Has this been hard to read? Made you uncomfortable? Made you sad? I can assure you it has been next to impossible to relive. Even just rereading what I wrote back in 2018 has been hard but writing these final parts has really taken its toll. I’ve hidden from everyone how much it has affected me because I just haven’t wanted to talk about it. Writing usually is therapeutic for me but this has been grueling and these past few weeks have been quite challenging. I had a couple panic attacks, I’ve cried long and hard in my car most days, I’ve cried at my desk at work (which is awkward when sharing a space with 2 other people), I haven’t been sleeping well and haven’t been eating much. Yet I continued to write Ariella’s story because her story needs to be told. There are countless children like this. An unfathomable number of stories that must be shared. They deserve a voice. They deserved so much more.
May 2, 2019: With so much other stuff happening David and I practically forgot about the cancer, the thing that put us there in the first place. In the beginning of May she had a planned 60-day post BMT CT scan which showed no signs of cancer. But who the fuck cared at that point? Yay to no cancer I guess, but at what cost? That hell that Ariella endured, that all of us endured, that we were continuing to endure, WAS. NOT. WORTH. IT. We still had hopes that she would pull through but we also knew if she did she was looking at a very long road to recovery. And would she ever fully recover? What kind of quality of life would she have? These were all things we were thinking about. Meanwhile when we met with her team at that time we were told we were looking at at least 6-8 more weeks.
May 5-6, 2019: Things got really scary. Ariella had a decent couple of days but once again she went downhill. They decided to sedate and paralyze her to allow the vent to do the work for her to give her lungs more time to heal. That night was a very long night. The carbon dioxide levels in her blood were much higher than they should be. Vent settings were adjusted all night long and they even tried the oscillator ventilator (which, well, I will never forget the sound of that machine), but ultimately went back to the original vent. By morning they got her fairly stable but who knew if her lungs were irreparably damaged? And once again her kidneys were failing. It had been 2 months since we heard Ariella’s voice or were able to give her a hug. It was impossible to imagine that would have been the last time and yet it was all I thought about.
The next few days were pretty much the same.
I had intended to finish her story today but I can’t just yet. I desperately want to write a different ending.