Day 54 & 55 at St Jude

Day 54

Yes I am off a day or two… just did the start of Day 53 yesterday. But fortunately the rest of yesterday was boring. I always giggle to myself when I think back through my life to how the meaning of that word has changed.

The big excitement yesterday was the arrival of Red Fred the Lady Bug. Having a backpack to carry the pumps and IV fluids makes a huge difference. It is easier for Jesse, and we’ve had less tangles.

We did open a few packages that came yesterday. Thank you Bibby for the crafts, bag, and support. Jesse loves the bag 🙂 Thank you Mom for the book and stickers.

Jesse was exhausted and slept the rest of the day.

This morning we had to be here for labs at 7am. We finished the meropenem last night (crossing my fingers that she doesn’t get a line infection from her own bacteria now that we’ve stopped taking the antibiotic).

And today in Triage, we had success!! Instead of being upset, Jesse got on the scale with no trouble. She weighs 16.5kg ( 36.3 lbs). Her blood pressure was 105/57. Normally in triage she is 117/75.

I forgot my cell phone this morning. Guess I was worrying too much about having all of Jesse’s meds. It’s not a lot, but I feel like I am starting to fry in my head. And that fear of messing up something is causing me to over think things.

After labs, we returned to RMH to grab my phone. And in 15 minutes, we were back at St Jude checking in for the Medicine Room. The nurse asked if we could start 30 minutes earlier. Yeah! Really, really like her because she is totally on the ball.

Jesse took her temolozide at 8:30am. By 9:35am, she started irinotecan. Jesse did a great job taking her meds and drinking the required water this morning. The nurse found her a pink stuffed bear and butterfly balloon because Jesse has been so calm and polite.

The nurse practitioner stopped by to let us know Jesse’s counts. She is down to 2900 on the ANC and 8.3 on the blood. I have a really good feeling that on Sunday, we’ll be hanging out here getting some red blood.

Turns out that Jesse will get Sunday off from having any shots. The last two rounds they started the shots the day after. This round because of the irinotecan half life, Jesse will wait until Monday to start the IL-2 shots.

She also talked about stopping the diluadid basal rate two hours after the end of the antibody. So we might have to hang out here to wait for that time. And we’ll probably see the clinic on Monday. I did talk with them about continuing fluids. She did agree to let them run until they assess Jesse on Monday. They will run at 3/4 of maintenance rate for Jesse.

About 1:30am, Jesse complained that her stomach hurt. We waited to see if the wave of nausea would pass. By 2:45, the antibody was done and we were out the door.

Back at RMH, I gave Jesse her zofran and neuronton. Then I pulled out the one of the bags Melinda and I made for Jesse’s tape changes. In 30 minutes, we had the tape and claves changed. I put the ethanol in Jesse’s white line and waited 2 hours for it to be done. Then I switched her IV fluids to the other clave and put the ethanol in for 2 hours.

We called home to talk with everyone there. Jesse is getting pretty homesick again. But I think she is starting to understand that we need to get all this done. I am wondering now if we will have time to go home between round 3 and 4. The research nurse talked about this chemo hitting at different points in the cell life cycle. I wonder if it would be more advantageous to stay and complete round 4. I do really want to get her home before round 5 and 6 because the nurse said those chemos would significantly drop her counts and require more time for the ANC to return to a low normal level. This also means more GM-CSF shots.

When I talked to Mike, he told me that they had mailed a package. Jesse is so excited for that box to get here. (ME TOO!!! :)) He also told me that the post lady at Norge insisted on paying for the mailing. Thank you Carol.

He also told me about the lady in line with them. Chris has this habit of loudly clearing her throat because of her allergies (I love her, but it drives me insane). The woman looked at Mike and said, “I think she’s sick. You need to take her to the doctor. Her checks are even flushed.” Chris isn’t sick, the temperature was 35 degrees outside, and they had just come in. Mike thanked her for her concern. He’s really good at knowing when she is sick. Believe me there have been many times when I have had to tell him that she didn’t need to go to the doctor.

We joked that it was a good thing I didn’t run into her. I’d have used the line: “Thank you for your concern ma’am, but I have a child fighting cancer for the second time… I’m pretty in tune with when my kids aren’t well due to white blood counts dropping from chemo.” Yes it would have been the major guilt trip and wrong. But hey you want to tell me how to handle my kids and don’t know me from a hole in the ground… it’s open season 🙂 Kind of feel like a Bill Engval joke: “Here’s your sign…”

Jesse did complain about her head hurting. I’m not sure if that is from the antibody, diluadid, or low blood counts. The rest of the evening was luckily uneventful except for Jesse waking me 3 times to go to the bathroom. I’m glad though because it means system works 🙂

Day 55

Snow!! Sometime between when I looked out the window around 2am and 7am when I finally told myself I absolutely had to get up, it snowed! Yes I know there are people thinking, “Eew snow.” But it’s so wonderful to see it.

I medicated Jesse, cleaned off the car, went back to the room to get her, and off we drove to St Jude. The roads are covered with about an half inch of snow. It’s not a long drive from RMH to St Jude, and there was only about 5 other cars on the road.

The nurse in the medicine room wasn’t ready for us. And she was a little confused. It can be confusing. I get confused. I told her what I remembered from the other days, and I kept reiterating that until I could get her to understand me ( I was good. I reiterated it in a calm voice 🙂 ). She wanted to give Jesse the Tylenol 2 hours before the antibody started. I knew it was 1 hour before because Tylenol wears off in 4 hours (or less). She showed me the instructions left for her, and they matched what I remembered.

1. 8:30am Jesse to swallow the 2 Temolozide pills with glass of water
2. Wait one hour
3. Take a vial of blood for the research study
4. Take Benedryl and Tylenol in preparation for antibody HU14
5. Start one hour IV infusion of irinotecan
6. Take blood pressure and temperature
7. Start 4 hour antibody infusion
8. Five minutes after start, get blood pressure and temperature again. Then on the hour
9. One hour after antibody ends, draw blood to check for research study
10. Eight hours after antibody ends, draw another vial of blood for research study
11. Twenty hours after antibody ends, draw another vial of blood

We did switch this up because Jesse complained of an upset stomach. The nurse gave her the Benedryl early. Turns out that the Benedryl is a 24 hour lasting one… glad to find that out now on the day we are finishing. Also glad that I didn’t give her any Benedryl when we at RMH.

As the Benedryl was infusing, Jesse took her Temolozide pills and drank the water. After 30 minutes, she still mentioned her stomach hurt. She asked for Ativan. And it really helped because Jesse asked for muffins shortly after it finished infusing.

She told me she wanted cupcakes. So I ran to get her some and myself coffee. I stopped to speak to the gentleman who normally runs the grill. He comes in early to read and have a cup of coffee before his shift starts.

Because of the medicine Jesse has complained of being dizzy. She says her head still hurts, and her leg is a 3. She did take a few crafts off the happy cart, which she is working on now. They didn’t come with instructions… but she’s happily creating her own 🙂

We had to wait some time for the pharmacy to have the antibody ready. This means that if it goes well infusing, Jesse and I will come back at 11:26pm to get the 8pm blood draw. Not really excited about that, but it needs to happen.