Day 75 at St Jude

At 3:30am, my alarm went off to give Jesse her meropenem. Luckily tonight is the last dose of that. At 4, I took the meropenem off and hooked up the zofran eclipse. I set my alarm to make sure I was awake at 4:30 to remove it. I woke up at 5:40 because I slept through the alarm. I did a quick flush and draw back on her line to make sure it was still working. Whew, it was.

I decided I’d better stay up so I didn’t miss Jesse’s 7am appointment. About 6:30, I woke Jesse and dressed her. She was begging me to go back to sleep. I told her she could sleep in D Clinic because we’d have about a 4 hour wait there.

We walked over to the isolation doors. Another family was already waiting. The mom mentioned she’d called her clinic as they ask you to on the wall, but there was no answer. As I was dialing, I asked her which clinic they called. She told me D. Between our arrival and theirs, someone had arrived at D clinc. After registering Jesse, I gave the phone to the other mom.

As we hung up the phone, the isolation nurse arrived. After Jesse and the other kid were dressed in protective gowns, she led us both to D Clinic. Jesse and I scooted the chairs together to make a bed, then she and I dosed off. At some time, her clinic nurse came in. As she drew labs, I asked if they were checking platelets. Turns out they weren’t. But she looked at Jesse and felt that maybe we should.

She left to send the labs, and Jesse and I dosed off again. I woke up around 8am when the clinician came in to do labs. She was angry about one of the nurses calling her boss because she wasn’t directly in the clinic at the time she was supposed to be because she was listening to a lady crying. I just nodded my head and listened. I’m just trying to get Jesse through her treatments and out of here.

At sometime they came in to tell me her platelets are fine, but her red blood had tanked. She was 8.4 yesterday, but today she is 7.6. They were not sure when they would do the transfusion, but we’d get one before we left. A nurse practitioner (not our regular or the one I really like) saw us. I asked her to write an order to discontinue the basal rate tomorrow after the antibody ended. Jesse has complained more this time about being dizzy than I remember. Some of the dizziness might come from the ativan too. The nurse practitioner doesn’t seemed interested in writing that order. I get so sick of these people who see us one time, but don’t think I have a clue.

Having the ativan and apreptitant along with the zofran has made a huge difference. Jesse ate yesterday and today. And knock on wood, the food has stayed down. And if I can get them to let me keep the nausea meds, maybe we can take her off the IV fluids sooner? We’ll see. I mainly want to see if the apreptitant is what is the magic ticket.

About 10:30, I heard the clinician ask loudly why we were still in D clinic. She then came to take us to the med room to start the chemo and antibody. When we arrived at the med room, I hooked up Jesse’s meropenem dose. The next dose is due at 7pm… not sure if that will happen then. We started chemo at 11 with the temolozide.

While we waited for the hour before irinotecan could start, I changed Jesse’s tape. I am really grateful the nurse today suggested doing that. We have been extremely fortunate this round with nurses (except for one nurse we saw briefly tonight… more in a bit). The nurse on Tuesday – she was okay. She’s the one that judged me when she first met me. The nurse for Wednesday – cancer survivor at 34, totally gets it, fantastic, and on the ball. The main nurse for Thursday and Friday – at first I think she was a little scared when she saw me. She was the poor soul who got caught in the middle of the IV fluids not being ordered and us having to wait 3 hours. But she has been fantastic too. Very compassionate.

Jesse also has another nurse in the med room she really likes. He has all these bracelets he wears. When she first arrived and was really scared, he used those bracelets to distract her. And she just fell in love with him. She asked her dad to bring her some bracelets from home to give to the bracelet nurse (who only wears purple uniforms and has a shaved head). She got to give them to him yesterday. Oh how that made her day. It made his too 🙂

At 12pm, the nurse started the irinotecan to run for its hour. Then it was time to do Benedryl and Tylenol in preparation for the antibody. Jesse asked to go to the bathroom, and for some reason it hurt. Our nurse called clinic for their opinion, and they asked us to collect a sterile urine. Jesse mentioned she needed to go again. The nurse got the sterile kit ready while I got Jesse ready. And we got the sample. And that time Jesse said it didn’t burn. Yeah 🙂

At 12:30, I gave Jesse more ativan. At 1pm, I gave her apreptitant. She then devoured goldfish, jello, teddy grahams, and ate some ice cream. She even ate a few bites of a honey bun.

At 3:30pm, I went to check the mail. Thank you Aunt Carolyn and Uncle Jerry for the paint by numbers, york patties, sticker diva book, biscuit goes to library, and UV light dancing flower. Jesse has enjoyed the paint by number.

Thank you Brenda and Larry for crayons, activities, puzzle, coloring books, stickers, gummies, Starbucks card, and addition cards. Jesse is really interested in putting the puzzle together, but got tired before she had a chance. Thank you Mark and Jill for the stamps. Jesse loved looking at the princesses.

I had been hoping a package for me that I’d order had arrived today. From what I could see, it had, but patient services directed me to call the Mail Room. I called them, they didn’t have it. So I waited about 30 minutes to go back to patient services to see if maybe it was in route. They didn’t have it and called mail room to see if they would send it. Turned out my option was to take the shuttle to mail room, wherever that is. I can’t because of Jesse being in isolation. So I get to wait till Monday. The package arrived here by at least noon. I think they also made some comment about it being Friday at 4:30pm. So happy that their lives don’t have to be spent sitting in a hospital, and they get to go home on a Friday (Yes internally I am thinking “up yours buddy.”)

When I returned to Jesse, it was time for her vitals to be taken. The main nurse for the day was starting chemo for another patient. She asked the nurse we’d had for Round 3 Day 1 to come in to check them.

She walks in the door says to me: “I can’t wait to go home. I have been here since 7am. And I keep waking up at 4am on the dot.” I told her well that’s great you have time to read or get a workout in. “No I had to do laundry for the youngest because he didn’t have his uniform pants in the wash last night. Then I did another load of laundry, loaded the dishwasher, feed the cat and dog, took out the recycling, and packed lunches. And for the recycling I had to break down the boxes because I asked them to do it.” (Read this is your whiniest voice)

I wanted to say to her that I hadn’t been home in 75 days. I also wanted to tell her to quit griping… her kids are healthy. So what you have to do that stuff now it’s done before you get home tonight.

Then she tells me to have a good weekend. I echoed the sentiment… but I didn’t really mean it. I can’t stand the ones that walk in here complaining about being here or sighing that they are going home. You can go get another job.

Jesse has no choice. It’s either be here to try to live or die. And for me, it’s no choice but to be here because she needs me to be here. Heck Mike flies here to see her, and I have driven through snow to get her here. I’d love to be at home where my internet works… and I don’t spend half the day fighting with it to stay up so I can work. Packages come to my front door. I don’t have to go tracking them down.

At home I can make truly gluten free meals with veggies and meat like I want. I don’t have to wait for someone else to cook it for me or worry about cross contamination. And at home I don’t have to share a kitchen with a bunch of people I can’t tell to clean up after themselves. Yes my feet and hands are starting to itch. Maybe I can get them to keep us in isolation because I have this funky stuff on my hand.

Yeah sure I could complain about her, but she’s the type who will say I was looking for someone to take my issues out on.

At 6:15, the antibody finished. Around 6:30pm, they hung the red blood to be transfused. Since Jesse was getting a half bag, it only took 2 hours. When the blood was done, we changed Jesse claves. It was 9pm when we walked through the door. I gave Jesse her zofran eclipse, which takes 30 minutes. Then it was time for the meropenem. This takes 30 minutes to transfuse too. When those completed, I put Jesse’s ethanol/ placebo in the white line. This needed to site for 2 hours. It was a little before 12:30 before I could remove it, switch her IV fluids to the red line, and wait 2 hours for the ethanol/ placebo to sit.

I did set my alarm to catch a few minutes of sleep. But Jesse decided that she was really thirsty from 1:30am to 2:30am. Then she had to pee. All of this is good because it means she is flushing the treatment out of her system. Just not great timing for me.

At 5:45am, Jesse needed her meropenem. At 6;15am, I gave her her zofran. I set my alarm for 30 minutes. When I removed her zofran, I reset my alarm for 7:52. We were asked to come to the Medicine Room at 9am because they had an order to move her chemo up 2 hours from yesterday. We hit some bumps in the road there. I’ll cover that in today’s post.