Every 3 minutes a child is diagnosed with cancer. March 9, 2017 at 8:55am was our minute. In those few minutes, our world was forever changed. Alexis was diagnosed with a metastatic brain tumor, medulloblastoma.
The decisions in front of us was terrifying and overwhelming. We spoke to any oncologist that would talk with us about Alexis’s diagnosis, treatment, side effects, and participating in a research study. All offered great advice. They gave us a crash course on brain tumors, guided us on questions to ask and what we needed to consider. From all the information that we were given and researched one thing became very clear. If you can get into St. Jude Children’s Research Hospital, then you go. St. Jude Children’s Research Hospital is one of the leading pediatric cancer hospitals in the world. Since they opened their doors in 1962, St. Jude has help push the over pediatric cancer survival rate from 20% to over 80% today.
We took a chance and had Alexis’s files sent to St. Jude. When we got the call that they would treat Alexis, we packed up and went. Alexis began treatment almost immediately. She did 30 days of radiation which was then followed by 7 rounds of chemotherapy (i.e. 7 months). Alexis finished her last round of chemotherapy just before Christmas of 2017.
We returned home in January of 2018, a few days before Alexis’s 14th birthday. Once initial cancer treatment is finished it doesn’t end there. The initial follow up schedule is every 3 months, so we tried to rebuild our lives in 3-month increments.
When we returned for a follow up scans in October of 2018, we discovered that the cancer had returned. This time it was terminal. We decided to go back into treatment with the hope to slow down the spread and give Alexis as much time to be a teenager as we could. Alexis was able to complete her freshman year of high school, participate in marching band, and attend her first homecoming dance.
Alexis passed away on October 28th, 2019 surrounded by people who loved her, and whom she loved and inspired. St. Jude was our shelter in the storm. They guided us, comforted us and fought for Alexis every step of the way. They loved, celebrated and cherished Alexis as if she was their own daughter, granddaughter, or niece. They honored her and cared for her with great love.
The St. Jude tag line is no family ever receives a bill for treatment, travel, housing or food. In our two and half years, we never received 1 bill for anything, not a band aid, blood draw, procedure, MRI, radiation, chemotherapy, nor hospital stay after hospital stay. They housed us and fed us for over 13 months in the time frame Alexis was in treatment. They paid for travel every time we traveled from Iowa to Tennessee. They gave us money for food while we were in Memphis. We never received a bill.
Alexis’s last wish that her Dad and I would find a way to give back to St. Jude and continue to fight for a cure. This year, I am running in the Memphis Marathon (5K race). I will be running for my beautiful girl. I will be running for the families that are walking through the doors of St. Jude every single day. This is a fight no one can fight alone, so I am asking for your help. Help us find cures and save lives.