"This is the song that never ends,
yes it goes on and on, my friends ...
some people started singing it
not knowing what it was;
now they'll continue singing it forever
just because ...
This is the song that never ends,
yes it goes on and on my friends...."
The lyrics emanated from the radiant smile of a beautiful, nearly bald eight-year-old girl. Over and over again, the lyrics came, pausing occasionally to cough and vomit into a basin. When the face came back up, though, the smile was there again, and the song continued.
"This is the song that never ends...."
Some people would probably consider it irritating, but to us it was pure joy to see her smile again. Adrianne knows lots of big words, like: "Hickman Catheter," "Phenergan," "Amphotericin," and "Solu-Medrol." Would you like to see courage? Look into the face of a child with a critical illness!
Adrianne is a blessed little girl! She has a twin sister who was able to donate the life-saving bone marrow for her transplant. All the nausea and the pain are a result of the treatment, but it is a treatment that is rapidly healing her. That makes it easier to bear.
Two years after the events listed here, Adrianne relapsed for a second time. She had been through chemotherapy twice already, and had received a bone marrow transplant from her identical twin, Annaliese. The event plunged our family once again into the all too familiar depths of fear.
At what point do you stop fighting, and give up? In our family, we feel that one should never give up as long as they still have breath to fight.
During the treatment process approaching the second bone marrow transplant, we almost lost Adrianne to Venal Occlusive Disease, and Pneumonia. She spent 27 days in the Intensive Care Unit, on a respirator, and was kept paralyzed by drugs to keep her quiet. She came out of the ICU with a bleeding ulcer, and was unable to even hold her head up because of muscle atrophy. But she fought it all!
She went from hospital bed to wheelchair, even returning to school before she'd learned to walk again. She fought back every faltering step of the way until, on the first of March 2000, she received her second transplant. She had become so determined to fight, that the after-transplant recovery was comparatively simple maintenance. She'd been through it before, and knew what had to be done. She did it with a vengeance.
Today, at twenty, Adrianne is a college student. She still has that infectious smile, but now has lots of hair and long fingernails (she had lost her fingernails from chemotherapy damage). She is an incredible young woman, and a veteran fighter. Several times in past years, we've had the opportunity to appear on television for Children's Hospital fundraisers. She has not only helped to raise more than 20 million dollars for Children's Hospital and the Hutch Transplant Center, but her story has given hope to countless youngsters still embroiled in the battle against cancer.
Not all children and adults are so fortunate as Adrianne, because bone marrow donors are extremely hard to find, and the registry is small. Bone marrow has a very critical limit to its compatibility, so the more donors there are to search, the better the chance of life for a person with Leukemia. The tragic truth is that most people don't know of the need. Getting registered as a potential donor is as simple as a blood test. How about you? Have you registered?
