Make this short tonight. We went into the hospital this morning and Summers numbers were okay-ish. Nothing was stopping her from treatment. Katie said that it’s been 28 days since her last treatment, and that means its go-time TODAY. Tonight actually. Dr. Gajjar came in for a brief visit, the place was packed today and I think we were in a spot that was not worrisome for him. He asked how her time at home was. As if to say, you had your fun… Now we get back to work.
Lunch today was Moe’s in the St. Jude cafeteria… Summer is now a big Moe’s and Chipolte fan. So, she knocked out a decent amount of food without blinking. Her weight has been steady and improved a few kilograms since Christmas.
That reminds me, Dietary came in today to scare her with the feeding tube conversation, but they said her weight has been very small changes over the past 3 or 4 months and that makes them happy. Keep eating and she can avoid nasty things shoved down her nose. She has a keen memory of this from CARLE and I don’t think she ever wants to do it again!
I have spent many days running around this place with Summer over the past summer and fall… And generally, we do pretty well. But this in-patient thing is super hard.
Tonight, we came back to St. Jude around 8 PM to get checked in for her Chemo treatments over the next few days. We were brought to a room that is normally set up for isolation patients. That means the “guest/caregiver” quarters are separate rooms. No connection to each other except a window that lets us look at each other. I have to exit my room into the hallway and enter her door from the outside. The last time we did this, I had a door that I could leave cracked so that I was ready for her every beck and call.
It’s a drag. I was in my room setting up my bedding and unpacking my clothes for the next few days and I felt a bit of guilt that I was not with her. So, I sat in her room and worked on her ipad that has an HDMI problem while she fell asleep. Even with her resting peacefully… I felt like a bad parent heading back to my room and leaving her side. I kinda shook her awake (I’m that Dad) and told her I was going next door.
I told her she could throw something at the glass if she needs me… She told me that I should just answer my phone. God she’s smart.
Tomorrow at 8AM she gets her first dose of chemotherapy for this session.
The last time we did this treatment, I kinda sat beside her in the medical recliner and we binge-watched the Tolkien show on Amazon. That worked out great. This time we are threatening to watch the Netflix show Wednesday. She also wants to rent “Nope”. Aiden said it’s pretty great. Maybe tomorrow night we can check it out.
Before I left the room… Summer asked for a “bag” to sleep with. They are starting the meds… And she knows what that means. Glad she’s an adult and can point wherever she needs me to go.