Today we ride for Jesse, a smart, big hearted and well loved 12 year old boy who was diagnosed with a cancer called Natural Killer (NK) Cell Lymphoma. He underwent surgery in June 2008 and removed the entire tumor. In September, the cancer had returned and that was when the nightmare began. The chemotherapy was started for the next 5 months and then on March he would have a bone marrow transplant. The transplant went well and after a year of in and out of the hospital he was finally home recovering and beginning his life again. For those of you who don’t know, recovering from a BMT is like us bribing you near death to bring you back to life- we do it so we can kick the cancers ass. For the next three and a half years he was fine, but started having massive nose bleeds and started looked pale and tired. Then he became neutropenic (blood counts went way below normal) because his bkarrow- the thing they replaced to save his life… it was failing him. You need your bone marrow to make red blood cells (carry oxygen), white blood cells (fight infection) and platelets (clog your blood). He had 75 blood transfusions and the doctors didn’t understand why. But after 20 days his organs started shutting down and he passed away at the age of 17😢.
He was a great rapper and recorded a CD that was auctioned off and raised $12,000 to go towards Make a Wish Foundeion. That was one of his wishes – when he becomes a famous rapper his proceeds go towards children’s cancer so that kids didn’t have to go though what he did. What I did. Today I made the “old folks” listen to some rap for you buddy.
This ride is an instant gratitude lesson. I won’t lie, I was having a rough start but today? Today we got to go visit daycares and an elementary school at all of our rest stops. Now I’m in my element! I had the opportunity to talk to K-6 kids today during their assembly and let me remind you, their minds are raw and honest. Like “where do you sleep?, do you pull that big truck on your bikes? Why do you wear those clothes? No we don’t all wear helmets. Why do people get cancer?” And the list goes on. I told them how I was SO lucky to ride with 31 of my heros- my dad included.
The end of our day we stopped at Cancer Care Manitoba. I have been here before and their centre is top notch! Here I met Alex, he’s 17, and a ALL survivor like me. He’s super involved with their teen leadership program and has already started his giving back as he wants to join the army.
I also met Tiffany. Tiffany is a young mom (she can’t be much older then me) and when Emma was 4 months old she was diagnosed with a rare form of ALL. They had to advocate SO hard to get a blood test because she was bruising so bad… 3/4 of an hour after that blood test they met Dr. Doyle, a peids oncologist and they were given that same news my mom and dad were 23 years ago- your child has cancer. Chemo. ICU stays. Lots of tests. And in the blink of an eye this sweet, innocent baby was very very sick. Tiffany told me they almost lost her a few times. She also told me that after her 1sr birthday in August that they gave her 6 months to live… yeah this little angel could die. But I’m sending my love big time kiddo! She is going to start a new novel chemotherapy called blinatumomab. Cost? When blinatumomab was approved, Amgen announced that the price for the drug would be $178,000 per year, which made it the most expensive cancer drug on the market- Kelly and Steve two of our riders have raised $98,000… that’s nkt enough to cover one treatment for a babe like Emma. There is this thing called compassionate coverage… why is it that we place a cost on saving many year of life. After this treatment Emma will need and cord blood transplant- a complete stranger or her own cord blood I’m not sure… but nonetheless less a hero.
In all of this I learned that Tiffany was going to school to become an RN like me. I also learned that tomorrow she finds out if she still has a job…
We are rooting for you sweet girl ❤️
Tonight I sat and chatted with Michelle a fellow rider. She told me she has been following my journey since 2013.. I didn’t know her until last week. I guess the point is you never know who you’re inspiring. Who’s watching. Who’s cheering you on from the sidelines… that is until they get on the playing field of life.
Who did you inspire today?
What can you do? Donate https://nationalkidscancerride.com/ride/2017-national-riders/team-wheatley/
Become a donor for bone marrow- it’s easy just order a cheek swab kit https://blood.ca/en/stem-cell/onematch-information-new-registrants