This morning we had AJ’s CAR-T Christmas Eve Party. Her infusion took place around 10:20 and lasted maybe 5-10 minutes. After that it felt like she had a battery plugged in and she was on the go. My cousin Irasema arrived around 11. She brought us a yummy breakfast to share with the nurses and also helped us entertain Ava. Ava had a great time showing her how she easy rolls around the unit and took her for a tour of the hospital. She took Ira to see the Jesus statue, get ice cream, and introduced her to all her nurses. During this time AJ also got to join in on some caroling that was happening on the unit. Then she taught her how to use the Oculus Quest. It’s definitely Ava’s favorite gift and she loves showing everyone how to use it. Once again thank you Santas.
After my cousin left we met with the transplant team to discuss what we needed to do if the CAR-T cells aren’t in her body long enough. I wasn’t too happy to having this discussion only a couple hours after getting the CAR-T cells. If I’m being 100% honest it kind of felt like the devil was just trying to tempt me and shake my faith. I even told the doctors this. Of course I tried to be respectful and understand they’re just doing their job, but yuck. Really? Anyway— We agreed we take a monitor and wait approach.
After speaking to the transplant team my sister and brother in law arrived. AJ dragged them out to easy roll and taught them to use the Oculus Quest as well. While we were out on the unit zooming AJ around on the easy roller, or as she calls it the easy rider, because duh she rides it, Casey came in to decorate her room. After a few games of spit, some crazy 8s, and present opening Ash and Bryan left. I’m hoping they take time to celebrate Bryan’s birthday, but am sad as it’s the first year in 30 I’m not with my sister at midnight.
Shortly before my sister left my mom arrived with Kohen and Ellie. While my mom and Kev ran over to the Ronald McDonald House to get her and the kids checked in for the night I got to spend some time with my terror squad. The nurses and fellow patients got to see what my crew is like. Ellie wanted to ride around on the easy roller, Ava wanted to be pushed around on a chair, and Ko just wanted time time with the VR headset. It’s just the kind of crazy chaos I love, but can only take so much of. 😉
After a few laps around the unit I was able to get them all in the room and calmed down just in time for Ava to visit with Dr. Patel and get her bandages from yesterday’s procedures taken off. As soon as she was done with that her cousins, and my cousins showed up. This and the arrival of her siblings is what she’d been waiting for all day. As soon as she saw her baby cousin Marco she smiled and said my babies are here, I’ve missed them so much! In case I haven’t made it clear my girl loves the babies. She was so excited to spend time with Matthew, Melanie, Amaya, and Marco. She couldn’t wait to show them the easy roller and her headset. Once we finally convinced her to settle down and eat some dinner she was only able to take a couple bites before her head started to ache.
I felt terrible for her. A couple weeks ago Gold in Fight and Crossroads Bistro sent out the menu options to Gold Families and Ava took such care in picking out the menu. She’d been especially looking forward to lasagna and didn’t have much. Once her headache hit she had to come back to her room and lay down. The nurses and night resident read over her trial protocol to see if she could be given Tylenol. All the while she just wanted to go back to be with our family. Once she was given Tylenol and hooked up to the monitors she was told she’d have to wait about 30 minutes before she could be unhooked and possibly rejoin the party. My sweet girl kept sending her brother and me to “entertain the cousins and make sure they didn’t leave.” Finally we decided they could come in in shifts and spend time with her before heading home. Unfortunately, her headache didn’t improve before bed and we had to have my mom and the kids leave for the RMH earlier than we’d wanted.
So here we are 10:30 on Christmas Eve. One of my lovies is not feeling the best and already asleep. My other two are five blocks away with my mom. I’m laying on an air mattress, stewing over how the doctors stole some of our hope with their talk of bone marrow transplants. I’m equally pleading and praying that this will truly be our best Christmas ever and that doubt doesn’t win or take up place in my heart. I need that hope I had going into today to return and ease me to sleep.
Merry Christmas to all and to all a good night!