Yesterday while scrolling Insta I read this quote by Michelle Obama- “Don’t ever make decisions based on fear. Make decisions based on hope and possibility. Make decisions based on what should happen, not what shouldn’t.” It stayed with me because I think it really puts some action behind the thrill of hope I’ve been trying to focus on.
During rounds this yesterday I told the team how we have a tradition of all being together for New Years Eve, but I didn’t know if it was a good idea to have Kohen and Ellie come down and meet us. Dr. Bonifant assured me that we could make those plans and if anything unexpected occurred it we could always adjust. I was still hesitant to say anything to a Kohen and Ellie because it seems each time I’ve told them they could come visit something comes up and we can’t get them up here. I’d hate to let them down again. I think our biggest hesitation is that they’ll be bored hanging in the hospital with us. Then there’s the fact that days 7-10 could bring the strongest CRS reaction. So Kevin and I continued our wait and see approach.
Yesterday was a pretty quiet day. When you’re in the hospital over a week the days start to blend together. The only reason I know what day of the week it is, is because on weekdays AJ and I pretty much hang on our own while Kevin teleworks. Since yesterday was Sunday we had him with us most of the day, it was nice. Sometimes being Ava’s only entertainment and playmate gets a little exhausting, especially with all her new found energy. The down side to having Kevin with us is that he keeps us much closer to 11S. He’s more hesitant to let her roam the hospital and she’s even more wound up. I normally check with her doctors to see where she can go. He checks with the nurses. Our favorite daytime nurse is way more conservative with her leash. She has yet to have any noticeable reaction to the CAR-T so the doctors are like go have fun. Her nurse is like ummm ya I’m not sure. Even though Kevin and I are so happy she’s remained symptom free, she plain bored so I say let’s go, he says be bored it better than the PICU. She said her best feeling of the day was finally winning a game of Tonk.
Last night Trevor came to visit. He’s so good with kids and teens. He was able to help her have some fun on a yucky Sunday. I’m equally thankful he was able to bring me a new air mattress! Ava was having too much fun bouncing on it and I found myself sleeping in a pit on Saturday night. My new mattress is nicer and firm so my back is also happy Trevor stopped by.
Today was day 7 and it brought pretty much the same old, same old. As usual are days are filled with endless games of Tonk, easy roller rides around the unit, and a couple visits downstairs. Our biggest adventure today was going down to the 3rd floor library to print some paperwork. This afternoon one of AJ’s IIS teacher came to visit. It was so sweet of her to come all this way and reminded me that MCPS teachers are amazing. She brought with her some yummy cookies that we all enjoyed.
During dinner Kev and I chatted what we wanted to do tomorrow. We decided to go ahead a plan with hope in mind and told the kids to pack their suitcases so they could come stay in Baltimore with us till Friday. I won’t lie and say that little don’t jinx it voice isn’t still there, but I keep telling it to shut up. I keep reminding myself to focus on the reality of the moment and to live that. Our current reality is that AJ feels great. She’s strong, she’s energized, and she’s lonely. She longs for her brother and sister to be around so she can hang out with them. Our other reality is that I have a sweet little girl at home who’s dying to spend sometime with us. Even my PlayStation addict is missing us and would welcome sometime with his sisters and parents. So starting tomorrow our family of five will all be in Baltimore. Unfortunately my mom won’t be able to join us, but I’m sure she could use some kid free time.
The whole team here was been very confident that AJ will get discharged on Thursday. The all the nurses who’ve worked with us and the doctors on rounds have mentioned how barring any flukes we should be out of here on the 2nd. We’ll most likely stay at the Ronald McDonald House on Thursday night so we can come back for Ava’s day 11 labs on Friday. After that we all hope to head home to my mom, Wesley, and Lulu.
This is how it’s supposed to be. This is what I’m using to make our plans. I know it may not happen, but as Hallmark reminded me I need to be warrior not worrier.