Two years ago today Mark and I went to see our daughter’s killer. Our beautiful, bright, loving, carefree girl was stolen from us. She was abused, tortured, drugged and, after we helplessly watched this happen for 11 1/2 months, she was killed. I felt, and still do feel, like a victim of a horrific crime and I wanted my “day in court” to confront the perpetrator. I wanted to look directly at this hideous thing that took my Sweet GG away from me.
I expected to see something gruesome. Something black and dark and writhing. But this killer of my child didn’t give me the satisfaction that I was looking for, what I needed, to be able to…justify…accept…my new reality.
The cancer that Gabriella had – diffuse intrinsic pontine glioma (DIPG) – is so insidious that wasn’t possible to see much. This cancer isn’t like so many others that have a tangible, clearly identifiable form. This cancer hides itself amongst the healthy tissues that it invades. It is visible only through MRI’s and microscopes. We did see where the ventricles were blocked – almost completely. We did see a slight bit of hemorrhage in the frontal lobe where the cancer metastasized. It wasn’t enough for me though. I wanted to SEE the thing that killed my daughter.
Mark and I made the decision to donate Gabriella’s tumor fairly early on after diagnosis. We wanted to be able to give the gift of life to children yet to be diagnosed through research that could be done with Gabriella’s tumor. We were told that they would only take her tumor. I thought that only meant the pons area of Gabriella’s brain. But her tumor metastasized so much that they took her entire brain. (I type this last sentence and it takes my breath away. I loved Gabriella’s brain and her quirky sense of humor. I loved her intelligence and her outlook on life. I loved her ability to write and her beautiful poetry. All of which came from that amazing brain of hers).
The doctors actually told us that they couldn’t believe or explain how Gabriella was able to function at such a high level with her brain riddled with cancer as it was. That gave me a lot of satisfaction to hear that. My tiny, little girl gave one of the worst cancers know a huge fight. She was mentally and physically strong until the very end of her life.
Twenty-four days prior to this picture being taken cancer took our daughter’s life. Less than twelve hours after that we donated Gabriella’s cancer- ridden brain. I remember that quite a few people told me that Gabriella was now cancer-free. I know they thought that they were saying something soothing to me but, LOOK AT MY FACE IN THIS PICTURE! And, LOOK AT WHAT IS IN FRONT OF ME! Does anyone actually think that this is how a parent wants their child to be cancer-free!?! I can assure you it’s not!
Nineteen days prior to this picture we saw our baby girl for the last time. We touched her face and her hands for the last time. We kissed her sweet little face for the last time. Then we buried her.
This was the last time we got to be with some part of our daughter -and we had to share that with her killer. I remember being so angry that I had an overwhelming urge to smash the areas of her brain where the hemorrhage and the blocked ventricles were. Then, later, I had a tremendous feeling of regret for not thinking about offering organs or eyes for donation. What if her heart or liver or kidneys or lungs could have saved another life? When I mentioned this to Gabriella’s doctors they told me that they would not have been able to take any organs because of the chemotherapy that she had been on. That relieved me a bit but, we still could have donated her eyes. The thought that some part of our daughter could have lived on, but can’t, fills me with sadness.
For such a tiny girl Gabriella was so very powerful. She has left very big shoes for me to fill. And I try, with everything that I can, to make Gabriella’s last wishes become a reality by working to “crack the cure” for childhood brain cancer.
I miss you so much, Dolly. I love to twice as much as yesterday and half as much as tomorrow.