Day 33 at St Jude

Last night Jesse had a rough night. The nurses had been coming in every 2 hours to get her to go to the bathroom. But last night they did not. And even though they didn’t Jesse was up every 2 hours going.

At 1:55am the fire alarm woke Mike and I up. I think it was the one time that Jesse slept. The fire department came, and we could hear people running around in the hall talking on radios looking for the fire. Plus they were slamming the doors that normally stay open, but when the alarm sounds swing shut.

Made me think of the Shamrock in 2012 where some guy pulled the fire alarm in the hotel. Except we hadn’t even made it in yet 🙂 Then that made me remember I need to see if they will defer my entry this year to next year along with Chris and Jesse’s. There is no way I can leave St Jude to go run a race. The guilt would be too great.

We all slept till 8am. Mike lifted Jesse out of the bed to use the bathroom. He put her back when she was done, and that caused a significant meltdown. Her stomach hurts this morning, and I am not sure it that contributes to the melt downs.

Mike told her that she was going to stay right there in the bed till she calmed down. This was effective in getting her to stop with the freak out.

The nurse brought her medicines. And she told us that several country music stars would be visiting St Jude today. Jesse is hoping Keith Urban is will them. They are very hush, hush about who is coming. But Jesse is on a list for someone to stop by and visit her later. This should be interesting depending on the mood they catch her in. Mike thinks the person that donated the blood she got yesterday is bipolar.

At this moment the rumor is still for Jesse to get the NK cells tonight at 12 or 12:30am. They will hook her up with leads to see how she does for 2 hours after getting them. Even heard the rumor that some kids get the cells in the medicine room during rounds 4 and 6. Hard to believe that we have been through 2 rounds of treatment all in 33 days.

The other rumor is that in 2.5 weeks, Jesse will have the scans done again to see if this is working. I really hope so considering that she was dancing last night, but this is cancer and everything changes in the blink of an eye.

If the IL-2 shot tonight doesn’t cause her to have a fever, we might get to RMH tomorrow. Yeah! Mike will have a chance to see it before he heads home on Sunday. I am praying that happens.

The psychologist stopped by 2 minutes before we were to face time with Jesse’s class. We explained the situation to her, and she agreed to catch up with us next week.

This afternoon Jesse got to Face Time with her class again. This really lifted Jesse spirits to see all the kids and teachers. I am hoping that next time we can do that, we have a better connection on our end.

After we finished talking to them, everyone hit the door in the Friday afternoon check in rush. First it was the nurse practitioner to see Jesse and check on what medicines she needed in order to be discharged tomorrow (hopefully).

Then the Ethel Research nurse showed up at the same time. She spoke quickly and then was gone. About 30 minutes later her main oncologist stopped by talking about seeing Jesse in clinic and tonights transfusion.

In the middle of this, Progressive called to let me know that my car won’t be ready until Monday (think he forgot it’s a holiday… so Tuesday).

Then 4 doctors/ nurses/ physician assistants stopped by. Too many people. And Jesse was feeling the overwhelm too. The plan is still midnight-ish. Then 2 hours with the heart monitor to make sure that Jesse doesn’t have trouble.

After that the social worker stopped by. She spoke briefly because Jesse was talking about going to get the mail. Thank you Reba and Gabby for your cards. Jesse enjoyed them. Thank you Madison and Lori for the pjs for Jesse and her American Girl Doll. Jesse was very excited they are purple. Thank you kindergarten teachers and assistants (and anyone else who particpated and isn’t involved with the Kindergarten classes) for the very generous American Girl doll you sent. You guys are amazing.

About 4:30, we changed Jesse’s CVL dressing. She pitched a fit at first, but we were able to get her to stay still so we could get it done.

Around 5pm, Jesse finally felt like eating. We went down to the cafe to get her some cereal. As she was eating it, the attending, fellow, and follower (don’t think he is a resident… not sure what he is) came by. I know they are all jovial, and most of the time I try to be, but all day with a happy one minute, bawling the next child frays your nerves.

They are pleased with how she looks. And plan to return early in the morning to potentially discharge her.

At 6:15pm, Jesse got the IL-s shot. She was not pleased with the time I chose and asked for the shots to be at 11am instead. So tomorrow we’ll give her the GM-CSF at 11am. This will make Monday, Wednesday, Friday interesting as Jesse will finish with school in time to get her shot. Wonder if she’ll be able to concentrate during that time. Sigh

Mike was able to start laundry finally. Our neighbor put her clothes in the laundry last night, and I guess forgot about them.

Afterwards she got to talk with Emiliegh, Landan, Melinda, and Chris. Emiliegh and Chris read Jesse a story. They did a great job. 🙂 Maggie was confused. She could hear our voices, but couldn’t figure out where we were.

As for the country musicians the rumor is that they will come around tomorrow sometime. If Jesse is discharged, I don’t really think waiting around for them to appear will be a good idea for her. She is having too many melt downs and too much negativity.

She spent an hour this afternoon freaking out because Mike is leaving on Sunday. Tonight she was really nasty to her nurse to the point we aren’t allowing her to watch TV and I had her in the bed. Mike let her out to cuddle with her.

Basically I am staying awake to see how the transfusion goes. I am hoping that Jesse will be asleep, but she is wide awake right now. She is complaining of pain where her shot occurred. She asked for an ice pack, but is still talking about it hurting. We asked her if she wanted oxycodone, but Jesse has refused. She has had no pain medicine since the end of the antibody. It is amazing how much better diluadad worked for her once we could get the doctors to listen to us to make the change.

She is coughing some tonight. I am praying that is not a bad sign as her ANC was 800 yesterday and will probably reach 0 today or tomorrow. And the transplant team asked if she had a cough. At that time she didn’t… the cough has started in the last 15 minutes.