Day 10 at St Jude

Around 1am Jesse woke up. She asked me to put on Scooby Doo. I dosed back off. Around 3am, Jesse woke me again saying she needed to do #1 and 2. It didn’t take her long to do her business.

While she was sitting there she noticed that Santa had come by with a toy guitar and the Doc McStuffin’s doctor bag she has been asking for. Jesse looked at it for a little bit, and asked me to put in on the bed with her. She feel back asleep.

Around 7:30am, we woke again. Jesse’s leg seems to be hurting far more today than other days. About 8am, Santa stopped by with another bag of goodies for her from donors to St Jude. Jesse didn’t really seem to be in to it… and he really didn’t stay very long. Later on Jesse asked me when the real Santa was coming. I told her that the man who came around dressed as Santa was giving Santa a break just like Phineas and Ferb. And this man’s Christmas wish was to help Santa. Jesse accepted that answer and moved on.

She was fairly grumpy this morning. I am not sure if it was due to the pain, exhaustion, or realization that it was Christmas. I felt a little grumpy too.

Jesse kept complaining bitterly that she had a wedgie. I tried to explain that she was so swollen on the right side it is going to feel like a wedgie no matter what. Finally I gave up and suggested just going al natural under the covers.

I went to check on the laundry. Tried to do it last night, but with one machine someone else had the same idea. This morning the washer was free, but they had left a load in the dryer.

The nurse came in and discussed her IL-2 shot. Jesse was so grumpy that she immediately went into orbit over having to have the shot.

About 9am, the doctor on the floor and fellow came in as we were trying to explain to Jesse about LMX cream. We couldn’t get through to her at all… and the doctor seemed slightly testy over his time.

They discussed trying to get her discharged tomorrow. I am not worried about it because we aren’t going home. Plus I can just see her running fevers while neutrophenic… and that will just put us back in the hospital. They talked about getting her a wheelchair today and into it to help with the leg swelling. I told him I would rather stay here because she is going to run a fever… and they’ll admit us. This way I don’t have to run back and forth.

The other concern was her pain management. He has recommended moving her to morphine by mouth. She can still push the button if she needs extra. And today we have needed extra.

He also ordered a count of her blood levels.

Once the doctors left, I asked the nurse to keep an eye on Jesse while I went to move the laundry to the dryer. I had checked on it a half hour after I started it. The other person’s clothes were still in the dryer. This time when I came back (about another 30 minutes) some woman was moving mine and Jesse’s clothes from the washer to the dryer. It took me off guard… and actually ticks me off a tad. I had my room number on the washer. It would have been nice for her to knock and ask instead of just handling my stuff. Or even assuming that the clothes in the dryer were mine.

Jesse wanted to use the bathroom. I suggested putting her doll house together while sitting there so she could play with it while sitting in the wheelchair.

It took her a long while to finally go. After an hour, I asked her nurse to keep an eye on her while I ran to get our laundry before that woman just came and chunked it with that other person’s laundry. Yes a minor stupid thing in the grand scheme of existence. But I was in a grumpy mood from where we are right now.

I returned to the room and putting Jesse’s dollhouse together. Jesse decided she was done going to the bathroom. Unfortunately a wave of nausea overtook her, and she puked in the bed. She got some in her hair and on the tape we just changed last night. I think that I am really going to push for the “sterile dressing change.” The window is plastic with silver and cloroprep in the bandage. If she’d puked on a gauze bandage… we would have had to redo it.

I helped the clinician remake Jesse’s bed. She sat in the wheelchair while waiting. She really wanted to lay down. After remaking the bed, I got a shower cap with shampoo in it to wash Jesse’s hair.

Once that was complete, I put her back in the bed. From sitting up and blood numbers tanking, she was exhausted. The fellow returned to talk about her swollen groin. They are concerned that Jesse might have an infection. She drew a line on her with a sharpie to see whether she is still swelling.

The fellow also mentioned that Jesse’s hemoglobin was 7.5 today (yesterday 7.4). St Jude wants that number to be at or above 8. She also stated Jesse’s ANC is at 200. But they didn’t trust the count because her ANC fell way faster than expected.

She asked our nurse to redraw the sample. It returned with a hemoglobin of 7.7 this time, but her ANC was still 200. Lower than 500 means a patient is neutrophenic. With Jesse running fevers, we will not leave the hospital until Jesse has no fevers for 24 to 48 hours. The fellow also ordered 2 antibiotics to help Jesse’s groin if it does have an infection.

I asked her why the ANC might have fallen so fast. The fellow explained that with the tumor being in Jesse’s bone marrow it too could cause that fast drop. Basically the tumor is hogging bone marrow space, depleting the space for red blood cells, neutrpohil, platelets, white blood cells, and other good blood cells. It could potentially be the medicine too… but we have no way of knowing for sure.

At 11am, the nurse gave Jesse her first IL-2 shot. Hoping that gets her immune system going.

Afterwards Jesse asked for some pretzels and grapes. She ate 1 grape and 3 pretzels.

Jesse fell asleep after the fellow left. She has been sleeping since then on and off. Her fever has also hit 102 F during that time.

At 4, our nurse gave her Tylenol to lower the fever so she can get blood. Unfortunately fever eats blood up. Since then her temperature has decreased a bit. The nurse opted not to give her morphine and benedryl right now because of how drowsy she is. The blood will finish somewhere after 6:30pm CT.

I keep praying that the tumor will be stopped and for a miracle. She keeps talking about wanting to be a doctor like the people here. If she does it great, if not I will not be upset. I just want her to be alive to make that decision. And oddly enough today out of the middle of nowhere, Jesse thanked me for bringing her to St. Jude.