Supporting St. Jude Children’s Research Hospital - Memorial Fund for Alexis Grace Bezilla
Every 3 minutes a child is diagnosed with cancer. March 9, 2017 at 8:55am was our minute.
In mid February of 2017, my 13 year old daughter, Alexis, began complaining of headaches. We made several trips to the pediatrician and tried a variety of medicines, but nothing helped. Alexis was tired a lot of the time and the headaches were becoming more frequent. The next steps were to get a CT scan and an appointment with a neurologist.
On Thursday, March 9 2017, I took Alexis to our local hospital for a 7am CT scan. I received a call at 8:55 am with the results. The CT showed a golf ball size mass at the base of Alexis’s skull. This mass was blocking her 4th ventricle and causing her spinal fluid to build up on her brain which was the cause of the headaches.
In those few minutes, our world changed forever. A few hours later, Alexis was admitted to our local children’s hospital and rushed into to surgery. Alexis had to have an external ventricular drain placed to relieve pressure on her brain. The doctors need more information so a full brain and spine MRI was conducted.
That evening we would learn that Alexis had a metastatic brain cancer called medulloblastoma. The golf ball sized tumor had grown out of cerebellum at the base of skull. It had “dropped seeds” all down her spine. Her spine lite up a like a Christmas tree on the MRI. In addition to the golf ball size mass and the lesions on her spine, there were also 4 lesions on her brain.
On March 10, 2017, Alexis went back into surgery for her tumor resection. Surgery went well as the neurosurgeon believed he had gotten it all. Alexis spent 11 days in the PICU and an additional 3 days on the pediatric cancer floor. She did well considering everything she had been through. She had few side effects from surgery and her team felt she would bounce back quickly given her age.
Alexis spent the following 3 weeks at home recovering from surgery. In that time, we worked closely with our oncology team at the children’s hospital on what was the best next step.
The decision in front of us was overwhelming. Alexis health, wellbeing, and her future was at stake. We spoke to any oncologist that would talk with us about Alexis’s diagnosis, treatment, side effects, and participating in 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.
The overall five year survival rate for children with cancer is 80%. For children with pediatric brain cancers, the 5 year survival rate ranges for 70% for those with low risk medulloblastoma to 0% for children with DPIG. Two thirds of all childhood cancer survivors suffer life long side effects from treatment. This can include cognitive delays, physical disabilities, infertility, chronic health conditions and secondary cancers.
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. They are one of the leading pediatric cancer hospitals in the world so we took a chance and had her files sent to St. Jude. When we got the call that they would treat Alexis, we packed up and went.
There is a very defining look cancer parents have. It’s a mix of devastation, helplessness and fear. We had that look. Our team at St. Jude saw it, wrapped their arms around us and welcomed us into their family. At the end of our first day, I felt something I hadn’t felt in over 3 weeks, I was hopeful.
The St. Jude tag line is no family ever receives a bill for treatment, travel, housing or food. This is a true statement. In our two and half years, we never received 1 bill for anything, not a bandaid, 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 for anything.
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. All tests at this point showed no sign of cancer. We were allowed to go home.
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. For the next 5 years Alexis would be on a schedule where she would return to St. Jude for a routine MRI and lumbar puncture on a regular basis. The initial follow u schedule was every 3 months so we tried to rebuild our lives in 3 month increments.
When we returned for a follow up scan in October of 2018, we discovered that the cancer had returned. This time it was in the tissue that surrounds the spine and it was terminal. We decided to go back into treatment with the hope to slow down the spread. This time around chemotherapy was our only option. Alexis was starting her freshman year at Linn Mar High School and we wanted her to have the opportunity to be a “normal” teenager. Every other week, my husband or I would fly with Alexis to Memphis for a few days to receive chemotherapy. This was our routine for almost 8 months.
In June 2019, we learned that her cancer had stopped responding to the current chemotherapy and continued to spread. After attempting various other chemo and immunotherapy treatments, Alexis began having pain in her hips and legs. Her cancer had exploded. There was mass at the original tumor site and lesions on her brain as well. Her body quickly began to weaken. It was at this point under the guidance of the team at St. Jude that the decision was made to stop all treatments. Alexis was to weak and her team did not feel she would be able to handle the other experimental treatment options we were considering.
We spent the next 3 months trying to give Alexis as much time as we could with those she treasured most. St. Jude did everything they could for her. No ask was to small.
We had been planning a girls weekend. Alexis, myself, her Aunts and a few cousins. The plan was just girls hanging out, doing girlie things and watching really bad tv. Alexis’s health was declining and she ended up being admitted to the hospital just prior to our weekend. We were still going to have our girls weekend even if it was in a hospital. When the palliative care team learned of our plans they asked how they could help make it special for Alexis. They organized manicures and pedicures for the 6 of us. They hired a local salon to come in for a few hours and pamper us all. It was fabulous. Alexis loved it. They handled everything. They even covered the cost. This is one example of how St. Jude supports it’s families. Every family is different and every need is different. If St. Jude can help, they do. 75% of St. Jude’s operating budget comes directly from donations. Those donations covers patient care, travel, housing and food. That day it covered a few hours of pampering which brought joy for Alexis and gave us happy memories that we carry with us.
Alexis passed away on October 28th, 2019 surrounded by people who loved her, whom she loved and inspired.
Everyday 43 children are diagnosed with cancer. Pediatric cancer is the #1 cause of disease related deaths among children 0-19 years old.
One thing pediatric cancer has taught me it that it takes a village to care for child with cancer. This year I am participating in the St. Jude Memphis Marathon in honor of my sweet girl and all the young warriors who are fighting, to shine a light on pediatric cancer and support pediatric cancer research.
Danny Thomas, St. Jude Founder, said “No child should die in the dawn of life.” I hope you will consider helping me shine a light on pediatric cancer and support St. Jude Children’s Research Hospital.
All proceeds from the shirt will go directly to St. Jude Children’s Research Hospital in memory of Alexis Grace Bezilla.
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