Avery needed some platelets and an antibiotic and we had to wait for discharge paperwork. It took 5 trips back and forth to pack the car. Moving in and out is quite the chore. We are on floor 17 and the first set of elevators takes you from floor 2 (main check in) to 11 where you have to walk around the corner to take the next set of elevators to 17. Your room isn’t always near the elevator either and ours was down the hall and around the corner. From the check in on 2 you have to walk through the lobby down a hallway to the garage and either take another elevator to your floor or if you’re lucky you’re parked near the 2nd floor doorway. Fortunately, we have a wagon which helps and I was parked between 1 and 2. After I got everything packed we had one more piece of cargo to wheel down the hall: Avery 😊. It felt surreal to leave her last round after all this time and all that has happened. That was our new normal for almost 8 months…Heather constantly at Avery’s side. Me at home working and taking care of Leo and Noodle and occasionally visiting them in the city for small chunks. 

For some patients who are there for long treatment or long rounds the nurses will do a little celebration walk when you leave and some people decide to do it after an earlier round but that didn’t feel right to us so we always told them we wanted it for the very last round. They cheered, had a bubble machine, played some music from Frozen, clapped, and Avery was very surprised and in shock.

Since getting home Avery went back to physical therapy on Thursday and will continue to go on Tuesdays and Thursdays. I took her to clinic on Wednesday to give Heather a break and so she could spend some much needed 1-on-1 time with Leo. Our visit was relatively quick and after 1:45 in the car there we didn’t need any transfusions and got back in the car 2 hours later for another 1:15 home. I was shocked Avery let me take her solo and at one point unprovoked she said “I’m actually having fun with just you” 😂 . We kept Leo home all week because his ear infection caused an eye cold and he had the worst case of eye boogers I’ve ever seen. Heather took Avery to clinic Friday which was a much longer day where she needed blood (2 hours minimum) and a dose of medicine to boost her ANC since it dipped below 500. It had been decreasing since they stopped the daily dose of G-CSF (ANC booster) towards the end of her round. They didn’t get home until 7:00pm. She’ll likely continue clinic visits MWF until told otherwise. Lurie’s is building an infusion center down the road from us in Schaumburg but unfortunately it won’t be done until 2025. That would have saved us days of our lives. 

Avery’s appetite is growing which we love to see. Not that watermelons are wildly dense or filling but she’s eaten an entire watermelon already… along with bowls of cereal and avocados and pb&j sandwiches, etc. Her poops are no longer diarrhea 🥳. Today was the last day I had to hook up her IV antibiotic for C. Diff. We had to skip her longtime friend’s birthday party tomorrow because of her ANC. Such a bummer but Avery wasn’t aware of it. We couldn’t tell her in case she couldn’t go. My folks visited today. No other plans for the time being and my next update will probably be after we have her May 3rd MRI results which might not be until Monday May 6th. 🤞🏼