It was December 28, 2008 when we saw the lump in his throat. It was small, but very obvious. Someone finally took me seriously that something was seriously wrong and he was admitted to the hospital.
On New Years Eve, Joseph went in for a biopsy. A few days later on January 5, 2009, a doctor came in the room and said, “I have good news, it’s not cancer, Joseph has Langerhans Cell Histiocytosis.” We were so relieved… until we learned more. This disease acted the same as cancer and was treated the same.
Children under 2 years old had less of a chance of surviving, and my son was 6 months old. The disease was in his lungs, liver, skin, and he had a solid tumor in his chest. We would later learn it also was in his ear canal.
Treatment started immediately and at first he improved, but then he had his first of six relapses. We switched up his chemotherapy protocol, but over time each treatment we tried failed. In July 2010, we were told his only chance of survival was a bone marrow transplant. So we began the process to find him a donor and to keep him healthy enough to get a transplant.
I will never forget the day the call came. I was in the laundromat when my phone rang. It was the Transplant Coordinator calling to inform me that a matching donor had been found and it was time to move toward his bone marrow transplant. I collapsed to the floor in grateful tears, because my son now had a chance.
On October 4, 2010, he received his life saving bone marrow. Today, he is a survivor. But the fear that his disease will return never leaves, because there is not enough evidence to say he is disease free. There is simply not enough research to know. But we will not let that get us down and we will live each day like nothing else matters.