And yet the blessings remain.
I realized I haven’t updated in a while so I wanted to jump on a give a quick recap of where we are and where we’re going. I’m sorry the updates are so spread out, but I feel like it’s just redundant to say she’s hanging in there. We’ve avoided any crises and that’s a good thing. Is she 100, no she’s fighting cancer. Even on the good days she still fighting. She’s still having poison run through her body in an effort to kill the leukemia. She’s dealing with chemo brain, missing school, nausea, and being poked and prodded. I actually never know what to say when people ask how she’s doing.
Though I’ve been super busy at work I’ve still been able to spend lots of time with my girl. I so love our crazy conversations and hearing her view on the world. In her latest opinion piece she listed all the reasons fall is a waste of a season and how much better spring is. My favorite reason was in spring you get Easter and the Easter bunny. This is way better than Halloween because he brings the candy all nicely packaged in a pretty basket and at Halloween you have to go out and get it yourself. On Wednesday night she saw Rachel Maddow on The Late Show and freaked out that Rachel actually has legs. It was so funny to see her so thrown off by seeing head to toe Rachel. Fall TV has brought her more to do and made time at home not as boring. She’s enjoying The Good Doctor and Superstore. New to her line up is This is Us. At one point she looked over and said Jack is the best dad ever! Poor Kevin said now he’s competing with husband Jack and dad Jack. Of course this made us LOL. Her latest goal is to guess more singers than Kohen on the Masked Singer and she’s very upset that he’s currently beating her. She’s so intent on catching up she even joined Twitter to make more valid guesses. Anything to pass the time between treatments.
Last week Ava was unable to begin the second part of her consolidation due to her counts not being high enough. We took the week without systemic chemo as a blessing and focused on giving her body time to get stronger and keeping her healthy. Her biggest complaints have been pain in her feet when she walks and a continued lack of appetite. It’s gotten so bad the old standbys are no longer working. She’s not into pizza, McDonald’s, or her beloved Jinya Ramen. Her feet have been hurting so bad it makes it hard to walk as much as she’s like. She is however still kicking ass in school and being her normal Ava self.
Thankfully she made counts today and was able to have treatment. Part two of consolidation begins with a 4 hour long infusion which somehow turned into Kevin, my mother in-law, and Ava being at Hopkins from 9am-6pm. Part two also comes with four days of ARAC this week and next. ARAC also comes with the risk of fever :(. That of course means we’re on fever watch AND also potential hospital admission. She’s also continued to drop weight and will need to increase her calorie count again this week in hopes of avoiding a feeding tube. Couple all this with with the fact that she will have a bone marrow aspiration at the end of these 29 days and the results of that will determine our next steps and it’s safe to say we’re sending up a lot of prayers. I’m trying my best to be upbeat and stay positive. But I’d be lying if I didn’t acknowledge that possibility of a being told she may need bone marrow transplant or CAR-T doesn’t scare me at least a couple times a day. These next four weeks will be full of prayer, angst, and constant reminders to live in the moment.
Did I mention today is Kevin’s birthday? He literally spent his whole day at the hospital with Ava. When I say I’m so blessed to have him as my parter, I mean it. Ava’s been so upset that she made it his worst birthday ever because we weren’t able to celebrate, but we’ve assured her 43 and a day is just as good as 43.
I’ll end this by sharing one of my favorite moments of the week. One night I rolled over to tell AJ something funny I remembered from my day and she responded with “Mom, you’re bothering me! I was talking to God!” Hopefully y’all will keep talking to Him on our behalf too.