Charlotte had only 50% chance of survival

“We thought she just got the little rash on her skin from playing in the sand outside, but you know, it’s always better to be safe than sorry, so we took her to the GP. That was the first sign. Five months later, after many misdiagnoses, Charlotte was diagnosed with high risk stage four neuroblastoma cancer. Suddenly our whole world collapsed. It just didn’t feel real. Our protocol would last at least eighteen months and consisted of chemotherapy, surgery, stem-cell rescue transplant, radiation, and immunotherapy. Still, Charlotte had only 50% chance of survival. It was tough going with four children and one seriously ill, but we tried to stay positive and went one day at a time. At the end of her treatment, scans showed the disease was still in the bone marrow of her skull. She had refractory relapse neuroblastoma. I couldn’t believe my ears.”

“She received the best treatment in the world and it wouldn’t work. Devastated, we left the hospital only to return six months later for another scan. Our worst fears were confirmed; it was progressing, and now it was a size of a golf ball. We were given two options that nobody should ever hear; we could take Charlotte home to die or do palliative care chemo as long as she had good quality of life. Hearth broken, we chose palliative care chemo, and Charlotte started the treatment once again, five days every four weeks. In September she would start playschool, and she loved every minute of it. On a good day, she would spend hours outside in the garden playing. If she wished for three different meals for lunch, she got it. If she wanted to eat chicken wings at 10pm I made it for her. In December 2013 we had new hope; the scan showed the disease had reduced to just a shadow, unfortunately, this was short lived, and in January it had switched back on. We tried other combinations of chemo, but from January to March Charlotte grew weaker, and her last scan showed it had progressed rapidly to her whole body. On the 18th of April, we bought her home for the last time. In my possession I had a ‘Do Not Resuscitate’ Order for my beautiful 5-year-old daughter. Our only goal was to keep her pain-free. Charlotte died 10 days later, 28th April 2014. Grief will never leave me, I know that. It will always be a big ball in my chest. Only life grows around it and I will have to learn how to live with the triggers around me and how they remind me of her. I shared our story in hope of awareness of the importance of funding the research of this horrible disease.”

This story was highlighted by the Childhood Cancer Foundation.  (4/7) #LetsDoThisTogether