Story of Survival - Carolyn 20 Years Later

Carolyn Koncal - 20 Year A.L.L Survivor

Photo ©Diane Moore.

I vividly remember meeting Carolyn, when Colleen was first diagnosed with cancer. Like many newly diagnosed children she was immediately admitted into the hospital so she could have a surgical procedure to place her port-a-cath in her chest. Needless to say, this was a terrifying prospect for Colleen who had not had surgery previously. Enter Carolyn, a Child Life Specialist, holding a sock monkey.

Carolyn helped Colleen "operate" on the sock monkey to place the port-a-cath in the sock monkey's chest while explaining the procedure in kid friendly terms and talking to Colleen about her fears. When they were done, Carolyn took Colleen to the radiology department to x-ray the monkey. While looking at the film, she gently said "hey, while we are here, do you want to get a picture of the inside of your chest too?" This cleverly eliminated the frightening build-up to the necessary pre-operative chest x-ray and helped make the whole port-a-cath procedure a lot less scary for Colleen. 

Carolyn turned out to be one of our favorite friends, visiting Colleen daily during hospital stays. Although Carolyn has moved many states away, I cherish the friendship we have and the lasting impression that she had on our lives. She is a stellar example of a Child Life Specialist and how children with cancer should be cared for during their treatment.

She is a big part of the reason why I am such a strong advocate to ensure that funding is in place to ensure that Child Life Specialists resources and programs are in place for all children with cancer and their families. During Colleen's treatment, I realized that not all children's hospitals have the funding to provide resources and programs to the extent that Carolyn helped Colleen during the early days of her treatment.

After our friendship developed, I learned that Carolyn was a childhood cancer survivor herself. Perhaps that is what makes her so special. Perhaps that is how she knows exactly what these kids need to hear.

Although she has since moved away, we remain friends and I am honored to be able to celebrate with her as she pauses to reflect on her 20 year Cancerversary. Many people in the midst of their battle have a hard time seeing the other side. Perhaps this may help. Carolyn is an inspiration. 

January 25, 2014 ~ 20 year Cancerversary

20 years ago today, I was told I had Acute Lymphocytic Leukemia.  My first hospital stay lasted about 2 weeks.  I visited the outpatient clinic every Monday, Wednesday and Friday for six months to get chemotherapy or blood transfusions sometimes both.  I had countless spinal taps and bone marrow biopsies during the time.  At one point, the chemotherapy was so strong, they had to flush out both of my kidneys immediately to avoid kidney damage.  I had two weeks of radiation at Ohio State University.  I had pneumonia, which eventually sent me to the Intensive Care Unit for a week.  I missed the second half of 8th grade, started my freshman year of high school bald, and finally finished chemotherapy in April of my sophomore year of high school.  

It is hard to believe that I survived all of that, but then I thank God that I did.  Having cancer changed my life, gave me purpose and taught me valuable lessons. 

I discovered that life is precious, God works in mysterious ways, prayer works, everything happens for a reason.  It’s ok to play the cancer card.  Those who you expect to be by your side aren't and those who are, are the ones you least expect to be. 

It’s ok to plan your funeral when you are only 14 years old.  That bald is beautiful!  Survivor’s guilt eventually gets easier to deal with, the cancer community is bigger than you think. 

You become a survivor the minute you are diagnosed. What is normal changes, people will walk away from you and you have to let them no matter how much it hurts and to tell those you love that you love them.

I also learned an EKG and Echocardiogram should not take 2 hours, not all chemotherapy makes you sick and Zofran is an amazing drug for the chemotherapy that does.  Radiation and chemotherapy are a bad combination. 

Losing your hair is fun, it doesn't hurt when it comes out. That very few cancer patients think losing their hair is fun. 

If a nurse gives you Lasix make sure you're close to the bathroom and plan to spend an hour there.  If you have poor circulation warm your hand under hot water or wrap it in a warm washcloth before a finger stick. 

Patients have rights too.  If you ask a doctor if it will hurt, they will always tell you that you may feel pressure.  Some chemo makes your taste bud change causing everything to have a metallic taste.  Your sense of smell might become that of a bloodhound. 

Not everyone survives, you will make friends and a couple of months later you may be attending their funeral. 

It’s ok to hate cancer one minute and its ok to feel it was a blessing the next. 

Writing these reflections is my way of celebrating this day and my survival with all of you.  Please celebrate this milestone with me by celebrating my life, your life and the lives of those you love.  See the beauty the surrounds you and reflect on the lessons life has taught you and the gifts God has given you.

Carolyn Koncal

About Carolyn
Carolyn became a member of the cancer world in 1994, when she was diagnosed with Childhood Leukemia.  Carolyn was treated for 2½ years at Columbus Children’s Hospital (now Nationwide Children’s Hospital).  Since then, she has continued to be an advocate for various cancer organizations.  Her motto of “I don’t want others to go through what I went through” drives her. 

Carolyn received a Bachelor’s degree in Zoology from The Ohio State University.  To complete that degree she interned at the Dolphin Research Center in the Florida Keys and fell in love with using animals to therapeutically help people.  She returned to school and earned a Master’s degree in Recreational Therapy.  Carolyn went on to earn her Child Life Specialist certification in 2006.

Carolyn has worked as a Recreational Therapist/Child Life Specialist in adult and pediatric cancer oncology settings, and has provided services in both inpatient and outpatient settings.  She also has worked in Nursing Homes as a Recreational Therapy Director. 
In addition to working directly with patients as a Recreational Therapist/Child Life Specialist, Carolyn’s passion has led her to become involved with various cancer organizations.   She have successfully fundraised for the Leukemia & Lymphoma Society’s Team in Training program and been a shavee and guest blogger for the St. Baldrick’s Foundation. Through the I’m Too Young For This! Cancer Foundation (i2y), she partnered with local organizations to have i2y as a participant at their events, such as Hockey Fights Cancer Night with the Carolina Hurricanes, DrumStrong hosted by DrumsForCures, Inc. and Rock Against Cancer’s, 1st Annual Strike Out Childhood Cancer Night. 

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