Throughout Hope’s treatment, I would occasionally mention tumor donation to Dr. Stew. As her symptoms grew progressively worse over a difficult eight months, we knew that Hope was never going to have a quality of life that was acceptable to her. Then our conversations with Dr. Stew about autopsy donations became more serious. Dr. Stew was beyond compassionate. He was clear that we could change our minds about donating Hope’s tissue at any time.
I think our early conversations with Dr. Stew helped us to have a more serious one when the time came. Dr. Stew asked for our permission to share Hope’s tumor with researchers and we discussed some of his views as to who should receive it. In the end, when Hope died on March 10, 2010, we felt totally comfortable that Dr. Stew would do the right thing and send Hope’s tissue to the best researchers. Dr. Stew stayed with Hope during her autopsy and made sure Hope’s blankie was nearby. That simple gesture brought us so much comfort.
Some time later, when we went back to Children’s Memorial Hospital to go over the autopsy results, we talked with Dr. Stew about what is needed for investigators to do their best work and take a step closer to curing pediatric brain cancer. Dr. Stew said that until we are all committed to collecting and sharing autopsy tissue we won’t beat this terrible disease. I hope other parents will join with us on this journey and decide to make the same decision that we did. Donating tissue was one step we could take to ensure that Hope’s life was not in vain.