Day 6 at St Jude

Today Jesse started the humanized antibody. She woke me up before 8am asking Landan, her 6 week younger buddy from home, if she could play with a toy horse.

At 9:30am, she began her chemo. This went quietly. She even ate breakfast while it was taking place. Not all of it, but at least a third of it.

Around 11am CT, they started her antibody. Within 5 minutes, Jesse was screaming that her legs hurt and then it was the back of her head. And I mean screaming bloody murder. She was yelling for me to save her. One time she yelled that she wanted to go to sleep forever. Our nurse called the doctor, and they decided to increase her morphine by a huge amount. I also got them to agree to give her neuronton, which I should have pushed for her to have yesterday to prevent that. Jesse was spoiled at CHKD because they started the neuronton before the antibody.

I did tear up from the fear for her and guilt at not really being able to save her from the pain like she really wants.  It makes you wonder what you are doing. I know this is about the best chance we have to save her life.  And if we can get the neuronton going ahead of the antibody, then maybe we can stop the pain.

The staff did tell me the first day would be hard because they chase the pain. I am going to push for that to change. Jesse is already suffering enough with her legs.

But since we were chasing the pain, we didn’t really catch it. Every 15 minutes I was hitting her button to get more. And with all the morphine in her… she was having dreams. In one dream, she was fighting Landan for a toy. In another dream, her dad and sister jumped a hole, and Jesse didn’t. In another, she fell out of a hot air balloon.

During her dream with Landan, I told him to give her back the toy, and that calmed her down.  She even talked about going outside to play with Emileigh, Landan, and Christine twice. It was a beautiful day back home and at least in her delusion, she got to enjoy it.

After 4 hours, the antibody and its pain were complete. But the morphine delusion isn’t. She has been waving her arms around randomly…  looking for grapes. Afterwards she jerks herself awake for a brief minute. Now she is asking for her boots.

We did get her up around 6pm because she said she had to go #1 and 2.  She pulls herself up using my hands and inches herself to the side of the bed. She hasn’t been able to do #2 since Sunday. We were able to walk her to the bathroom. It was a difficult trip because of the morphine. And in the bathroom she kept nodding off on the seat. I eventually talked her into using a portable toilet in the room because it had handles and a back where we can place a pillow. This allowed her to sit up on the toilet, lean back, and relax. She did look cute sitting there in our current situation. It’s not a situation that I would wish on anyone, but she did look cute.

It is a small victory for her to go twice today. She still has not peed since the tubes were placed. But the bags are getting equal, good return.

Around 8pm, her temperature increased to 102.3 F. The staff cultured her lines again. In 30 minutes it increased to 103 F. I do think it is going down now. The fever is either antibody or tumor related. Even with her temperature rising, Jesse still used please and thank you with the nurses. I am proud of her for remembering her manners at a time that I am sure she feels really bad.

Here’s to hoping that tomorrow will not be as painful or full of delusion. She is looking for a little horse toy from her toy box back home right now.