We are so proud to have Connor McGoff as our Honored Hero in 2019! Here’s a letter from Connor and an update to his recent CAR-T cell immunotherapy! We are so inspired by Connor and will be riding in his honor all season!
“In May 2011, I was diagnosed with leukemia when I was only 1.5 years old. I had to do 3 years and 3 months of chemo. On September 1, 2014, I took my last dose of chemo and we had a big party with my family and friends. Even though I was done with chemo, I still had to see my doctor and nurses to make sure my blood stayed healthy. Finger pokes are the worst! I had good check-ups for 2.5 years and then my leukemia came back in February 2017. I didn’t even feel sick but the doctors said I had to fight the bad guys in my blood and start taking chemo again. This second time the chemo was a lot harder – it made me really sick and I had to stay in the hospital a lot. I had a bone marrow transplant on August 1, 2017. My big sister, Chloe, was my bone marrow donor and she gave me some of her healthy cells to make me better. Even though I was getting better, I couldn’t be around a lot of people or go to public places because of germs. So, I had to spend most of my time at home this past year. I couldn’t go to school and see my friends so I had a homeschool teacher. He helped me to stay on track with my school work. Sometimes I get to FaceTime with my class – that’s really fun!
I just had my one year post-transplant bone marrow biopsy, and my doctors told us that my leukemia is back for the third time. I was really sad when I found out and so were my parents and sister. I’ll be at Children’s Hospital Colorado getting chemo for a few months or so before I can get CAR-T cell immunotherapy. CAR-T is when my T cells are taken out of my body and reengineered to turn into millions of super-duper cancer fighting cells and put back into my body to kill the leukemia. LLS has been funding this treatment for 20 years and it was recently FDA approved last year. I will be the 6th person at Children’s Hospital Colorado to receive CAR-T, and my family is so happy that this treatment is available to kids like me.
This year I will be the honored hero for Team Survivor; I’m glad that our cyclists can raise money to help other kids with cancer (and grown-ups too)! The money you raise go towards treatments like CAR-T.
Thank you for bringing us all closer to living in a world without blood cancers!”
Connor
UPDATE – Connor received his CAR-T cells Wednesday afternoon (10/17)! His bone marrow result came back and the percentage of blasts was higher than two weeks ago – up to 16%. Connor’s leukemia is proving to be pretty aggressive at this point and likely chemo-resistant, so having the CAR-T option available is a very good thing. However, the higher the active leukemia, the higher the chances for side effects post infusion (cytokine release syndrome or nervous system issues), but his team will be watching him closely over the next few weeks and that’s why we’ll remain inpatient. We are excited, anxious, and praying for minimal side effects. These superhero cells need to work so that little man can finally kick cancer to the curb! #ConnorMcStrong #CART #BeatTheBadGuys
