“She continues to amaze the world by her amazing beauty and zest for life.”
Our story begins on a Friday in May 2013. I noticed a lump on the left side of my then 21-month-old granddaughter, Raygan Batton’s, tummy. Truthfully, I thought she was constipated so took the necessary precautions and gave her miralex. She was a little whinny over the weekend but not enough to arouse any suspicion. On Monday morning, I called her pediatrician and got her an appointment to check the lump. Her doctor sent us to our local hospital to have x-rays and then an ultrasound. We got a call and I was asked me come in at 1:45pm, the same day. That’s where our horrifying diagnosis began. We were told that Raygan had cancer.
They couldn’t be sure the type but just by the x-ray and ultrasound, a cancer diagnosis was made. We were sent to another hospital (about 40 minutes away), to meet with an oncologist, that same evening. My beautiful, full of life, 21-month-old was admitted and our journey began. The next week was filled with surgeries, biopsies, and scans, along with a central line that was placed in her chest. After 7 days, we were sent home to await the results of the biopsies.
On June 7, 2013, she started the first of 6 rounds of chemo for high risk neuroblastoma Stage IV. Her treatment would consist of the standard COG protocol: 3 rounds of chemo, stem cell harvest, 2 more rounds of chemo, surgery to remove the tumor in her tummy, high dose chemo with bone marrow transplant, 20 rounds of sedated radiation, and 6 months of antibody therapy. The process would take 18 months and require hospitalization every 21 days for chemo and hospitalization, when chemo worked and her body was too weak to fight in between rounds of treatment. Multiple surgeries and over 40 days of sedation for procedures, radiation, scans, and surgeries. She was in hospital for 28 days for the transplant.
“She may be little but she be fierce!”
Through it all, our little ray of sunshine put up a great fight. She continues to amaze the world by her amazing beauty and zest for life. She loves life and has brought a community together. She may be little but she be fierce! She is 4 months off treatment and is NED: no evidence of disease. She will continue to have scans every 3 months for the years to come.
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