Day 21 at St Jude

Last night Jesse spiked a fever of 102.1. The nurse and I think it was from the IL-2. This is the last shot for this round. After some tylenol, Jesse felt much better and wanted to eat. She also wanted to take Fred the IV pole for a walk. We walked down to the first floor and explored a little bit. Jesse and I found a new back way to the 2nd floor.

Jesse did feel well enough to face time with her sister, Emileigh, Landan, and Melinda later on. Yesterday she’d been very concerned about how people would look at her now that her hair has fallen out. The kids answered her question about her hair perfectly, and Jesse has felt better about the lack of it today.

Around midnight she was ready to go to bed. I suffered some insomnia… and bad judgement in not turning off the TV. Around 3am, I finally used my brain and turned off the TV.

At 8am, the resident woke me up. Not quite sure what the doctors’ deals were today… but sheesh. The resident was impressive. And I mean that with all the sarcasm I can muster. She asked how Jesse was feeling. I told her that Jesse said she felt better. I did mention to her about Jesse’s eyes and wanting to see the optometrist. She then pulled her personal stethoscope out, complained about how cold it was, warmed it briefly, and stuck it on a sleeping Jesse. Jesse stirred a bit. She then asked Jesse, who was sleeping, if that hurt. And this is after I told her about the stethoscope that was warm and hanging on Fred. When I mentioned it again, she commented that she’d pushed on her stomach.

Right after she left the attending doctor and fellow blew in. Not sure what fire was lit under their butts, but they looked at her; mentioned her ANC is up to 100, let me get one question in about how long the GM-CSF shots would last, and flew out of the room. The GM-CSF shots will last until Jesse’s ANC reaches 2000.

Jesse woke around 10am. She instantly wanted to get out of bed. Right as I got her set up, security called me. Someone hit my car. I went down to see what the damage was. There is a dent in the door of my car. Turns out a lady was bringing her 2 or 3 year old son to the medicine room. When she opened the door, the wind caught it slamming it into my car. She could have walked away and not found us, but she tracked down security to let me know. All the while probably worrying too about whatever brought them to the medicine room on a Sunday. I greatly appreciate her honesty. I wouldn’t have probably noticed it.

That was the first time I have been outside in a week. It felt so good. The security guard took me to the medicine room to get her information. I think she was a little concerned that I was going to be upset and nasty to the lady. Don’t think my Harley Davidson sweatshirt helped either. I was a little upset at having to leave Jesse to go deal with this, but in the big picture I wasn’t upset with the lady. She was honest. And she is under a lot of stress too trying to help her son get the care he needs.

Jesse was a little freaked out I was gone so long. She is becoming more clingy the longer we are in here. She spent about an hour this morning crying that she wanted to go home. Crying that she no longer wanted to take the medicine. She also had a moment of this isn’t fair because Chris doesn’t have to have shots every day. All I could tell her was that I feel frustrated about not being able to be home either. I also told her we have to stay and get 100% better.

After this melt down, her whole attitude changed. She asked to go with me to the cafeteria. And once her shot and half of her lumins were ethanol locked, she walked all the way to the cafeteria and back.

She has eaten half a hot dog and some fries today. Figure that she’ll get really hungry later tonight 🙂

Her blood counts are hemoglobin – 8.7, platelets – 57, white blood count – 0.7, and ANC is 100. Jesse might be released when her ANC reaches 500. I’m not 100% sure. If Jesse’s ANC gets high enough by Tuesday, they will take out the nephrostomy bags and put in stents. I am praying that this surgery happens. It will be nice for Jesse to be free of the bags.