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Gold Ribbon Hero: Ava Paige

Meet Ava, a 16 year old acute lymphoblastic leukemia (ALL) warrior. Ava is a singer/songwriter based in Nashville, TN. ACCO featured Ava in our Circle Up series earlier this year.

The story detailed below is an account written by Ava.

I’ve been singing for as long as I can remember and started taking guitar lessons when I was 7 years old. At age 10, I performed on stage with Kelly Clarkson at a restaurant. This fired my love for entertaining and I started songwriting after being invited to a writer’s night. Since then I’ve been writing and playing gigs all over Nashville. June 2019, I was doing a small tour in Texas, performing at “Cook Children’s Hospital” and a few local venues. During my sets, I was getting out of breath very quickly. When I was flying home, I couldn’t walk terminal to terminal without stopping to catch my breath. My mom (a retired nurse) also noticed I was quite pale. At that moment we knew something was wrong.

We went to my pediatrician as soon as we got home. She ran my blood counts twice because they were so low. She didn’t know exactly what it was, so she sent me to Vanderbilt Children’s Hospital. We were hoping it was another disease, but when six doctors walk in, it’s not good. They diagnosed me with ALL and admitted me immediately. The next day, I was in surgery to get a bone marrow biopsy, a lumbar puncture, and have my port placed.

I was getting chemotherapy almost every day. With leukemia, they want to get you in remission in 30 days, and then the rest of your 2 1/2 years is preventative (so it doesn’t come back). A week into my hospital stay, I was able to go home for a week but was quickly sent back to inpatient after spiking a fever.

During my treatment, I hit quite a few road bumps. I found out that I had a mutated form of leukemia known as B-cell, which makes it much harder to treat. They said I would most likely not get in remission in those 30 days. Since I was also on a high dose of Prednisone (120mg a day) I developed medically induced diabetes, and retained fluid. My body eventually adjusted and I was no longer diabetic, but the fluid retention got worse. One night I was rushed to the ICU when there was a significant amount of fluid in my lungs, and I couldn’t breathe properly. My blood counts stay quite low, so I get blood product transfusions very often. I have had more than 50 blood transfusions. The biggest setback, however, happened when my mother found something inside my nose.

Since the chemotherapy damaged my immune system, normal infections I would fight off could now grow freely. One of these infections was found in my nose. When my mother looked, most of my nose was black and necrotic. She called in the nurse, who called in the doctor, and no less than six hours later, I was in surgery. I proceeded to have four more surgeries to remove the fungus. By the sixth surgery, the surgeon couldn’t take any more tissue without destroying the shape of my nose. Things changed, however, when they came back in with a new treatment plan, a new medicine called blinatumomab. This treatment would allow me to still fight cancer while keeping my immune system. With the blinatumomab and a few other medicines, I can happily say months later I’m still fungus free!

We were in the hospital for about a month and a half straight, but there was never a day I was alone. With the help of friends and family, I kept staying positive. I looked at cancer as another crazy chapter to add to my life story. There were days I felt defeated, but a friend would show up and start singing songs and telling stories with me. There would easily be at least 10 singer/songwriter friends in my hospital room at once. The Nashville community has been so supportive and we even sold out my benefit concert in August 2019. Throughout my whole journey, I’ve managed to stay positive and see the good in all the bad.

I am currently going to clinic twice a month, once for lumbar chemotherapy and once for lab checks. I am playing where I can, whatever is covid friendly. I am songwriting like crazy and feeling really good and I’ve been staying busy with online school and online events. I post regular updates on my social media (@AvaPaigeMusic) and am doing well! I’m still performing, writing, and kicking cancer’s butt!!!

The American Childhood Cancer Organization provides resources and support to families of children with childhood cancer. Please donate so we can continue to provide our services free of charge.


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