Final Chapter: May 9, 2019 (Part 7)

The morning of May 9 we had a scheduled meeting with Ariella’s team for late morning. However after they rounded they decided we should meet earlier. That didn’t bode well. I called David and he came to the hospital immediately and we teamed not long after he arrived.

In a nutshell, Ariella’s lungs were not improving and her kidneys were failing. Should she recover we were looking at dialysis. It wasn’t something that was reversible. After hearing from all the doctors and specialists we learned there wasn’t any more that could be done to save Ariella. That morning, we made an impossible decision, one no parent should ever have to make, to turn off the life support and say goodbye to our daughter. With tears streaming down my face I asked if we could bring her home with us. I did not want her last moments to be in that hospital. She had suffered greatly, the last two months of her life were horrific and I wanted her surrounded by her comforts, in her own bed. But they told me that wouldn’t be possible.

We let family and friends know that if they wanted to say goodbye, now was the time. Her room was overflowing with people, spilling out into the hallways of the PICU. I will always wonder if Ariella was aware, if she felt the love from everyone in that room, if she heard us talking to her, if she felt us holding her. One of her best friends laid in bed with her, hugging her, talking to her. How? How does an 11-year-old say goodbye to her best friend? I hope that if she was aware, that she was ready to go because I can’t bear the thought of her knowing she was going to die without being ready. There we were, surrounded by people, and I never felt so alone. People kept hugging me and putting arms around me and I wanted them to stop. I didn’t want to be touched or comforted. I wanted to run from the room screaming, I wanted to throw everyone out, I wanted to find a dark corner and just hide. But mostly I just wanted it to be me leaving this world, instead of Ariella. I would have done anything to trade places with her.

Around 3:30 that afternoon we asked everyone but Ariella’s doctors to leave the room. It was time. It was gray and rainy outside. We put on some music for Ariella and with me laying in bed with Ariella and David on the other side holding her hand, the respiratory therapist started gradually lowering the settings on the vent. Each press of a button further severing Ariella’s connection to life. Until the very machine that kept Ariella alive was turned off. And that’s when I prayed. I prayed so hard for that miracle. This couldn’t be it. She could not be gone. I was clinging to those last tiny little shards of hope that she would take a breath on her own, and another, and another. That she didn’t really need the machine. That the machine was hurting, not helping. But as we all know we did not get our miracle. In those final moments “Fight Song” began playing. For those that don’t know that was Ariella’s anthem throughout her treatment and we even have a recording of her singing it (which we played at her funeral). At 4:21 PM on Thursday, May 9, 2019, Ariella was pronounced dead (It took me a very long time to type that sentence. When I finally did it was 11:11, a sign?). The song “Better When I’m Dancing” was next to play (Ariella’s tap dance) and the sun broke through the clouds. She was gone. When the funeral home came to get her, we did an honor walk through the PICU with all the doctors and nurses lining the hallway as we walked with her. When we could go with Ariella no further I collapsed to the floor. I did not want them to take her away from me. I wanted to go with her. This could not be happening.

Somehow we packed up her room (I wanted to leave everything behind) and after 81 days in the hospital, 57 of those in the PICU, and 50 of those days attached to a ventilator, David and I walked out of that hospital for the last time as a shattered family of two.

I’m not going to share much about the early days and weeks immediately following her death. About 6 weeks after she died I started my blog so you can read about that time starting from here: Here I Am I will say that I didn’t sleep, even with medication. I could not shut off my mind. I was plagued by those horrific images from Ariella in the ICU; her panicked face, her asking (by writing) what if I die and am I getting worse, just how battered she looked, how unlike herself. Those days were being relived through a constant loop that I could not shut off. Though not as frequent I still am haunted by those images and it’s like I’m back in that hospital room all over again. We never could have imagined this was how it would all turn out and I would give anything for a do-over. I try to live without regrets and we made decisions based on the information we had but I 100% regret the bone marrow transplant (you can read about that here: Regrets ). The choices we made caused Ariella medical and emotional trauma. She had the scariest, crappiest, most agonizing months a person could have and we couldn’t make it better for her. This is something I have to live with for the rest of my life.*

*Please do not comment on my regrets. Please don’t say things like we did what we thought was best and such. Please don’t say it wasn’t our fault. Intellectual I know this. But I feel what I feel. And all the clichés and trite comments in the world cannot change that.

If you made it this far, thank you for reading. And for those that shared, thank you for that as well. And especially thanks to all of those who personally reached out to me throughout the telling of Ariella’s story. Knowing how it was impacting others is why I continued to write even though it was hurting me. I am emotionally and physically drained and other than sharing childhood cancer facts in my stories for the rest of the month, I am taking a break from advocating and from this cancer world. There was nothing therapeutic about this, nothing healing but maybe, just maybe it will bring more awareness to the reality of childhood cancer and inspire more action. I know it was not easy to read and that was the point.