Day 73 – 74 at St Jude

It has come to my attention that I had a misprint on the site about the Chili’s in Williamsburg. If I every state that something is better in Memphis, that is a misprint. The Chili’s in Williamsburg is way better.

Yesterday Jesse and I had to be here by 9am. Luckily they took is right back to the Medicine Room isolation. I know Jesse hates isolation, but I am loving it. No tracking all over the hospital. I can sit in one place and actually try to work when the internet wants to cooperate.

The teacher came by. Jesse was really excited to work with her on her school work. She even asked to do her homework right then. I am happy that she got it all done.

After she left, the social worker stopped by for a visit. The nurse practitioner that I really like stopped in too. She ordered some Benedryl and zofran eclipses and IV fluids. I have been voicing my concern that Jesse was going to get really nauseous. She also went to work on getting zantac and loperamide in the pill form. Yeah!

At 10:30, we started the temolozide. Jesse complained about having to drink the whole glass of water. She did do it. Afterwards she asked me for a bag of animal crackers. The irinotecan started an hour afterwards to run for an hour.

She then got Benedryl and Tylenol in preparation for the antibody. The dose of Benedryl is a 24 hour dose. The antibody started around 1:15pm, but we had to stop and give Jesse more Benedryl because she started itching. I’m not sure if it was from the antibody or the diluadid. She is on .1ml basal rate (continous). The nurse gave her a bolus at 45 minutes before, 30 minutes before, and right before the antibody started.

After the itching stopped, the rest of antibody passed quietly. Jesse did not seem to suffer any pain, and actually didn’t push her button last night. The antibody finished around 5:15pm. The researchers need a lab drawn an hour after antibody stops. While we waited, I gave Jesse her meropenem eclipse.

At almost 6pm, she violently threw up. She then wanted a cheese sandwich, but 30 minutes later that was up. Before falling asleep at 12am, Jesse threw up 4 more times. Anytime I tried to give her medicine by mouth, she was throwing up.

While I was waiting for her zofran, I put the ethanol/placebo in her red line. I gave her a zofran eclipse at 9pm and her meropenem at 1am. After her zofran, I put the ethanol/ placebo in the white line to wait the 2 hours. At 5am, it was time for more zofran. Jesse also need to use the bathroom. She needed medicine for diarrhea, and luckily that stayed down. At 5:30am, I gave her zantac in preparation for the antibody. And luckily that stayed down.

She slept until I woke her up at 9:35am to get ready to come over to the main hospital. I gave her two medicines, but unfortunately 30 minutes later she threw it up.

Luckily we were headed to the clinic. And we had the nurse practitioner who is on the ball. She suggested ativan for Jesse along with a 24 hour nausea medicine called apreptitant. She also was successful in getting all of Jesse’s medicines in the pill form that she could.

We met with her after they took Jesse’s labs and weight. Her weight surprisingly enough was 15.6kilograms. I am really surprised. As much as she threw up yesterday, I was preparing for a round with the nutritionist.

We had to wait for her blood work to come back before they would take us to the medicine room to start chemo. This is a little frustrating to me. Currently it’ll be after 7pm before we can leave. And this also means that I will have to give her a dose of meropenem at 3am.

And we had to wait for her doctor to come see us before we could head to the medicine room to get started. He mentioned something about coming home next week, but he wasn’t making sense to me. Jesse stayed on fluids for almost 2 weeks after the chemo and antibody of Round 3. And she needed blood on Day 7 after the chemo and antibody were done. He also talked about letting us go home for longer than 2 or 3 days. I am concerned that longer than 2 or 3 days… and I won’t get Jesse to come back. Heck, I won’t want to come back. If the internet and rooms here were more parent friendly, it might be easier…

At 12pm, we gave her another dose of zofran. At 12:30, we gave her ativan. After having the ativan, Jesse was able to take the 24 hour nausea drug, apreptitant. She then asked for animal crakers. After taking her temolozide at 12:52pm, I went to find her some animal crackers. She ate those and asked for chips. I made her wait until the irinotecan started before I went for chips. She has luckily not complained of pain yet, but she has complained about being dizzy.

As I was leaving a new volunteer was heading in. She was obviously uncomfortable, and this in turn makes me uncomfortable. Jesse enjoyed working on mosaic art with her. I guess sometimes I feel like I have to entertain these people when I really don’t want to. And yes Jesse enjoys the distraction… but there have only been 1 or 2 volunteers I have met that didn’t make me uncomfortable.

At almost 3pm, the nurse gave Jesse Benedryl to start the antibody. This plus the boluses of dilaudid have knocked her out. We have about 2 hours left on the antibody.