There’s not a whole lot in my life that I regret. Even before Ariella was diagnosed with cancer we tried to live life to the fullest. We spent time together, went on vacations, played games, imaginary play (so much imaginary play which I did not enjoy but would give anything to have her begging to play with me now). Sure we were busy and had to do the regular day to day stuff but family and home always came before work for both David and me. So I can’t say that I regret not spending more time together or saying I love you more or giving hugs, or things like that because I always did. I have always known life can change in an instant from losing friends in high school and college and somewhat unexpectedly losing my dad (he had heart issues but I certainly didn’t expect him to die when he did). I never wanted to be the person who regretted missing time spent with loved ones. And I wanted to spend as much time with my girl as she would allow. I always used to joke with her that one day she wouldn’t want me always around, that she would get annoyed with all the hugs and kisses and not want to sit on my lap. She always disagreed, saying she would always want hugs and cuddles and to hold my hand, and it was true, even at 11 she often held my hand when we were out, she loved to cuddle together in bed, and had not reached the phase where she didn’t want to be seen with her parents. We certainly saw the pre-teen attitude and eye rolls but mostly Ariella liked having us around.
Once she was diagnosed of course we saw things differently. We always thought she would beat it but of course the thought was always there, what if she doesn’t survive? So we did even more. Gave her as many experiences as we could. Said yes to all the opportunities that came our way. We did not put her in a “bubble” in between rounds of chemo and instead let her go to the dance studio, have sleepovers, go to Build-a-Bear of course, and do all the things a 9, 10, 11 year old should do.
So no regrets with how we lived our lives and spent our time before and after cancer. But I do have a couple regrets and they are big ones. I regret not trying to cuddle more with Ariella when she was in the ICU. It was pretty challenging because of the vent and tubes and they said I could not lie in bed with her (I regret not fighting that too) but we both were aching to give each other hugs and just couldn’t. I regret not trying harder to give her physical comfort. I regret not trying harder to wake her to hear me when she was so sleepy but not yet under actual sedation so she could hear me tell her I love her and goodbye every time I left the room, especially to go home.
But the biggest regret, and I know I am going to get all sorts of arguments and comments about this, is choosing to do the bone marrow transplant. It was not guarantee of a cure, it is not standard treatment in sarcomas (it was a trial), and she was currently no evidence of active disease and having a good quality of life. Of course we don’t know if the meds she was on would have kept the cancer at bay but I am certain she would have lived longer and would have had a better quality of life. If she did decline due to cancer we would have actually been able to tell her goodbye, she could have told us her goodbyes, we could have gotten more hugs and kisses. She could have been made comfortable but maybe not as scared. Instead she had 2 of the crappiest months a child could have, only being able to communicate by writing, not being able to eat or drink, being uncomfortable with complication after complication, not being able to say goodbyes or know or be aware of the love that was surrounding her at the end. She was scared she was going to die. We never promised her she wouldn’t. But we redirected and instead just tried to reassure her that that the doctors were doing everything they could. While of course we were worried about the same thing. Cancer is traumatic. A dying child is traumatic. But there is so much more trauma with the way that Ariella died than I can ever put into words and I will never not regret doing the BMT and nothing anyone says will change my mind. The 3 of us walked into Hopkins together hopefully optimistic that the BMT would keep the cancer from coming back. But only 2 of us walked out. Wasn’t worth it. It’s this, this is what plagues me a good amount of the time. The actual medical and emotional trauma Ariella went through and that we went trough watching it. The not only not being able to help or comfort your child but feel like you’re the reason she’s in the pain and discomfort. I know we made the best decisions we could at the time given the information we had and we thought we were acting in the best interest of Ariella and everything else everyone is going to say about blaming ourselves. Intellectually I know it. But the regret will always be there.
As I said at the start, I don’t have a lot of regrets. But I can’t let go of the one I do have. And I’m sure I never will.
You don’t know me. We’re remotely related through mutual friends. I started following your posts on Facebook in March. I can’t imagine what you’ve gone through. No one can really. All I know as a parent is what you know too. Everything you did, you did out of love. And it’s clear to me in all your posts and pictures of your daughter that she felt that love. None of you deserve what happened. No child should have to lose their life to such a disease. No parent should have to watch their child suffer or lose a child. I understand your regret. How could you not wonder? I wish I had some nugget of wisdom to offer. I just wrote because I see you reaching out and just wanted to reach back.
My heart breaks for you. I lost my husband in 3/14/19 at Hopkins. He too had a trach since Christmas Eve I never got to hear his voice again. He didn’t drink for 16 weeks. I can’t imagine what it feels like. Just know people in this community are spiritually supporting your family with prayers. I hope your days get easier. Everyday for me is a struggle but everyday I look back and say, oh I was happy yesterday for a few minutes. Maybe eventually it will be hours and then days. That is my wish for you. Do what you can now and what you want to do for your self and no one else. This is your journey. Do with it what you want to do.
You don’t know me either … I found Ariella through Justin Berk. But I have followed your story and prayed, hoped, and wished a better outcome for you. That wasn’t to be.
I have wondered about the BMT. My daughter was diagnosed with Myasthenia Graves when she was five. I mention this only because I have been in a place where life or death decisions need to be made for a child. It is the most difficult situation one can face. If you fail, there is devastation. And, what parent doesn’t grasp for a chance to see their child healed?
That having been said, and even though I’ve no right, I agree with you on the BMT. I don’t think I would have chosen differently, especially with doctors touting survival chances. But I can’t and won’t blame you for seeing the reality of it. It would seem it wasn’t positive on any level, and may have robbed you of precious time. You have every right to rage against the decision. Rage against it for what it did, not for having chosen it. That you did out of love. Wishing you peace.