“Congratulations! You are cancer free!”
There are various terms for this miraculous time: No Evidence of Disease (N.E.D.) or remission, but they both come down to simply “there is no cancer found in your body now”. It is such a joyous time for both the patient and his or her family. All the months of treatment paid off. Cancer is in the rearview mirror — now what do you do?
I caught up with my 9-year-old friend Adalynn Isom, cancer survivor and the 2021 Children’s Hospital Foundation Champion Kid, to ask her about life after cancer.
1. What kind of cancer did you have? Stage 4 I think, and I don’t remember the name, but I know it’s long (Stage IV HR Neuroblastoma).
2. How did having cancer change your life? That I had to go to the hospital a lot. I couldn’t see my mom for a long time, or my brothers or uncle.
3. What was the worst part of having cancer? I didn’t really like the shots at first. I remember I was crying a lot, and then I didn’t cry when I had a deal from Uncle Jimmy. The deal was if I didn’t cry I could get a slushee any time I wanted.
4. What was the best thing that came from having cancer? Meeting all my doctors and nurses like Taylor and Dr. McNall and Dr. Gallip!
5. How does cancer affect you now that you are “cancer-free”? I think I want to say hearing, because before I had cancer I heard all of the things and now I don’t really hear all of the things.
Adalynn completed her treatment for Neuroblastoma in January of 2021. She was diagnosed back in 2019, at a routine doctor’s visit. This aggressive cancer is usually seen in children ages 5 and younger, though sometimes kids are older at the time of diagnosis. Adalynn completed frontline chemotherapy, immunotherapy, and radiation, in addition to the hundreds of lab tests, scans, and hospital admission that she bravely endured. During many of these dreaded hospital stays, she spent long periods of time away from one parent or the other, as well as her siblings. She also endured many shots during her time in treatment, which apparently earned her all the slushee drinks she wanted.
While living with cancer is awful, there is a special group of people who strive to make a child’s life easier during treatment. The children come to rely on their new friends—the doctors, nurses, and child life staff. These new friends become cheerleaders, playmates, and confidants during this battle for life. The parents come to rely on them as a source of information, encouragement, and many times as friends.
My last question to Ady asked about her life now that she is cancer-free. I know from talking with her parents that they are so grateful that Ady survived this deadly cancer. However, they are also aware that the medications they had to give to save her life are also the same medications that destroyed her hearing, making hearing aids a necessity. She lost all of her hair, and at various points, all of her skin peeled off. In addition, the treatment has the potential to affect Ady’s growth rates, fertility, and heart function. It also raises her likelihood of battling another type of cancer in the future. The very same drugs used in adult cancer treatments are being used on children, and causing long-term complications at alarming rates.
In the United States, 96% of cancer research funding goes to adult cancers. The remaining 4% is spent on our children. Our children deserve more than 4% of cancer research funding!
Children are the future of this country. Now that you know what they endure, don’t turn away.