Day 16 at St Jude

In 3 hours Central Time, 2014 will be here. As we close out the year, Jesse is decorating her fireman’s hat she got today. She has been busy adding stickers for about 30 minutes. She has explained every sticker she has placed.

She also has not had a nap at all. Normally Jesse doesn’t nap anyway, so this might be a sign she is feeling better. She has been freaking me out in her sleep. Last night she did a lot of jerking and twitching. And the other night she woke us up saying she was scared in her sleep. Tonight she has told me she loves me several times and thanked me for bringing her here. All of it messes with my head…

I woke at 8am. Jesse was up about 8:30am. While I grabbed a quick shower, she watched something on Disney. I noticed the resident examining her as I put my stuff back in the parent room after the shower.

At 9am, her nurse came in to give Jesse her medicines. We asked her if she’d like to have her taped changed around her CVL before or after her shots. Jesse opted for the tape change right then. The betadine makes a big difference for her. No rash underneath, no screaming while we used it to clean where the tape would be placed. In 30 minutes, we were done.

The nurse returned to tell us that the doctors had ordered an ultrasound of her leg to make sure she had no clots. This time the technicians asked if Jesse could come to their office in Chili’s Care Center. We worked it out to where Jesse could go after doing the craft at 11am.

Before we left, the attending doctor and fellow came around. They felt the swelling in Jesse’s leg and labia had improved.

Jesse found the ultrasound to be very uncomfortable because they were having to press on her right leg. I think she was also miserable because her temperature was climbing. When we left for ultrasound, she was running 100.6. When we returned, she was 102.2.

We returned to the room for her shots and platelets. Jesse’s ANC is still 0. Her hemoglobin was 10.1, and platelets are 21. With platelets being 21, she was due for a transfusion.

Jesse opted to have both the IL-2 and GM-CSF shots straight; no numbing medicine. She did scream as usually, but barely cried. Instead this time, she wanted to place the band-aids on her shot areas.

After that, they started her platelet infusion.

At this time the social worker popped in. I had promised Jesse a drink for doing her shots so well. Jesse asked the social worker to stay with her while I ran to the cafeteria.

When I returned, the social worker left to see other patients.

For about an hour, it was quiet. The child life worker assigned to Jesse brought her some stickers and a book. She told us that child life was leaving at 3pm today for the holiday.

With that knowledge, I wanted to make sure I checked the mail before patient services closed. Jesse wanted to come along. As we wheeled Fred out of the room, we realized her wheelchair was gone. This actually was a good thing because I tricked her into walking to the elevators. Extra clean wheelchairs are kept in the main lobby. We snagged one and rode down to patient services. Jesse was excited to get cards from her cousins. Thank you Carol and Dorothy 🙂

As I was returning a call, the psychologists showed up. Never fails… get in the shower, middle of a run, return a phone call… someone interrupts me. Then the times I would like for someone to interrupt me… nothing. I must put out a vibe… need to tweak the vibe 🙂

She talked about Jesse’s needle fear and was impressed that Jesse doesn’t move. After talking about it for awhile. She left. I made my phone call, and got to talk for about 30 minutes before being interrupted by the infectious disease doctors.

We talked about the infection and how the antibiotics are working. Unfortunately when Jesse’s ANC does return, it is going to possible trigger a great deal of pain in that infected leg. I did tell them Jesse complained about her bone hurting. He mentioned that the doctors will probably order another MRI after her ANC returns. If the MRI shows certain things like pus, they will treat the abnormality in her femur as infection. This means 6 months of antibiotics. I’ll take it.

When they left, it was quiet again for a bit. Jesse acted like she was going to doze off, but hung in there.

I have noticed today her appetite is better. She actually ate half a blueberry muffin.

Around 4:30pm, Jesse was finally able to go #1 without issue. Afterwards we headed down to check for packages. I have ordered a cutting board to use an a mobile desktop. It wasn’t there yet, but we did have a package. Thank you Elaine, Cherry, Rebecca, Christian, Ann, and Jamie for the box of goodies.

The day nurse returned around 5pm. She asked about Jesse’s leg. I think that she is thinking the morphine is not really having an effect on Jesse’s pain with the leg. I have asked Jesse throughout the day if she wanted morphine or an ice pack. She has been choosing an ice pack. She did tell us that her leg felt better when the antibiotic was going in. Tonight she has actually asked for the morphine with the ice packs on her leg.

The day nurse was going to tell the night nurse to check with the doctors about changing her pain medicine since it hasn’t been as effective. I inserted foot in mouth by wondering aloud if it was the know-it-all nurse for tonight. Ah well… I’m tired and who doesn’t have moments. Luckily for us, we have one of our favorites. She is super sweet. I have liked the nurses we have met except for the know-it-all.

Jesse’s eyelashes are becoming an issue. They are falling out, and it doesn’t help that she’s a picker (no idea where she got that gene from…) I wonder if she is knocking the eyelashes into her eyes messing with it.

I am starting to have issue with the constant in and out of people. I wish I could schedule them all instead of just the dropping in. That way I know when to expect this professional or that, instead of feeling like I am “molding” around waiting for them to arrive. Plus then I could schedule them around activities Jesse wants to do. We were able to work things out today where Jesse got to do the craft, but she couldn’t stay long due to the ultrasound. Friends are different. They won’t make me feel guilty for stepping out for a moment. Sometimes I feel like the professionals look down on me. (More than likely all in my head). Plus then I could determine good times to do my work and return messages without being interrupted.

And the one person who was actually scheduled to show up… never did. Amazing.

Tonight Jesse’s temperature is 100.1. She has been shivering, which may mean the fever is rising. Her main doctor here feels the tumor is the cause of the fever. He keeps making the same comment about the size of it. (Sadly it is now 102.1)

Jesse has finally zonked… 3 hours left in 2013. Not all of 2013 has been bad, but it has definitely had aspects I don’t want to ever repeat. I’d like to repeat all the camping trips with everyone. I’d like to repeat our time together as a family all in one place. Here’s to hoping that 2014 brings Jesse and all kids fighting cancer (and actually anyone fighting cancer) a definite cure.