About the Author: My name is Ava Paige. I am a singer-songwriter born and raised in Nashville. On July 1st, 2019 my life came to a screeching halt when I was diagnosed with Acute Lymphoblastic Leukemia. The most common childhood cancer, acute lymphoblastic leukemia occurs when a bone marrow cell develops errors in its DNA.
My Life Before Cancer
I've been singing since I can remember and started taking guitar lessons when I was 7yrs old. At the age of 10, I randomly was at a Karaoke restaurant. I started the event and eventually, Kelly Clarkson, who was in the restaurant, came up to sing a song. I just had to ask her to sing a song with me. She did and you can find it by looking up “Kelly Clarkson sings Love Shack with a 10yr old fan”. This just fired my love for entertaining and then I started songwriting after being invited to a writers' night. Ever since 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 back home, I couldn't walk from 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.
A Shocking Diagnosis
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 (Acute lymphoblastic leukemia) and immediately sent me to a hospital room. The next day, I was in surgery to get a bone marrow biopsy, an LP (Lumbar Puncture), and my Port (a tube placed in my chest that circulates medicine throughout my body.)
Treatment and Road Bumps
I was getting chemo 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 relapse.) A week into my hospital stay, I got to go home for a week but was quickly sent back inpatient when I spiked a fever.
During my treatment, I hit quite a few road bumps. I found out I had a mutated form of leukemia known as B-cell that 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 3rd spacing (retaining fluid.) My body eventually adjusted and I was no longer diabetic, but the 3rd spacing 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. (At the time of writing this, I believe I have had over 50+ transfusions) The biggest setback, however, happened when my mother found something inside my nose...
It Was Fungus
Since the chemo damaged my immune system, the normal infections I would once 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 6 hours later, I was in surgery. I proceeded to have 4 more surgeries to remove the fungus. By the 6th surgery, the surgeon couldn't take any more tissue without destroying the shape of my nose. They scheduled the surgery for the following Monday and I joked that I'd just be Voldemort for Halloween. 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 Blina and a few other medicines, I can happily say months later I'm still fungus free!
Staying Positive
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 would definitely be 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 was 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.
Where I am Now
I am currently undergoing chemo every week, but all outpatient. I got in remission in 40 days instead of 30 (Much quicker than expected!!) and am still taking anti-fungal meds. I'm 10 months into my 2 1/2 year plan. I work with Childrens Miracle Network Hospitals and fundraise whenever I get a chance. I believe in giving back, especially to those who are saving my life. I post regular updates on my social media (@AvaPaigeMusic) and am doing well! I'm still performing, writing, and kicking cancer's Butt!!!
Re Mattei
June 07, 2020
Hi Ava,
Thank you for sharing your story. I am a singer-songwriter and a Family Nurse Practitioner. I have followed you on social media for a long time now. Love your music, your up-lifting spirit and your courage. You are in my prayers daily. Thank you for being such an inspiration. God bless!