Cancer is so many things. It’s a lot of what people imagine, scary, tragic, arduous, cruel, non discriminatory. It is also things people don’t know, its many things I still don’t know.
One of the things I didn’t know was how boring treatment would be. Now most people would say boring is bad, I’m not most people. I’ve always told my kids, students, and parents of students that boredom is necessary. It allows for creativity to occur. Since being in the hospital I’ve learned boredom gives you time rest from excitement, both good and bad excitement. Today one of AJ’s nurses said that it’s a good thing to be the most boring kid on the floor because it means things are going well. Kev and I keep repeating it to ourselves when we feel like we can’t take a minute longer in this room.
We’re lucky to have visitors everyday as it gives us all new people to chat with. Ava wakes up each day looking forward to the days visitors. We have a calendar where write down treatment days and the visitors we have coming. Sunday it felt like another party with Kev’s coworkers, family friends, and some of my team stopping by. We had Bon Chon for lunch and a taco party for dinner. I made it home for a few hours and even had some car excitement when my car overheated and shutdown a mile from home. Thankfully Swan and Jason, Kevin’s best friends, came to my rescue and handled it while my mom took me back to get Kevin’s car. Though I made it back to the hospital in plenty of time I’m not sure when I’ll venture out again.
After busy weekend it was nice to my sister and brother in law be today’s only visitors. They stayed with AJ while Kevin and I made our way outside to Hopkins School of Medicine Bookstore. We had a great meeting with the oncology psychologist and discussed helping Ava make goals for the rest of her stay. She also helped us come up with ideas that would give Ava sense of control over somethings and thus lower some of her anxiety. We discussed helping her see outside herself and agreed that encouraging her to do something for someone else each day was a good plan. So in addition to the laps around the unit we took a trip to see some of the younger patients. Ava was able to deliver small treats to them. AJ spent rest of the day reading comics her awesome 6th grade teacher, Ashlie sent and watching movies her aunt Ashley brought. I guess you could say today was a boring yet Ash filled day?
Over the next couple days Ava will be putting together an Amazon Wishlist with things she feels the children would enjoy. These are things they can also these for bingo. So if any of you are looking for things to donate you could shop her list.
Tomorrow is day 8 and brings another group of treatments. She will get two through infusion and one through a lumbar puncture. We will also be watching her absolute neutrophil count (ANC) hoping it’s beginning an upward trend and moving closer to 200. Those are the final two things we need to get discharged. Of course she needs to stay fever free and have clear cultures. So we’d love your prayers for more boring days and encouraging results from her ANC count.
We try to take pictures with all who visit, but sometimes she’s asleep when they’re leaving and we miss out. All pictures go on her wall along with notes and cards. They serve as reminders of how loved she is. This crown is from her 3 year old neighbor Ailani. Cooking up plans to chop her locks. Aleix, Erin, and TrevorShe’s already finished three of these books from Ms. McGinnis.
TOIG showing support of AJ and Kevin.