Cure Charlotte - Charlotte Kelly

Charlotte was a very normal child. She is our third child, and has two older brothers. Charlotte developed a slight problem with her left arm, which caused her to favor the right arm. It disappeared just as quickly as it came, and the hospital cleared us.

Next, the following month, a slight limp appeared, so a juvenile rheumatoid arthritis workup started. The following month, June of 09, we noticed a change in some behaviors. She no longer wanted to sit in her car seat, and was easily agitated. A trip to the ER again cleared Charlotte of any serious problems, and the rheumatoid workup continued. After 1 week, vague symptoms persisted, so we returned to the same ER that we had visited 1 week earlier, and a massive tumor was discovered.

I have been a nurse for many years, and I don't ever recall seeing such a sick child. Her weight went from 25 to almost 40 pounds in about 5 days time due to compression of the tumor against her aorta. She had a kidney occlusion that needed to be stented, in order for the chemo to escape the body. Fortunately, she had good response to treatment and after six cycles of chemo, surgery, and two stem cell transplants, we look forward to starting radiation, antibody therapy, and hope for a conclusion to treatment with a vaccine trial.

She is weak and feeble at present, as she is trying to recover from the physical stress of stem cell transplant. We are happy to say that we plan on sending her to preschool next year, one year after she was scheduled to go.

12/06/11 - We have been told Charlotte only has a couple of days left with us. Her tumors are bigger, her face is more distorted, her eyes are unequal. She has some paralysis on the left side of her face. Her eyes are not blinking at the same time. When she drinks, it dribbles out of one side of her mouth. She is awake for brief periods. She is not smiling, not enjoying anything. She is less
than 20 pounds.

That is all. We have told the boys that she is dying. They are beyond devastated. They screamed,...

12/07/11- Charlotte passed away early in the morning hours. Patrice and I were alone with her at the end. She left peacefully.

We are devestated beyond words. She has been fighting for over half of her young life. We will miss her dearly. We already do.

Thank you for the endless support. Please say a prayer for
Charlotte and her brothers, as well as the countless other children affected by this disease.