It’s been a while since I’ve written anything. It’s not that I haven’t wanted to, it’s just that I couldn’t get myself to do it. Writing down, or saying out loud some of the thoughts you have once you are told “there are no more options” for your child is a difficult task. I’ve felt paralyzed and sometimes ashamed by these thoughts and feelings, but it’s time to get them out.
In June we learned that Kendal’s bone marrow transplant was unsuccessful. Devastating doesn’t even begin to scratch the surface on how that felt. We had a little less than 24 hours to decide on a plan going forward and we were in a fog. We decided on some low intensity chemo to help Kendal buy some time, and get out of the hospital to enjoy her sisters and her life.
To my Kendal?
The questions and over-thinking and re-thinking and grief process were exhausting at first. Sometimes I was mad. Sometimes I was sad. Sometimes I couldn’t function. Sometimes I was happy. And everything in between. But slowly we emerged from the fog and initial shock and we realized: fight or flight? Were we ready to let it be and live out Kendal’s last moments the best we could? Or were we going to do everything we could to try to find someone or something to save our girl?
Most of you know we decided to fight. We could not give up on our girl. She sailed through transplant and proved to be stronger than we imagined. We knew in our hearts her story wasn’t over. So, after our wonderful trip of a life time to Disney, we dug in. Aaron and I spent hours emailing and calling doctors and contacts to try to find anything that would give us a sliver of hope. And we landed on Mylotarg.
Mylotarg is a non FDA approved drug, but is in the final stages of trials to be incorporated into some AML protocols. It was on the market a few years back but was taken off after liver complications were proving to be too risky for the benefit it offered. After some tweaking of dosing, researches are currently working hard to bring this drug back. After much discussion, debate and warning regarding the severe risks, our team agreed to a round of chemo including Mylotarg.
We are currently on day 25 of this round. Although Kendal’s liver has stayed strong so far, this round hasn’t been without its complications. Not only medical complications for Kendal – cellulitis, fluid overload, fevers, fungal infections, lines breaking, rotavirus that won’t quit, a PICU trip and more – but physical and mental complications for myself. Living in the hospital, not a hospital but a hospital room as Kendal is secluded to her room only, since February really wears a person down.
I miss Aaron.
But even when I see all these things and wonder if we made the right decision, even if Kendal gets really, really sick from a complication, even if Teagan doesn’t understand why I can’t come to her first day of preschool, even when I’m DONE living in this tiny box/hospital room, even when I feel like flight would have been so much easier, I know this is the right decision. I know that we needed to FIGHT for Kendal. I know that we needed to give her any chance no matter how small, at living. Because if we wouldn’t have done this round. If we wouldn’t have at least tried this drug, we know the alternative for her would have been 100% chance of dying.