beyond my understanding and has helped raise $100k in one year for research. You all reading this are all a part of that and you should pat yourselves on the back! It's not easy! I am proud to know many of you who follow Cannon and pray for him and my family! Thank YOU!!!!!
As I type this I'm laying in a park aside the hospital looking at the sky, sipping coffee and praying so hard! Oh how I despise the saying "Thy will be done, not mine'", because then I am reminded that my GOD of my understanding does not want Cannon sick and does not want him in pain.
Today again, it took four of us to access his port. Now that Cannon is talking since his hearing aids, the words from his mouth pained me! "Ow, Mumma, hurt Mumma!!! Hurt Mumma!" while tears rolled down his face!! Most of you know I have never cried in front of Cannon! I am strong for him. "Keep your tears for your pillow", I say. Please know I don't think tears are a sign of weakness but I do believe that my son doesn't need me crying as he cries! He needs to know I'm strong and things are and WILL be fine!! That's my opinion - it's not for everyone and that's okay. I always say whatever works! It's all about survival at this point!
As I knew it would be, the day in Michigan is the best since we arrived! Sunny, clear blue skies and a lovely breeze and 75! Glorious!! I am such an outdoors person!! I love being outside and so do my kids! So being outside in this weather is food for my tired soul. I already have clothes sitting out for Cannonball and me to go celebrate his NED tonight! I am so ready to hear the words!!!!
I said it and I will say it again! I would be dumbfounded if I am wrong!!
Tomorrow we fly home and I am so thankful my husband has decided to come home for 24 hours from his trial and see Cannonball and oh so selfishly, I need a hubby hug!!!!
I feel like as I sit here all OUR choices for Cannon are flashing before me! We had to make many!!! I wonder were they right? I recall one doctor saying to me "Whatever you do, don't let anyone persuade you to NOT radiate that left leg." Of course the opinions were half and half for Cannon - half said radiate the leg, half said don't. We did NOT radiate his leg! For many nights of agonizing over it we decided not to! We radiated a huge stomach, spine and hip area and Cannon will have to deal with the impact of that his whole life! If we had radiated, one of our doctors said Cannon's life would change forever and he would most likely not walk again and would need assistance. I wasn't able to take that away from him. But now?? He is limping on that very leg. Did we make a mistake? I can't say I haven't thought about that comment these past 12 days!
Cannon also has a gene called N-MYC amplified. Doctors are conflicted on the impact of this gene but when Cannon was diagnosed, one doctor said it can be the nail in the coffin! Another said it has no impact if you're going to relapse you're going to relapse! We were told two years ago there is no cure for relapse! That you are never considered cancer-free again. I don't believe that's true today. I believe doctors believe they can cure it! And that is my prayer for Prestun and Ava who fight the beast again now!
We were also told that neuroblastoma is the number one killer of kids with cancer! I believe brain cancer may be now! But honestly, who cares? This disease takes kids by leukemia sarcomas, brain cancer!! Cancer is the number one killer by disease! Period! End of story!! It's not acceptable!! I don't accept it! I won't! I swear and hold me to it- I will never stop fighting!!! Never.
In September, our CEO Ashley VanDerMark and I will head to Washington, DC to try and persuade the White House to give our kids more than 4 percent of funding from the cancer budget!! NIH and NCI need to start listening!! This has gone on too long! Too many lost, too many diagnosed!!! I am now writing a devotional motivational book to raise more money for our next project! I will do whatever we need to!
I have to say that Cannon talking has been wonderful at times during this trip! He asked to call his dad like 100 times and his brothers! "Brothers home, Mumma, Arran Gray, Mumma." It's incredible and makes me so happy! He can tell me he wants to eat! Drink! His most used words this trip are "Baby walk outside, Mum". No joke, he has taken his baby in the stroller to every appointment, it's so cute! He wants to walk her outside all the time. We have walked around half of Michigan with that stroller!
Well, I'm off to eat a cookie. I am the worst stress eater ever!!! Cookies at this hospital are like the size of my head and amazeballs!!
Again... thank you, thank you, thank you for coming on this insane, crazy, emotional journey with my family, but mostly with our Cannonball!!
You are OUR hero, Cannonball. With that million dollar smile you need to stay around and be the good man I know YOU will be! The world needs more men like you!
I continue to be
Thankful For The Fight
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Written by Mumma-Bear
Cannonball Kids' cancer
Thankful For The Fight
1 year 30 days No Evidence of Disease
No Relapse Ever