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Survivor Spotlight: Kylie Clark

January 26, 2014
Times Leader

Kylie Clark

Age 22, Martins?Ferry

Rhabdomyosarcoma

Article Photos

Kylie with her uncle Jesse

My cancer story:

My name is Kylie Clark and I have survived cancer twice. I am 22 years old and currently doing well. I was diagnosed with rhabdomyosarcoma of the bladder (a rare childhood cancer) at the age of 17 months old. The only symptom I had was a fever that continued for five days. I became very irritable and continued crying on the fifth day. My parents took me to the emergency room and it took hours before the doctors saw the tumor in my vaginal area when they attempted to catheterize me. The doctors told my parents that they had never seen anyone push a tumor to where it was visible to the naked eye. My parents were told that it was like a 17 month old trying to have a baby and this is why I was in so much pain at the time. God helped me to push the tumor out so the doctors could see it and know that this was what was wrong with me since I was too young to tell them. I went to Ruby Memorial Hospital and over time I had one third of my bladder removed along with the tumor and started chemotherapy which lasted about one year. The doctors informed my parents that I had the possibility of developing leukemia within the first 5 years post-chemotherapy which did not occur. They were also told that my growth may be stunted and I could have learning disabilities. However, I grew at a normal rate, enjoyed a normal childhood, and graduated fifth in my high school class. God truly blessed me through those years.

In the fall of 2010, I started attending college at West Liberty University as a student athlete playing softball for the Hilltoppers. After completing my first semester and being approximately 6 weeks away from finishing my freshman year, my life took a dramatic turn for the worse. I was at my grandmother's funeral and told my mom that I had a horrible headache which continued to worsen as the hours went on. Along with the headache, my hands and arms were not reacting properly. I reached for a salt shaker and my hand went in another direction. I dropped my arm in my cousin's cake and had no idea. As the headache became more intense, I started vomiting. My parents rushed me to the emergency room. It was there that the doctor told us that I had a cerebral hemorrhage (brain bleed). I was sent to Ruby Memorial Hospital where I spent one week in the ICU. Upon discharge, it was still unclear why I had the hemorrhage. The doctors told us that we may never know what caused it. I spent the next six weeks in physical therapy to regain strength in my left arm and leg as a result of the hemorrhage. I then returned to Morgantown for a follow up MRI of the brain. The neurologist told my family the scan was negative and we may never know what caused the cerebral hemorrhage. Three days later, the neurologist called my mother at work stating the scan had been improperly read and I had a right parietal brain tumor. I followed up with a neurosurgeon who informed us that "it looked nasty." I was scheduled for brain surgery 10 days following my appointment to remove the tumor. The very next day I began having the same horrible headache as I had three months earlier. I walked to the bathroom then fell off the commode due to the loss of function in my left side.

I was taken to the hospital by ambulance and then within hours Life-Flighted to Ruby Memorial Hospital due to another severe cerebral hemorrhage. The doctors thought I was going to die in the helicopter but God was with me once again. I had an emergency craniotomy that night at midnight. I was told the tumor was malignant and after the results of the pathology, the doctor revealed the cancer was rhabdomyosarcoma. This was the same type I had 18 years earlier but this was a primary tumor not related to the bladder cancer. This type of cancer usually does not affect the brain and I was one of two in the nation known to have it.

This started my long journey to recovery. I was unable to walk and do the simple things in life that we take for granted such as pulling a piece of toilet paper off the roll. I spent one month in Peterson Rehabilitation Center learning to walk and develop my motor skills all over again. Once regaining my strength, I then started 6 weeks of radiation along with chemotherapy followed by another 8 months of chemotherapy. I finished my treatment in May 2012. I was able to return to college in the fall of 2012 after being off one and a half years. I continually strive daily to regain more strength in my left side. I no longer am able to play softball but I am currently involved with the West Liberty University Hilltoppers as a statistician for the softball team. I am currently on the dean's list majoring in Exercise Physiology. God has truly blessed me and I know he has bigger plans for me in the future.

Caregiver shout-out:

Throughout both of my journeys battling cancer I had a tremendous amount of support. First I have to thank God, without Him I would not be alive today. Second, my mom and dad, they have made me into the person I am and are still by my side. They paid the bills, took turns taking me to Pittsburgh, and helped me with everything. Both of my parents did more than you could imagine. Third, my brother also made a huge difference. Whenever my parents couldn't take me somewhere Shane would without hesitation. I will never forget after my surgery when my brother showed up to the hospital and he had a shaved spot in his hair just like mine. That meant the world to me. I cannot thank these three enough. Finally, I want to thank my church family, the rest of my family, and all of my friends for their prayers and support.

One lesson learned on your

cancer journey:

The biggest lesson I learned during my journey was to never take anything for granted. I have heard that statement hundreds of times and always brushed it off. I now know how true that actually is. Lifting heavy objects, running, and what I love most, softball are only a few of the things I can no longer do. Do not get me wrong I am beyond thankful to be alive, but I took all the little things I did and loved for granted. Make sure you never do.

Message to newly diagnosed and patients in treatment:

I would like to tell you a few things. It is okay to feel weak and not want to do anything. This is going to be one of the toughest times in your life, but you will make it! You have to stay as positive as possible. Take your journey one day at a time. Lean on your family and friends that is what they are there for. Keep your faith and pray daily. God is always good to those who believe.

Kylie is a member of Riders for the?Cure relay team and will participate in Relay For Life of Belmont County, which will take place on June 13-14 at St. Clairsville Stadium.

If you are a survivor and/or you would like to get involved in Relay For Life, please visit www.relayforlife.org/belmontcounty or call 888-227-6446 x3206.

 
 

 

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