Why I Can’t Watch…
Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation
Day 5
Why I can’t watch…
When we were going through Isabella’s treatment, my days were spent tripping over other families battling alongside us. I would spend hours on Caringbridge, writing my updates, reading the updates of the kids I knew and following the rabbit holes down from those pages into new kids and their stories. I was drowning in the world of children’s cancer and I couldn’t get out of it. Neuroblastoma stories often times hit waves of death where kids would just drop out of nowhere and two days later, another one would follow. Most of you read my journal so you understand how hard it was to walk away. People would tell me they would have to find a secluded, quiet place to read my entries because they would be torn up over it. It was like a car accident that you couldn’t look away from.
I probably started following close to 40 different children during this time period. Night after night, trolling these pages of stories – trying to find out what new treatment has become available so I could research and get us in line for it. But day after day, all I was reading about was treatments that were painful, experimental, and ineffective. They were all treatments that were hoping to bridge you to the next big thing. A cure is coming and this new drug will keep your child alive until it is developed! What a joke. As of today, there is one remaining child who is alive. And even though I’m ecstatic that their situation has worked out, it is still hard for me to read. This last child was given a drug for kids who were in remission to keep the cancer away. We wanted to get Isabella on this drug but the drug company stopped making it because there weren’t enough kids to make it for. Yep. You heard that right. So they stopped making it. Welcome to the world of Neuroblastoma.
I couldn’t bear taking on new journeys. So I turned my eyes away.
People will ask me, “Did you just see what happened to that little girl Brooke from Texas?” No. No I didn’t. I just couldn’t watch these kids with their stories of diagnosis and hopes for a cure. Treatments would make them sick. They would have good days and bad days. The kids would beat the cancer; and then it would come back, and they would beat it; and then it would come back again. This cycle continues until it finally takes them. I have watched this movie first hand and I didn’t care to watch it again.
I watched the story of Lacey Holsworth and Adrian Payne from Michigan State University. I loved all the attention it was bringing to Neuroblastoma and I know good things came from that story being in the news. But as soon as I saw she was 8 years old and fighting a relapse, I knew how this story was going to end. I try to tell myself that one of these kids is really going to do the unexpected and survive. I want that to happen so badly. But each time a new child’s story is introduced in the spotlight, quickly the light is turned off and the movie plays again.
Leah Still is fighting strong. I love all the uplifting stories that the media develops and how the country has gotten around this amazing little girl. I pray that she is the one. The one whose light doesn’t go out. But you will have to tell me how it ends, because I just can’t watch…
Isabella’s mommy
