That was it. I went on the Internet constantly looking for information, looking for other families in the same situation, hoping we could pool our information. It became our survival lifestyle – working, looking after the kids, and doing the research. How we made it on no more than four hours’ sleep most nights I don’t know.
Georgia seemed to be coping well from the treatment we had chosen. We were still aware that things could change rapidly. Then Georgia’s scan came back 12 months later and showed signs that things might be changing for the worse. I approached our neuro-oncologist and asked him if we could put a system in place that would enable our family to donate Georgia’s brain tumor to research. At that point tumor donation had never being considered here in Western Australia. We were worried that if things deteriorated quickly, we could lose the chance to help others in their fight, and we would be devastated. Our doctor swung into action. He contacted a doctor at St Jude Children’s Research Hospital in Memphis, Tennessee.
We actually felt bad making arrangements for an autopsy donation, as we thought our girl would beat the cancer and we were making decisions that should not be made. We continued to battle the tumor. Georgia survived 20 months and was still able to do everything until she passed away from a brain hemorrhage in January 2010.
When the day came to donate, the doctor came and removed the tumor. He was so emotionally moved by it all. He thought it was amazing that we had donated the tumor to research and was visibly crying. The tumor still had live cells when it was removed six hours after Georgia passed away. This really upset our son, who wanted the tumor so he could stamp all over it. But we said to him, “Look at it this way — the doctors may get more information from it and be able to grow it if it is still alive.” Georgia came into the world tumor free and left tumor free.
We never had a second thought about donating the tumor. We always felt it needed to be done to help other kids fighting this monster. We knew not many people had donated before, especially from Australia. The paperwork and documents the doctor organized for us are now a permanent fixture at our hospital for when another family wishes to donate. We feel that when things with the tumor start to change for the worse, that is the right time to get the paperwork organized. Don’t leave it to decide at the last minute, as then you may not get the chance to donate.
Many people have approached our family since our donation, expressing their respect for what we did as a family. We did it for some answers, but we also did it for the other kids out there and for their families. It’s devastating to a family to have to fight a brain tumor, especially one that has no cure. We have to do the best we can to help the doctors find a cure. And a cure can be reached only with more tumor donations.
We are pleased to say that a few families have put their paperwork in at the hospital for tumor donation if and when the need arises. That is one positive step we have achieved. We hope we have helped families see, as we did, that something good can come out of a bad situation. We feel we have done the right thing.
Maggie, Richard, and Aaron Marshall