High School Athlete Overcomes Rare Form of Cancer: Chronic Myeloid Leukemia

Our son Adam (far left in the photo above), a high school swimmer and childhood soccer player, began complaining of knee pain in January 2010. This is not unusual among swimmers (or soccer players for that matter) – they swim so many miles each day at practice, their joints frequently ache and Ibuprofen is doled out almost without thought.

We did due diligence, taking Adam to an orthopedic surgeon, who diagnosed overuse and tendinitis. With rest – the short swim offseason of March and April – it should improve, we were told.

Only it didn’t.

On May 10, 2010, we took Adam back to the orthopedic surgeon. To be cautious, he ordered an MRI of the knee. To all of our shock, the MRI revealed a likely diagnosis of leukemia.

Thus began a frantic round of medical visits to confirm a diagnosis. Adam was indeed diagnosed with leukemia at Cincinnati Children’s on May 13, 2010 – Chronic Myeloid Leukemia (CML) – which is VERY rare in children and adolescents. It is a ‘middle aged’ person’s leukemia. The knee pain was the direct result of an excess of white blood cells settling in Adam’s knee – 254,000 white blood cells to be exact.

We spent two days in the PICU to get Adam’s white blood cell count down as quickly as possible. That was followed by a two week+ inpatient stay for IV chemo and the introduction of an oral chemo that will stay with Adam for the foreseeable future.

CML research has benefited from vast funding that has resulted in several chemo drugs that get the illness under control, and keep it there. Thus CML is unlike most leukemias – no horrible treatment, BUT no cure.

That’s where the word “CHRONIC” comes in. It was accurately described to us as a situation where Adam would associate more with patients with arthritis, diabetes or similar chronic illnesses – than cancer patients. The plan was to get the CML under control, monitor it regularly, and move on with life. We knew it might not be that simple, certainly not emotionally, but that was the plan!

Adam’s two week stay at Cincinnati Children’s was amazing. We were a family in shock who were absolutely taken care of by the hospital’s staff. From the oncology team (led by Dr. Karen Burns and Dr. Maureen O’Brien) who explained the diagnosis and treatment directly to Adam and his teenage siblings, to the Child Life team who found an XBOX, laptop and PG13 movies for Adam to help pass the time, to the staff who helped Adam stay on top of his AP course homework, to the nursing staff who allowed an excess of teenagers, adults and swim coaches to visit Adam’s room at the end of every school day, to the birthday party nurses threw for his 17th birthday just three days after diagnosis, to the financial aid specialists who explained our insurance and medication options. We felt wrapped in a safe cocoon in the midst of our worry.

After the CML was under control, Adam went home and went on with life, with frequent visits to Cincinnati Children’s for blood work and bone marrow aspirants to ensure the medication was doing its job.

An unrelated meningitis diagnosis and kidney injury in August 2012 found us back in the hospital for another scary week’s stay, and the oncology, infectious disease and nephrology teams worked seamlessly together to bring Adam back to good health again.

Our clinic visits have become incredibly informative for Adam because the staff  have taken time to get to know him and his aspirations in life. He has enjoyed college advice, career tips, guidance on inoculations needed for study abroad opportunities, and information on obtaining internships from the staff. They are truly his second family.

 

Adam is now in his third year at The Ohio State University and he recently returned from a six week internship in Costa Rica, studying whales, dolphins,sea turtles and the toucan with which he is pictured above. Adam is majoring in Zoology and Spanish, with an eye toward becoming a professor and conducting animal field/lab research. Thanks to the continued care Adam receives from Cincinnati Children’s, the future looks bright!

 

Nancy Young

About the Author: Nancy Young

Nancy is a Cincinnati native, and the Young family are 14 year residents of West Chester. Nancy has worked in Access Services at Cincinnati Children's Mason facility for 18 months, a part time customer service position she juggles with a second career as a freelance writer/marketing professional. The family includes Alan, a residential real estate specialist, Jordan, 22, a recent Finance graduate from the University of Kentucky, Adam, 20, a junior majoring in Zoology/Spanish at Ohio State, and Gabrielle, 18, a freshman Engineering student at Ohio State.

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Comments

  1. Anne Keefe September 11, 13:36
    Thank you for passing on such an encouraging story. Adam clearly has not let this slow him down. Praise the Lord for his good health and for Children's Hospital in Cincinnati.
  2. Amy Fite February 23, 00:42
    I love hearing story's of how strong a child is fighting through any cancer. I am a cancer survivor myself. I had Leukemia also I was 15 and was diagnosis with the kind people 25yrs and older get AML Leukemia. It was found by mistake I was suppost to get my tonsils removed and when I had a pre-op test done they found something wrong with my blood. Further test were done and I had to go to children's hospital in Cincinnati to meet with a doctor that specializes in it. Just so happens that doc was in. And it was confirmed I had Leukemia. I also had a knot in one of my breast that went from a size of a pea to a size of a golf ball in a week and a half. And it was the leukemia built up in my breast. The docs wanted me to immediately be admitted at children's hospital. Being only 15 years old at the time and never had an IV or spent a night in the hospital ever in my life I was scared for my life. The doctors gave me a 50/50 chance of making it through it. They didn't know how to treat me cause it was very rare someone at 15yrs old have a type of cancer people get from age 25 and up. They asked to treat me with experimental cemo that might help. I agreed and so did my family. I was admitted into children's hospital cancer ward on Dec. 15, 1993 and stayed there for 6 months. I did 4 rounds of cemo and some radiation on my breast. And it sure was a battle for me. The docs said if I would of wait a week later from when they found my cancer I would of been dead. Let me say something....GOD IS GOOD. He made me have problems with my tonsils for them to find my cancer. Which saved my life. A short view on my 6 month stay in the hospital...the cemo messed with my Gaul bladder and it almost busted but they removed my Gaul bladder just in the nic of time while being removed they did a lazor surgery to remove it and accidentally nicked my liver and had to cut my stomach to stop the bleeding. And guess what I'm still alive! Then right after my 4th cycle of IV CEMO the docs said I was going to go home maybe less then a week for now...guess what I was eating pizza and that's the last I remember I went into a coma for a week. I had IV's everywhere in my body. My brain swelled so big. The doctors called my family in to say goodbye to me the doctors gave me just 1% chance of making it. Guess what...GOD IS GOOD!!! I came through it :) i don't remember anything for a whole week but waking up for like 10 secs and started pulling out IV's then went right back out. God is good for sure. I had many churches, families,friends, and strangers praying for me the whole 6 months. They use to call me the miracle child. I seen a lot of children come and go for 6 months there were sad ones and happy ones. I remember a mother losing her baby and the baby was maybe 9 months- 1 years old so little. She rocked her dead baby for hours and would not let the doctors take her baby from her so very sad. And then there was a family that had a little girl that had cancer maybe 5-7yrs old and the doctors and nurses asked me to talk to her family about getting a central line put in to get her cemo instead of a IV in her had that was hurting and burning her hand after awhile. Me and my mom talked to the parents and told them how it's not painful to have a c-line in. So they decided to try it with there daughter. The next day the little girl was walking the halls with her c-line in and holding her parents hand smiling and said thank you to me she said now I can color pictures cause me hand isn't hurting no more. That was a highlight of my visit with children's hospital. God put me there to help that little girl and her family :) here's another for ya while at my stay I would pray every night and tried to stay positive I had a smile on my face everyday even tho I was scared out of my mind. One night when I was praying god talked to me and no I wasn't hallucinating not that day anyways. I talked to god and he had asked me if I was ready to come with him..I told him no I didn't want to go I wasn't ready to go. I told god I wanted to experience things in life like having kids get married those kind of things god said ok and poof that's it he never talked to me after that. I don't know if people believed me when I told them when it happened but my mom did and that's what mattered to me. My mom stayed with me for 6 months. She was my rock. The doctors also told me I wouldn't be able to probably have kids..guess what I have 5 healthy kids now. God is good. I could go on and on. But I'm not going to. The important thing I'm trying to say I guess is I'm now 37 yrs old cancer free and it's thanks to god...the doctors ...the nurses.. Family & friends......the support from others...and a positive attitude with faith. That's why I'm still here to tell my story. This made me stronger a much stronger person and my mom to she wouldn't give up on me at all when doctors told her to say her goodbyes my mom said nope I'm not doing it god will get her through it she's not going to die. Guess what yep she was right a miracle happened I came right out of coma like it never happened. Amazing huh yes it is. God has a plan for me it wasn't my time. I believe god put me here to help people. And he does send people to cross my path that I try to help and save there lives. I would love to talk to people on a regular basis at children's hospital that r dealing with cancer but unfortunitly I can't I am home with my kids for now. But for now I will settle listening to other cancer story's and how hard young people fight. It warms my heart to hear u r strong and u didn't let it get u down. God bless u and your family Adam.