I’m sitting in bed, awake, while my husband and son are asleep. I’ve kept away from looking at photos and reading the dozen upon dozens of messages that I’ve received today. I’m so glad that we went out of town. I’m not certain how I would have gotten through the day if we hadn’t.
Little did I know, two years ago at this time, that these were the last precious minutes that I would have with my daughter. Little did I know that this was one of the last pictures that would be taken with her alive. I would give everything I have just to be able to hold her hand again, to hear her voice and laugh, to hug her and to kiss her.
I hate the fact that of all of my wishes that I had during Gabriella’s fight against cancer that the one that came true took her from me so quickly. I wished that when Gabriella’s tumor returned and that her time on hospice would be short.
You could see by looking at Gabriella that the tumor was growing back. Her eye started to turn inward and she lost her smile on one side of her face. The cancer had metastasized to another part of her brain. The doctors couldn’t understand how Gabriella functioned so well when that damn cancer riddled her brain. But, Gabriella had full mental function. She took tests in school the week before she died. She even completed the homework that she had to do for college. The day before Gabriella came home on hospice she gave an interview for the book that she wrote the foreword in. She was so funny that she had everyone there laughing. That evening our family had a great time with all of us playing and goofing around before bedtime. We had plans to go to New York the following weekend – the weekend that she died.
She was GOOD. And, then she was dead. How does this happen? WHY does this happen?
I tucked Gabriella into bed and joined her a couple of hours later.
Nighttime had been a bit rough for the last few weeks of Gabriella’s life. G was having a little nighttime anxiety. She wanted me to sleep with her. We’d snuggle together. I’d tickle her back, arms, legs and face.
And, just like that, as if a switch had been flipped, the cancer made it’s final move to take my Sweet GG away. Gabriella had a very rough night. She couldn’t get comfortable and kept getting up to go to the bathroom. Sometime during the night her legs stopped working and I had to carry her. We had an appointment at Children’s Hospital the following day, Tuesday, for a new treatment. We had to take our sweet girl up to the floor in a wheelchair. We left the hospital with Gabriella on hospice.
We came home from the hospital on Tuesday not knowing how much longer we would have, not knowing what to expect, not knowing what torture our Sweet GG would have to go through before death would take her.
Gabriella didn’t walk again once we returned home. We would carry her to the bathroom. When that became too difficult hospice suggested using diapers. Gabriella HATED that and insisted on getting a catheter. The problem was that hospice didn’t have a child-sized catheter and told us that we’d have to wait for it. Then, Gabriella could no longer swallow. She asked for a feeding tube. Right after her ability to swallow went so did her ability to speak. And then Gabriella couldn’t even turn her own head. My baby was trapped inside her own body. She only had the use of her right hand and arm. Gabriella started to use American Sign Language to communicate with us. Gabriella had learned the sign language alphabet years before when she was six or seven and remembered all of it. Her brain was full of cancer that was killing her but she remembered everything. She would literally spell out every word. We had a notebook that we would write everything down in. Everything! And, Gabriella would get frustrated and angry because we couldn’t keep up with her. She knew that she was going to die and she wanted to tell us things that she wanted us to do before she died and after she died.
I can’t even to imagine the horror that a person would go through being trapped inside their own body. Knowing and understanding everything that was happening and going on but not able to do anything about it. I watched this happen to my daughter but I still can’t comprehend the terror that she was forced to endure.
It was a blessing when she finally went to sleep and didn’t wake up. The tumor took away Gabriella’s ability to move and speak. It didn’t take away her understanding of what was happening to her. It’s the cruelest of the cruel. I wish that she could have been spared all of that by having gone to sleep while she still had the ability to talk and move. But not with this horrible cancer. So, as Gabriella was peacefully sleeping, cancer stole the last thing from her – her ability to breathe.
We came home from the hospital on Tuesday and Gabriella died on Saturday. Why could my wish that Gabriella be one of the kids DIPG that would live for years come true? Instead, Gabriella went quickly. But, not before being tortured and humiliated. I’d give anything to switch places with her. But not being able to do so I fight on in her honor to help create a better world for the children currently fighting and those yet to be diagnosed.
Dolly, I love you twice as much as yesterday and half as much as tomorrow. I miss you more than word can say. xxoo