“From birth, Georgia has been a feisty, tell-it-like-it-is girl with a contagious smile. We soaked up every minute of her learning new things and exploring the world. Her first several months of life we’re much like any child’s I suppose, happy, playful and filling up the world with her loveable nature.
When Georgia was 10 months old we noticed that she had stopped pulling herself up and wasn’t crawling the way she had been just weeks earlier. Her pediatrician suggested icing her knee but when things didn’t improve we were sent to Children’s Hospital for a “quick x-ray” to rule out a hairline fracture. I distinctly remember a conversation with my husband on our drive over, he asked if he should meet us there, I said, “No, by the time you get there we’ll be on our way home.”
Our quick stop turned into a 39 day stay filled with surgeries, biopsies, MRI’s, bone marrow asperities, and the list goes on and on. Georgia’s symptoms puzzled the doctors, but after 10 days of tests she was diagnosed with JMML (Juvenile Myelomonocytic Leukemia) and an AML (Acute Myelogenous Leukemia) granulocytic sarcoma in her left femur. JMML is seen in about three in a million children, Georgia’s presentation – JMML combined with the AML tumor in her leg was something new. When I asked if they’d ever seen this before, they said “not in recorded medical data.” Georgia’s diagnosis was made even rarer by a skin condition called JXG (Juvenile Xanthogranuloma), a benign skin rash that will eventually clear on its own. JXG is seen in about one in a million children, and although uncommon, it is sometimes seen in combination with JMML.
Georgia did one round of chemotherapy for the AML tumor and according to the doctors she “responded beautifully”. The tumor cells in her leg were gone, but the only treatment for JMML is bone marrow transplant. In January 2011 we checked back into the hospital for a long stay. Georgia endured another harsh round of chemotherapy to prepare her body, and again she wowed the doctors through this unforgivably cruel process. On January 19th, Georgia’s 14-month birthday, she received her new bone marrow from a young man we’ve never met, our hero, “Mr. Germany.” Several days after transplant she was transferred to the PICU, her liver had become toxic. Six days later we were back on the SCCA floor, a place I never thought I would feel thankful to be.
In the months following transplant we were in and out of the hospital and did our best to keep Georgia in the most germ-free environment possible. She’s dealt with GVHD (Graft Versus Host Disease) a complication of transplant which in her case has primarily affected her gut, causing her to not want to eat. After a feeding tube and rounds of steroids she has successfully tapered off of all immune suppressants.
Today, Georgia is (almost) three years old and in January 2013 she will hit two years post-transplant, a huge milestone for her disease. She is still closely monitored between Children’s and the Seattle Cancer Care Alliance with monthly labs and clinic visits and continues to make slow and steady progress.
The journey my child and our family has been on is unfathomable to most, but as we’ve met other families I have come to realize that we aren’t all that unique—childhood cancer is the leading cause of death by disease in the U.S. and the second overall killer of children, behind car accidents. The suffering our kids have to endure to survive is astounding, there has to be a better way.”