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Inspirational Stories

Ron

Philadelphia positive B-cell acute lymphoblastic leukemia (Ph-positive ALL)

This started 11 years ago when my mom was first diagnosed with lymphoma. I wanted to do more and saw the purple team always out running events I was entered into. I wanted to join and did in 2010. I have run in countless events over the years with Team In Training (TNT). Then my mom passed in May of 2017 while I was training for the Walt Disney World event. I was crushed and continued to run in her honor. My mom was supposed to be at the finish line at my 2018 Walt Disney World Marathon Weekend, and it did not happen.

After running the marathon, I noticed something was not right. I thought it was my yearly allergies acting up. I went to the doctor’s office, and she pulled extra labs. The next day, January 23, 2018, I was diagnosed with Philadelphia positive B-cell acute lymphoblastic leukemia (Ph-positive ALL). I was immediately sent to the ER for a bone marrow biopsy to confirm it. I was sent to Moffitt Cancer Center two weeks later with the help of The Leukemia & Lymphoma Society (LLS) to get me in earlier. Originally, it was eight weeks to get me in. When I got into Moffitt, they told me my options, take chemo or be prepared to pass in a couple of weeks. With chemo, I had a 40% chance of surviving the treatment My words were, "Will I be ready to run Dopey in January 2019 if I do the chemo?" The doctor said, “I see no reason why you could not.” So, I started my rounds of hyper-CVAD and was done by April and back to work in May. I was in remission.

I started training in August with the TNT team for my 2019 Walt Disney World Dopey Race. It's 48.6 miles over four days. A 5K, 10K, half marathon, and a marathon. It was a slow process to get some kind of endurance to keep running. Then during one of my visits, my counts were off. I was scheduled for a bone marrow biopsy the next day. This was in December, two weeks before my race. It was confirmed my cancer had returned, and I needed treatment. I thought I had beat it, and it was a huge disappointment that I would have to go through chemo again, granted I was still taking chemo pills. I told them I was putting off treatment until I ran this race, with or without their approval. The doctor granted me my request. After that, Run Disney was asking for people with incredible stories. I submitted mine about running Dopey while still going through chemo. I was chosen for an interview to be featured for Run Disney. Then I was chosen by LLS to speak at the dinner for the race. I felt like a celebrity that week. I had news teams interviewing me before the marathon, and Run Disney was going to follow me through my race with my teammates who stuck with me through my journey. The marathon was amazing and tearful. As we entered Epcot, which is a mile from the finish, tears started flowing, knowing that I would finish the race. We crossed that finish line, all holding hands. I was met by the Disney news crew, all the TNT friends, and family who watched me finish. My race was over, and chemo was going to start two days later.

I reported to Moffitt two days later with my medals to start my next treatment which was BLINCYTO®, supposedly a much less invasive chemo, again, given 40% of survival. Again, I asked if I would be ready for Dopey 2020. Again, he said no problem, and my nurse practitioner said she would join me. This round did not go well with me. When I arrived, they said my counts were normal, but to be safe, we needed to go forward with the BLINCYTO®. It was a rough journey that put me in the hospital for 60 days. After the treatment, they said I was in deep molecular remission now, the best news I could hear after having a hard time with the treatments, knowing that it was a success.

I trained for the next couple of months and ran Dopey 2020 and finished with my NP and four other teammates by my side. I will be running my 10th Dopey Challenge this January with TNT. I can't wait to see the nationwide team in Orlando.

LLS has been there before cancer, during cancer, and now after. It’s a great family to be part of. I'm now three years in deep molecular remission, and my doctor says he thinks I'm cured but can't say that until year five. I go off my chemo pills in January of 2022, and hopefully, my cancer journey will be over. I always say I owe my life to primary care, Moffitt, and LLS that helps find better treatments or cures and funds these amazing new treatments. Thanks for reading my story as my next chapter in life starts.

Ron