I know I haven’t posted in a couple weeks, but life has been so busy. Since AJ got home from her first HDMTX treatment she took a fall and really hurt her toe. Besides that and a few days of mouth sores she seemed to tolerate it well.
Last weekend my mom took the girls to see Frozen II and enjoyed a nice Saturday with them. When they got home they helped me decorate the Christmas tree and a bit of the house. On Sunday got family pictures taken and made a trip to Enchant DC. I wish we had spent more time at Nats Park, but Ava got extremely frustrated after only making around the iceskating rink once and Ko was already grumpy so we headed home.
We were able to spend Thanksgiving at home and got to enjoy some family time before heading back to Hopkins for her second round of HDMTX. Even though we got there by noon on Friday the bag of chemo was not hung until close to 11 pm. This is super frustrating because it means she’s definitely there until at least Monday. Sometimes kids can clear the methotrexate before 72 hours and be discharged sooner, but it’s hard to get that to happen when the clock begins at 11pm.
Since it was a holiday this time around I was able to check in with Ava and stay with her until this afternoon. During our time in the hospital we spend a lot of time watching Hallmark movies, doing our nails, walking the hallways, and choosing where to order takeout from. Grub Hub, UberEats, and DoorDash are our lifesavers when we’re inpatient. While we were at Hopkins Kevin was mostly at home with Kohen and Ellie. I think I’ve mentioned before that I am not a “Martha” and doing the household stuff is not my thing. Kev on the other hand does pretty well with tidying the house and makes the most of his time at home so this arrangement works for than one reason. Yesterday afternoon he was able to bring the kids to Hopkins to hang with Ava and I. Though it’s cramped and there’s not a lot to do they really do enjoy being together. I’m so grateful that they’re close and that even though it feels like Hopkins is so far home home it’s actually just an hour away and the kids can visit on weekends.
Today AJ and I focused on walking, drinking, and clearing chemo. Ava met the cutest baby girl who was her neighbor this time around. We kept going out to visit with her at the nurses’ station. She’s at the super cute age that sits in a Bumbo and tries to grab everything. AJ really is enjoyed trying to get her attention and making her smile. Around 3 Kevin arrived with Ko and Ellie. As happy as I was to have everyone together I knew it just meant that leaving Ava was getting closer. We took a couple laps around the floor, went down to Balducci’s to get some mochi and played some Uno. Ava also introduced her sibs to her new friend. Explaining to Ellie why a baby under one is in the hospital was not easy.
Ava’s HDMTX levels were taken at 4:30 and by 5:30 her nurse Caroline let us know she was at .5. She needs to be below .4 at the 18 hour mark and then .1 to head home. Last time she was at .34 at the 18 hour mark and .18 at the 24. All this gave Ava the impression she has a chance of going home today and hearing she was at .5 hit her very hard. It’s so hard on my mommy heart to see her crying. It was even harder to leave her. I thought having Kevin take her to treatments or begin overnight stays with her was hard, I didn’t realize how much leaving her would be. There’s just something so wrong about leaving your baby, even your 14 year old baby, at the hospital. I know it’s just for a night, possibly two. And I know with my whole heart she’s in the best hands. I also know Kohen and Ellie need me as well. But the thing is no one replaces mom and at the moment she’s the one that needs me most. Driving away from Hopkins today was brutal.
The thing is I can always count of Kohen and Ellie to lighten the mood and on life to keep going. Shortly before getting home I stopped my Burger King to grab them dinner. As we pulled away Ellie commented that after this meal she quit fast food because that’s all they’d eaten since I’d left. Since Thanksgiving weekend and unlike every other year my kids aren’t tired of leftovers they’re tired of fast food. Just another way cancer has changed our lives.
When we got home I had laundry to loaded and to fold. Wesley needed to be fed and also walked. Even though I’m not a Martha I’m doing all I can to keep busy and rush the time along. Ava’s next level check is at 11. I’m 99% sure Kev won’t give me the update until a reasonable time tomorrow, but it’s all I’m concerned with at the moment. My heart is with Ava and until she’s back it won’t be whole.
Below are some pictures from the last two weeks.