The Cody Cohen Family
"Cody was a starting Varsity Outside Linebacker in the fall of 2012. He had an awesome season full of tackles and sacks, but took himself out of the last game of his high school career - a playoff game - because he was feeling so awful he could barely stand up. We figured he was exhausted; working + school + varsity football is a lot! Plus, he had almost constant tonsillitis. We scheduled a tonsillectomy for that winter break. One thing led to another surrounding the surgery, and a CBC revealed a shockingly low platelet count. The surgeon recommended getting to a Hem/Onc doc ASAP. U of I Children's got us in quickly, and on January 18, 2013, we had a diagnosis from Dr. O'Dorisio: not only did Cody have leukemia, he had an exceedingly rare form – Myelodysplastic Syndrome. MDS is so rare in adolescents (it's a disease usually found in adults over age 70) that there is not a treatment protocol for it. The docs at U of I Children's Hospital drew up a plan and sent us off to Minnesota for a second opinion. The U of M team agreed with the plan, and chemo was to start on 2/25/2013 – two days after Cody's 18th birthday – followed by a bone marrow transplant.
We soon began to learn the hard way that Cody was destined for a long and arduous journey of severe complications and rare side effects. We heard things like, "I haven't seen mouth sores this bad in the 25 years I've been practicing," and "Once again, Cody's got the rarest of the rare." There were days when we watched a different specialist walk through Cody's door every 15 or 20 minutes, all trying to work together to keep Cody alive.
Cody was FINALLY ready for bone marrow transplant in July of 2013, months later than originally planned, but that first transplant FAILED! The transplanted cells never engrafted themselves into Cody's body, so he was left with zero bone marrow, zero immune system, zero ability to make his own blood until we could figure out what to do next. 75 days later, a miracle arrived in the form of Cody's then-anonymous bone marrow donor, Ormarie Vazquez-Silva. Cody's second transplant (cells from Ormarie) engrafted QUICKLY, and Cody tied a record for shortest # of days between transplant and discharge. We were flying high! Life could finally begin again outside of the hospital!
Buuuut no. Unfortunately, Cody had to go back into the hospital just 48 hours later with Graft vs Host Disease (the transplanted cells were attacking Cody's body), and ended up spending another grueling 6 weeks or so in Room 89 in the old hospital's Bone Marrow Transplant Unit (the new children's hospital was under construction back then!).
All told, Cody ended up spending 226 days in the hospital in 2013! He missed the last half of his senior year, missed senior prom, and was unable to head off to college with his friends. If it weren't for the Dance Marathon volunteers, he may well have fallen into a depression. The DMers visited his room often (no group activities for him due to his lack of immune system), talking, joking, and playing lots and lots of games, and we truly believe that played a huge part in Cody's amazing ability to stay positive through that unbelievable year.
Since then, Cody has had ongoing problems with severe chronic Graft vs Host Disease. In 2016, his cGvHD was so severe that the docs at U of I urged us to get a 2nd opinion of their treatment plan; they had never seen GvHD that extensive. We flew to the two coasts - Seattle Cancer Care Alliance and the National Institutes of Health in DC - and the GvHD experts agreed that the U of I docs were on the right track. Tweaks were made and meds were added, and Cody started to slowly be able to stand up, walk, and breathe again. Cody is still (7 years after diagnosis) receiving treatment for his cGvHD, but is greatly improved. In 2016, we were afraid we may lose him. But in 2019, now-24-year-old Cody was doing so much better that he was able to re-start working part time! He has remained positive and upbeat throughout this horrendous journey, and is starting to make plans for his future.
This has been a rough 7 years to say the least, but thankfully our family has become closer as a result. The love of Cody's parents, sisters, and nephew Wyatt have remained constant, and Dance Marathon has been there for our family through it all. The DM Hospital Volunteers, prescription copay assistance, gas cards, family activities, and the Capturing Hopes photos at the Big Event have been enormously uplifting and helpful to our journey as a family. The generosity, compassion, empathy, and loyalty of the Dance Marathon dancers impresses us constantly and we will forever be DM supporters!"
-Laura Cohen, Cody's Mom