Kaylin was diagnosed in June 2015, shortly after her fourth birthday. We took her in for a low grade fever and leg pain. Five hours later, she was taken to the ICU where we were told our baby had cancer. She was admitted with a white count of 340,000 and diagnosed with Acute Myeloid Leukemia.
AML is the second most common form of childhood leukemia, with about 500 newly diagnosed cases annually. With her white count so high and her FLT3 gene marker, she was placed in a low prognosis bracket. She had two rounds of induction between June and August, neither of which achieved remission. After finding a perfect match on the national bone marrow registry, her doctors decided her best chance was to continue to transplant. After two weeks of full body radiation and some heavy duty chemo, and the help of an anonymous donor, she received her bone marrow transplant on September 17th.
She was cancer free for less than two months. She relapsed early December 2015. We were running out of options. We took her home while we waited and tried to come up with a plan. She had donor lymphocyte infusions and an experimental chemo called Vidaza. We made the most of our time at home and celebrated her miraculous fifth birthday. Weeks later, we learned that the chemo had worked and she was now a candidate for another transplant. We only had one more shot and chose to have a stem cell transplant, which would provide her body with more donor cells and hopefully eradicate her cancer once and for all. We knew there were risks, one being fatal graft versus host disease. We had to try to save her life.
On June 10th, 2016 after a ten day regiment of nasty chemotherapy, Kaylin received her second transplant. She recovered quickly and we learned that the donor marrow had taken over and she was cancer free again. Our joy was short lived. She developed graft versus host disease of the skin that caused her constant burning and itching. She had light therapy treatments in an effort to combat her raging skin. After that, she developed graft versus host in her eyes. This was something almost unheard of in children and involved eye drops 12 times a day, and eventually lenses made from amniotic cells in an attempt to save her vision.
The new donor cells ended up attacking her lungs. She was on a ventilator on and off for over a month. Each time she was intubated, her situation became more dire and we were told to expect the worst. We spent months in the Pediatric Intensive Care Unit. She would recover, and then her lungs would fail. Recover and fail again. In August, we learned that the cancer had returned, and was likely the cause of her respiratory troubles. Her doctors urged us to take her off the ventilator, as there was no hope for recovery. We opted to wait, and see what Kaylin would do. She had been in a medically induced coma for weeks. Three days after we learned the news, Kaylin woke up. Unable to speak, we held her and told her that we would fight for her until the last minute but gave her permission to stop fighting. We told her that we loved her and that she would never be able to know how proud we were of our brave warrior. Less than 24 hours later, she experienced respiratory failure while on the ventilator and died in our arms.
Childhood cancer is not cute, smiling, bald children running through the halls. It is agonizing and awful and tore our miracle child from us. It claims the lives of children every day. The government only allots 4% of funding for children fighting cancer. That is 4% to be divided for EVERY type of childhood cancer. The other 96% goes towards treating adult cancers. In the last two decades, only two drugs have been created for childhood cancer. They are forced to endure therapies and treatments that are designed for adult cancers. Childhood cancer is not rare. It is only rare until it hits your home, and then you meet 50 other local families fighting the same battles. It’s time for us to wake up and demand a change. Childhood cancer is massacre by negligence. We will never stop fighting for awareness, or for the families affected by this horrible disease.
We will honor Kaylin’s memory forever. She was compassionate and perfect, and taught us all how to love. She never gave up, and neither will we.