Day 22 at St Jude

This morning I woke before the resident came around. I don’t care for this one at all. She seemed surprised that I was awake this morning when she came in. After not telling me anything new, she was gone.

Jesse slept until around 9:30am when I woke her up giving her medicine. She is getting really ornery about taking them, and I have had to threaten to get her in the hold. I can understand the frustration at having to take them because they do taste bad. And in her mind she feels 100%. I keep explaining that right now she feels 100%. If we stop now, she won’t feel 100% in a few days.

The wound care nurse tried to stop by before 9:30am. I asked her to come back later because Jesse was still asleep.

Jesse’s platelets were lower than 100 this morning. With the upcoming placement of stents tomorrow, the doctors want her platelets at or above 100. Her ANC is only at 200. For the surgery to happen, she has to reach 500.

The research nurse for the “Ethel” stopped by to check on Jesse. She brought us the timer. Woo-hoo 🙂 Today is the last day of getting the ethanol everyday. Now she’ll get it every other day.

We hung out waiting for her platelets to finish and for her shot. Jesse has taken to screaming at me before the shot. She yells about wanting to go home and why am I doing this to her. I understand her frustration. After the shot, her personality changes completely.

After the shot, we left the room to check the mail. Then we went to check out the fish tanks and gift shop. On our way back, we met the school coordinator for St Jude. He gave us a tour of the school area. Jesse made a snowman while I filled out paperwork. Her class will meet 3 times a week for an hour starting at 10am Monday, Wednesday, and Friday.

Jesse was excited, but also very worried about where I would be. We assured her that I would in the waiting area doing my work.

We returned to the room. The new attending doctor and fellow stopped by. I like the new attending doctor. Very nice and remembered our oncologist from home.

Then the discharge nurse stopped by. She looked at Jesse’s wounds, which she deemed to be better. She also mentioned the vancomycin would end today. The miropenin will continue until Friday. If we are discharged, the nurse will teach me how to give the antibiotic through her lumin.

Her main oncologist came by. He was very surprised at the change in Jesse. He mentioned that her stent placement won’t happen tomorrow if her ANC isn’t 500 or over. He mentioned that she’ll have an MIBG later this week to see how she is responding. He also talked about her being able to start the next round of treatment later this week, but that he might give her the weekend off. He feels she needs a mental break. I don’t know if she’ll actually get it at the Ronald McDonald House. She really wants to go home.

She also talked a lot again today about being bald. A text from home from Ferfer with an offer to go bald again with her prompted me to ask Jesse if she wanted me and Ferfer to shave our heads and be bald with her. I thought she’d tell me no because of how upset she got when I did it for St Baldrick’s, but she wants us too. So when we get out of here, I am going to find a barber in Memphis to shave my head. It’ll be easier to take care of 🙂

Later on the nephrostomy nurse stopped by. She told us that when the stents are placed, they will leave the nephrostomy bags in place for a day. This is to make sure the stents are working. I am really glad she warned me of this before hand. Think I would have freaked a bit to see them still there after the surgery.

Jesse talked to her sister, dad, and grandma tonight. She is having a really hard time with not being able to get home. I hope that between round 2 and 3, she will have counts enough to get home for a tiny bit. She also got to talk with her great-grandparents and cousins. Unfortunately her temperature is climbing, which intensifies the desire to go home. After getting off the video chat, Jesse balled that it wasn’t fair that Chris wasn’t sick. She has also worried about going to school with older and taller kids. I think this one will get better once she has her first day at the school.

I was hoping to see the optometrist today, but no luck. The antibody has caused her eyes to stay dilated. And they will potentially stay that way for the next 9 months.

Thank you Susan and friend who makes hats. Jesse loves the monkey hat. Thank you Heather and Russ for the box of goodies. Jesse added the yellow flower pin to her hat.

Thank you Ms. Turner for the music goodies and books. Jesse was so excited to see the streamers. Thank you Mrs Carlsen for the “Kiss Me I’m Perfect Book.” We have the “Love you forever” book. And that is what Mike tells the girls every night at bedtime.

Thank you to Susan, Amber, and Brandi for the book of pictures of Jesse. She loves looking at the book. Thank you Jessica for the Barbie and clothes. Jesse has changed the Barbie’s outfit several times 🙂 Thank you Kim, Daniel, and Caleb for the pictures, card, and goodies. Jesse was really excited to see pictures of her cousins 🙂

Thank you John for the dry erase board and create your own books. Jesse enjoys writing and drawing.