Ariella trusted us. From the time of diagnosis she trusted that we were making decisions based on her best interest. She dreaded chemo, dreaded radiation, dreaded all of it but she never really argued about it because she trusted us when we said it was what she needed to do to get rid of the cancer. We never kept things from her. When she was getting ready for her limb salvage surgery she knew it was a possibility she would wake up with part of her right leg amputated. But still she trusted us that the surgery was the right decision. We never promised her she would be cured. But we always said the doctors were doing everything they could. When treatment was working we shared that and when it wasn’t we shared that as well. She never lost hope because there were always other options. I remember one day getting scan news that wasn’t what we wanted. When I picked her up from school and told her about it and told her treatment would be changing she said “that’s okay, at least I still have options.”
When it came time for the bone marrow transplant Ariella was understandably scared. She knew about the radiation prior and the high dose chemo that would once again make her feel lousy. But once again she trusted us when we told her she would get through it just like she got through all her other treatment and it was her best chance to get rid of the cancer once and for all. And she went into the hospital with a positive attitude. Up until she started feeling the affects of the chemo she was dancing and singing with friends, playing games, roaming the hospital, and playing pranks. She was no longer scared. She trusted us and the doctors that all would be okay.
This is one of the images that plagues me. Ariella so hopeful and optimistic in the hospital, acting like she didn’t have a care in the world. Ariella receiving the bone marrow without complaint. Ariella and I watching TV and hanging out in her hospital room just talking and cuddling in bed together. Getting texts from Ariella when I wasn’t there. All that time just waiting until her blood counts came up so she could get out of there and get on with her life. She trusted me when I talked about all the things we would do once she had clearance from the doctor. She had no doubt at that point that everything was going well and it was just a matter of time before she would be sprung from Hopkins.
I guess this goes along with my regret and guilt. Ariella trusted us that the bone marrow transplant was the right thing to do and yet it ended up being the cause of her death. We let her down. We made the wrong choice. Yes I know hindsight is 20/20 and we made the best choice we could have with the information we had at the time but that still doesn’t change the fact that the two people who are supposed to keep her safe failed to do so by authorizing a treatment that has known severe complications. I see her happy and okay one minute and then everything changed in the next when she was intubated and scared she was going to die and always had sad eyes. And we couldn’t effectively comfort her. We couldn’t keep her safe and we couldn’t make her feel better.
Along with a lifetime ahead of missing Ariella and missing the memories we will never get to have, I have a lifetime ahead of having to live with those images of Ariella with sad eyes in the ICU, wondering how it all went so very wrong. She thought she would be fine, she’d get through BMT and have a lifetime of fun and friends and dancing ahead of her. At some point in the ICU she realized that was not the case and she might not be okay, even though we told her she would be. I made it a point to never lie to her about her illness but I didn’t think I was lying when I told her she would come through BMT just fine. I never thought death was a possibility. I just hope she never blamed David or me during that time. I know I blame myself enough. If only, if only, if only.