Inspirational Stories

I was diagnosed with acute lymphocytic leukemia (ALL) at the age of two in 1981. I was sent to Riley Hospital for Children for assessment and to create a treatment plan.  At the time of my diagnosis, my mom was a single mother of two young daughters. My father passed away from Ewing sarcoma in April 1979. I was eight months old, and my sister was four when he passed.

We lived in Marion, Indiana, which was about an hour and a half drive to Riley in Indianapolis. It was decided that I would be treated with radiation and chemotherapy. At the time of my treatment, I was given free radical radiation to my head and my spine. I was also put on prednisone which gave me the common chubby cheeks of leukemia patients. I did lose my curly hair due to the treatments. I had a wig to wear, but it was "itchy," so I didn’t wear it. I wore bonnets instead. I don't remember being sad and sick. I know there were times when I did not feel good, and I needed to rest.

I also just remember being a child. I had a different childhood because I had cancer. I am grateful that my mom and family still took pictures and that I am smiling in most of them, even with a bald head.

I spent a lot of time in a hospital to get treatments and to keep myself safe from outside factors that could be dangerous if I were to be exposed to them.

When I was four, my mom remarried, and I gained an amazing dad. He adopted me and my sister. He brought with him a son/brother that was older than me and a daughter/older sister into our family. He came with my mom to my treatments at Riley. He was a comforting and peaceful influence. He brought humor, too, and made me smile. He had nicknames for me like "baldy beaner" and "chipmunk cheeks."

I liked the waiting lobby at Riley because they had carousel horses and a fountain to throw pennies in. I remember that Riley had red wagons, and my mom would take me and my IV on walks through the hallways. I also remember white coats and kind smiles. I liked the "balloons" that the medical staff made out of gloves for me. The fingers were the hair, and they would draw a smiley face with a black marker.

I sat on my mom's lap for my labs to be drawn. I remember laying on tables with speakers for my treatments. I also remember silver trays with big needles on them. I had to turn to the wall and curl up in a ball with my head on a little black pillow.

I loved cheeseburgers, and during my chemo, I would cry and beg for them at night when McDonald's was closed, and my mom couldn't get them.

I was able to get my medical records from Riley in 2021. Some of the notes from doctors say that I was "fussy" or that I was "completely uncooperative" during radiation treatments. I think that sums up the response from a two-year-old.

In the 80s, they did not sedate children for treatments. They did not have ports. I was stuck with needles more times than I can count. I have a fear of needles that remains today. My sister was able to come to visit me at Riley sometimes. We met other children that were on the unit for treatment. Having family around is important and uplifting. There were times when I was hospitalized, and my older sister had to stay in Marion with our pastor's family.

This disease caused a lot of heartache and times of separation for my mom and my sister. The loss of my father to cancer was also very difficult for my mom and increased her concern for me. She did have a great support system of friends and family in place before my diagnosis, and these people were definitely needed during my battle with leukemia.

I was in remission at the age of five in 1985. I was a Riley Kid from 1981 to 1985. I went on to attend Kindergarten. I graduated from high school as well. I went to college at Indiana Wesleyan University and achieved a BS in Psychology. I also earned a certification in Child Development through Ivy Tech. I worked in the fields of early childhood, professional nannying, and case management. I also held various jobs in the school system.

I did not experience any relapses in leukemia or any other cancer diagnoses. I was always nervous when a blood draw was required when I was feeling ill, or had a check-up. It was good to get "normal" results.

In October 2019, at the age of 41, during a visit to the ER, I was diagnosed with a benign meningioma/brain tumor. It was decided by the Neurological Team at IU Methodist that this tumor was the result of the radiation treatment that I received for childhood leukemia. I was told that I would not be leaving the hospital and that I would need to have surgery. On October 22, 2019, I had a craniotomy to remove a large tumor from the right side of my brain in the parietal lobe. When I awoke from this surgery, I could not move the left side of my body. I also had damage to my central nervous system. I was placed in ICU for the first three days. I was then moved to another floor and was in the hospital for four or five more days. I was transported via ambulance to a rehabilitation hospital. I hadn't been outside in approximately 14 days. My main goal was to relearn to stand on my own and to walk. I was in a wheelchair that I did not know how to move. I was sad. I was tired, I was uncomfortable. I was frustrated. I had to relearn many activities of daily living. I went to therapy for four hours a day, six days a week. I stayed in rehab for one month.

I was able through much therapy, pure will, and stubborn strength, to learn how to stand and walk again. I can now take about 15 steps on my own. I have been diagnosed with "Foot Drop." I was fitted for and received an AFO or ankle foot orthotic brace for my left foot that I have to wear when I walk with shoes. I did not and have not regained the movement of my left foot, ankle, or toes.

It has been three years since my surgery, and I am now 44. I have been diagnosed as disabled. I live in an assisted living/independent living facility in Indianapolis. I still receive (as needed) occupational therapy, physical therapy, and speech therapy to assist with executive functions.

I have become much more independent in the last year. Although, I still require dressing tools to get ready each day. I am continuing to learn new skills and ways to complete everyday tasks. Through occupational therapy, I am improving my fine motor skills. I have tremors in my left arm and hand. It freezes at random times. There are days when I have low energy and feel weak or tired. I rest when I need to, that is important. I am learning to conserve my energy. I am also learning to adjust to environments that make me nervous.

My left leg freezes as well. I experience tremors in my left leg and foot too. I do not know when I will be frozen. It is like the game of "statue" I played as a kid. Through physical therapy, I have learned how to wait and then "march" in order to continue moving with my rollator.

I often struggle with anxiety, sadness, grief, and loss. I grieve what I have lost physically and socially. I miss the freedom that I had to be independent. I have decided not to let these feelings stop me. I do not want to stay in sadness. I have learned, though, that feeling each feeling is important.

I want to live the best life that I can. I want what I have experienced in life to help other children (or adults) that are facing leukemia or cancer diagnosis. I want them to know that you can be brave and scared at the same time. Acknowledge the fear, and keep going anyway.

Unfortunately, I experienced another loss in 2021. My mother became very ill in October 2021.  It was unexpected and happened within three weeks. COVID counts were high when she was placed in ICU. She was intubated and sedated. I was not able to touch her or be next to her. I had to talk to her and say goodbye" and "thank you" through a glass door.

I am grateful that my siblings included me and took the time to come pick me up. Much of my family was together in the waiting room when she passed. I miss her so much! I want to keep telling my story for her because she loved me and always supported me. I am glad that she was able to see some of my progress since my craniotomy. My mother encouraged me and challenged me throughout my life. We sometimes disagreed, and that created a stronger personality in me. I kept going even if I failed at something. She would want me to be brave.