Three years ago this morning our family had its last few minutes of normalcy and innocence. We had two happy and healthy kids… And, then our world was knocked off its axel.
Gabriella had an MRI scheduled. She had a slight palsy in her face and the blood tests that were done for things like Lyme disease and various viruses all came back negative. We had an appointment to see a neurologist for the following day. We just wanted to find out why GG had palsy in her face. We wanted a simple answer and a simple solution.
Mark left for work. I dropped Jake off at pre-school then Gabriella and I went to the hospital for her MRI appointment. As we walked out of the room where G just had her MRI I was met by a radiologist. My initial thought was that was strange. Radiologists never read the images immediately. Then he told me that they found something in her brain and I needed to go directly to our pediatrician’s office. I asked to see images. And, there, plain as day, was Gabriella’s tumor. I asked if it was cancer and he repeated that we needed to go to our pediatrician’s office. But, what could our pediatrician do? Our child had a mass in her brain. We needed a specialist.
I called Mark. He was in a meeting and stepped out to take my call. I told him that the doctors found something in Gabriella’s brain and that we needed to go to see her doctor. Mark also questioned why we should go to see a pediatrician but dropped everything and met us. Our doctor met us at the door to the office. She had been waiting for us to arrive. She told us that we needed to go to Children’s Hospital in DC immediately. The doctors would be waiting for us.
There is this short period of time where you still are ignorant – blissfully so – to what your reality is about to become. In truth, deep down, you really already know but you hang on to your innocence for as much time as you can because the thought of what is to come is too horrible to acknowledge. Little did we know that our new reality was even beyond “too horrible”.
We went home and made arrangements for Jake to be picked up after school. We called our moms and told them to get on the next flight to come up to us. We knew but we didn’t KNOW. Then Mark, Gabriella and I headed to what was to be the first of countless trips to Children’s Hospital.
We met with a couple of doctors and they gave Gabriella an examination. Once that was completed a child life specialist took Gabriella so that Mark and I could talk with the three doctors, a nurse and a social worker. The lead doctor told us that Gabriella had a brain tumor on her brain stem. We didn’t even have a chance to fully comprehend this before they told us that it was terminal….What!?! Did you just tell us that our perfectly healthy nine-year old daughter is going to die!?! Mark said, “No. We’ll get it removed.” We were told that surgery wasn’t a possibility. You can’t operate on the brain stem. It would kill her on the table.
They gave us choices. We could do nothing, no treatment. If we decided this Gabriella would only have a couple of weeks. We could go with radiation. Six weeks – 30 sessions – with the hope of destroying some of the cancer. We could also add a clinical trail to the radiation. They gave us information on the trails that were currently available. We were told that the average child has about nine months from diagnosis to death. There are no cures for this type of cancer. 100% of children diagnosed with DIPG die. There is no hope at all.
I really don’t remember going home. I do remember that Mark and I decided not to tell Gabriella that she was terminal. We did tell her that she had a tumor. We didn’t say that it was cancer – yet.
My memories of telling our moms and our sisters is hazy. The thought of those conversations makes me sick now. Can you even begin to imagine having to tell your family that your child is going to die within a year? It’s not something that parents should ever have to do. We call our families when we find out that we are pregnant. We call our families when our kids take their first steps, get their first tooth, loose their first tooth, use the potty… That’s what parents are supposed to do. Brag about the wonderful things that our children accomplish. We are NOT supposed to tell our family that our child is going to die.
Our children are the beginning of exciting and wonderful beginnings in our lives. Cancer steals those wonderful beginnings and turn them into the beginning of the end…An end that haunts us forever.