Day 59 at St Jude

Because of needing fluids, our nurse practitioner scheduled a lab for 9:30am to check her levels. Jesse and I left RMH early because of the ice that was falling and an employee here saying the roads were bad.

We checked in at registration, who directed us to the Triage in Chili’s Car Center. Since we were early, Jesse and I waited until 9:30. 9:30 came and went, 9:40 came and went, and my OCD over time started to climb. If Jesse didn’t have school at 10am, which is important to her, I might have had a cooler head. But I walked in the door of the triage and asked when Jesse was going to be seen because she had school.

The lady behind the desk told me she was printing Jesse labels for her tubes right then. I got the impression from her that la ti da this is my job attitude she was in no rush. I told her that Jesse has school at 10. “It’s okay honey, you’ll make it.” I don’t think that woman is early for anything.

Needless to say she finished at 5 minutes before Jesse’s class started. And to get Jesse there on time, I had to really ruck it. The classroom is downstairs in a separate building from Chili’s Care Center.

I got Jesse there just as the teacher was calling roll. I hate being late. Hate it.

While Jesse was in class, I checked the mail and went to the cafe to get her something to drink. Her “water source” ran out at 4am. The nurse practitioner had told me it would last till in the late morning. I am learning.

I also was up at 2am and 6am to give Jesse her loperamide. I can’t get a straight answer on the dosage of that either. The bottle says every 3 hours when diarrhea starts… the nurse practitioner tells me that she needs one dose after a soft stool, then another dose 2 hours later. Then wait and see what happens. And this is the answer I get when I ask her how long do I continue the loperamide so that I can make sure we don’t run out.

After Jesse’s school time, we headed to clinic for our 11:15am appointment. 11:30 came and went. I gave them the benefit of the doubt. I’ve seen at least 3 new kids just this week. At 11:45, the nurse practitioner came out looked around, looked directly at us, and disappeared.

As we are waiting, Jesse saw a girl pass us with ladybug wings and face paint. She began begging me to go get her face painted. Had I known that we’d be required to mold for 30 minutes in the clinic waiting room, we’d have gone. I told Jesse we’d have to see how time panned out.

At 11:50, she comes back out and sees us this time. She walks over saying that she’d come out looking for us and didn’t see us. I told her that yes I saw you, and I’ve been sitting in the same spot since 11:08. Then she was complaining about the fact she needed to be in a meeting at 12. Really. I was on time. If you’d seen me on time, then you wouldn’t have to grouse about your other meeting that was obviously way more important than my daughter.

Then she tells me that thinking back it has dawned on her most kids on this round of chemo stay on IV fluids outpatient for a week. (Sorry I had to take a break to go mentally throw things). And now that she has Jesse’s labs, she can order from pharmacy the fluids that Jesse needs. She asked if I’d had the training for hooking up fluids, which I had.

She got someone to print Jesse’s labs. Then she was gone. A research study nurse zipped in asking if Jesse would be on a study for how kids are doing long term. Jesse started begging to go get her face painted. The nurse told us the festival ended at 12 (which it was 12), but to hurry over there because we might be able to get one of the goody bags.

So I ran Jesse and I over to the Pavilion. We made it just in time. Target I think was sponsoring this for the kids to promote their bug and jungle line? It wasn’t very clear to me. We arrived in time for Jesse to get a ladybug painted on her face. Then she got a picture in a car and later with the performers.

She also got to watch 4 guys dressed as frogs perform a circus du soleil style show. The face painting lady told me that was the 4th time they’d preformed this morning. Craziness how they could hold positions sideways, and one guy was doing one handed pullups.

Jesse and I left there to go to our social work appointment. They are working to help us get a refund from an airline since Mike had a change his travel plans in January. I didn’t think we’d be seen early, but the social worker saw us 15 minutes before time. I told her how much I appreciated it. She asked if I wanted to lodge a complaint over the wait times.

I told her no. I need to get over it. There are obviously a ton of people here this week. The parking lot at RMH this morning had more cars in it than I have ever seen. I am sure that all the employees are struggling to keep their heads above water. She told me that triage got so backed up Monday that many of her appointments were no shows or appeared an hour late.

Jesse and I left her, grabbed her IV fluids, and headed for Fisher Optical to get her new glasses. I had called ahead to see if they were there. The phone just rang and rang. The lady we met seemed so out of it, I thought she might be with a customer, and they don’t seem to have an answering machine.

We arrived to find out that they were closed. Luckily we were not charged for parking. But I am frustrated. It’s a case of that was the best, earliest time for me to go. Jesse’s red blood count was 8 today. I think we’ll have to get a transfusion sometime soon, if not tomorrow. And I am really surprised they let us go without a transfusion today.

Jesse’s ANC was 16,800 because of the IL-2 and GM-CSF. I am not sure with this chemo how far it will drop. I do know they want to see it drop and rise before we start round 4.

Since we struck out there, I took Jesse to McDonald’s to get something she might eat. The lady at the McDonald’s on Union Ave was so friendly (yes this is sarcasm). I was just as friendly back ( I did say thank you, but kept it all in a flat tone). And I paid part of the bill in all pennies 🙂 Guess she got the short end of my frustration. Bad Soosan, bad (I’m living on the edge *sarcasm again*)

Jesse and I arrived at RMH around 2pm. It took me 30 minutes to get the old IV fluids off the pump and the new ones on. Then when I started the pump, it told me the fluids weren’t attached. So I took it apart and tried again. This time I had success. Then I called the Medicine Room to double check what I put in for the reservoir level was the right level.

While I got Jesse hooked up and the ethanol in her other line, Jesse ate her chicken nuggets. She took 2 bites and was full. As she took the last bit, her bottom tooth popped out. We had discovered it was loose while waiting for her oncology appointment. She became very concerned about bleeding. I told her that her platelet count was good and that she would clot.

Then she was concerned about what the tooth fairy will bring her. Me too… Her sister got a bathing suit… but I don’t have someone here to run to the store for me while I stay with her.

She put the tooth in a bag and under her pillow. And at 9pm, she wanted to go to sleep. Maybe I need to figure out a way to have her loose the same tooth every night… maybe not, I’d run out of money…

At about 4, I talked with the IV Pharmacy. They were calling about Jesse’s IV zofran. The lady told me that she was going to check for more tomorrow. I told her I would do the same. Jesse has 3 left, and I feel that she needs it still. I also need to make sure she has written the order for Jesse’s IV fluids to last through the weekend.

I also talked with the travel office. Transplant called me today with Mike’s plan. From the looks of things, Jesse will start Round 4 around February 26.

At 6, RMH announced the monthly birthday party. Jesse asked to go for a piece of pizza. She ate half, and then wanted to return to the room. At 7:30pm she told me she wanted popcorn. Unfortunately at 8pm, she could no longer keep everything down. From the amount that she threw up, I am sure it was everything she ate today.

I am hoping the medicine she took tonight will stay down. I plan to give her zofran at 11:20 through her line. I did up the dose by 30 minutes this afternoon because she was complaining about her stomach. Her weight was 15.1kg today. I think we are hanging on by a thread of avoiding TPN.