Editor’s Note: One day, their 9 year old daughter is perfectly normal and healthy. The very next day they heard these words, “Your daughter has cancer and it’s terminal.” It happened just that quickly. About one year later, Mark and Ellyn Miller’s sweet Gabriella was taken by DIPG brain cancer. From the outset, they decided that they wanted to do something to keep others from going through this horrible disease. They decided that they would donate Gabriella’s tumor to be studied to help find a cure.
As you can see from the note, the parents made the agonizing decision to donate their child’s tumor, his brain.
I am caught up in so many mixed emotions whenever I hear this. On one hand, this is a tremendous gift which will lead to new and more effective treatments. It is such a selfless action on behalf of the parents. Trust me though, when I say that they don’t think of it as a selfless act. I’ve walked in their shoes, I know.
It’s bad enough that our babies, our children are being diagnosed with cancer. Then we throw them into this world where they are tortured by antiquated and ineffective drugs which make them so damn sick that they lose their hair, vomit for hours and hours, become “demented-looking” (as Gabriella called herself because the steroids puffed her up so much), are confined to the hospital or home…. I could go on and on. And we parents do this with the hope that maybe some drug might come along and keep them going just long enough for some other new drug.
I don’t for one second regret the decisions that we made for Gabriella’s treatments. Those treatments gave us 11 1/2 months with our precious girl. If we hadn’t done what we did we would only have had mere weeks. But I will tell you that I am haunted and tortured by the worst possible memories of what cancer did to my daughter. After receiving this message I am reminded of the 24-hours that surrounded Gabriella’s death. We had made the decision to donate Gabriella’s tumor. We were in a good place with that decision. But when someone dies there is not a lot of time before it would be too late to donate. It needs to be done quickly. Our Sweet G died. The funeral home came to our house to get her. They put her tiny little body inside of that black body bag, zipped it up and took her away in the middle if the night. I insisted on going to the hospital the next morning for the autopsy. I didn’t want my little girl to be alone. I also wanted to see her. But, they wouldn’t let me. They said that death isn’t pretty. It doesn’t do nice things to the body. I would have to wait for the funeral home to “prepare” her. So we sat in a room next to where Gabriella was. Knowing that she was so close, knowing that she would never come home with us, knowing what was about to happen. Knowing doesn’t prepare you though. Knowing doesn’t prepare you for the sound of the saw that is used to cut your child open so that they can take the cancer out of her. Too late though, too late to remove the cancer because your child is dead.
And now another child killed by cancer. Another family not wanting others to go through what they have just suffered. Another mom, another dad going home to an empty bedroom…
Author: Ellyn Miller
Editor’s Note: Today, some of the greatest doctors in the world have Gabriella’s tumor, and the tumor of a little boy who, like little Miss G also gave it all. Using these two donations and others like them, these wonderful doctors are currently working on a way to destroy DIPG Brain Cancer so others will be able to live!
If you find yourself in the same situation and need someone to talk to about making a tumor donation, Ellyn is available to talk to you. Please email all your contact information to Ellyn@smashingwalnuts.org.