Day 57 & 58 at Stude Jude

Day 57 at St Jude

Jesse and I headed over to St Jude about 9:30. Her first stop was school. Jesse was excited to participate in class again. While she did that, I checked the mail and took it out to the car.

Jesse was feeling pretty horrible yesterday. This new chemo has socked more of a punch on her than the cyclo/topo did. And because of this I really wanted to hang onto the IV bag. When I had talked with our main nurse practitioner, she didn’t seem to want Jesse leaving with the fluids. I had tried to get her to give me reason why she didn’t want to continue them. But she didn’t.

After class ended, Jesse was due to have labs drawn. We went upstairs to wait; 30 minutes past our appointment time I got concerned that maybe I forgot to check in. I went to ask the triage secretary. We hadn’t; they were just swamped.

Jesse was called back shortly after that. Her weight was 15.3kg (between throwing up and no interest in food… I’m not surprised.) Her blood pressure was high. I think this nurse had to stick her before the CVL was placed, and Jesse associates her with that. Her labs were a surprise through. She is holding at 8.2 for red blood, ANC is 4400, and platelets are 384.

When we were done, I asked Jesse if she wanted food or drink. She did choose getting a bottle of Brisk tea. Unfortunately the machine had other plans 🙁 I got our money back once, but when it took it the second time, I said forget it.

Because we were 30 minutes late in triage for the labs, Jesse’s appointment in D Clinic was pushed back 30 minutes. While we were waiting there was a young boy (2 years old) all over the waiting room. He kept gravitating to Jesse, but she wanted nothing to do with him. I think she sensed that he was looking to cause trouble. She was right because he whacked another kid in the head with a hammer. He managed to clock her right at the location of her biopsy. She is 2 and recently diagnosed with rhabdyscaroma.

The parents did the horror and sorry and it’s okay dance. I noticed that he disappeared shortly after that. His mom talked to me about his diagnosis: splitzoid melanoma in his leg about a centimeter. Hopefully surgery will take care of his. The little girl he hit has a 5 cm tumor in her face and is looking at chemo first. She already has her CVL in place.

At 1:30pm, Jesse and I were called back to see the doctor and nurse practitioner. I talked with the clinic nurse about keeping the IV fluids. Her comments about it sounded to me like she felt it was a good idea. I also asked her about changing Jesse’s claves every 96 hours because she has fluids running. When she is inpatient, they change the claves every 96 hours. She did tell me that I didn’t have to do that. Jesse interrupted us to say her stomach hurt. I’d given her zofran at 7:30 and Benedryl at 9am because of stomach pain.

I think she went out of the room to get the nurse practitioner to order the zofran because the nurse practitioner came in saying we’d asked for it. No I didn’t. Then she had to leave to cancel the order. Fifteen to thirty minutes later she returned making some whiny comment about “You guys thought I’d disappeared.” I bit my tongue. I detest comments like that. Especially when said in a whiny tone. There is something going on with her. Not sure if she has decided that I am a problem or a personal matter. Either way something has changed since we first met her.

I reiterated again that I wanted Jesse to stay on the fluids. I felt this was really important even though Jesse has told me several times that I have no idea what it is like to lug around that book bag and be attached to something and have no freedom. (And yes this is the part where those of you who have witnessed Jesse’s interaction and attachment with me can laugh). I looked at her each time and told her, she needed the fluids and to get over it.

The nurse practitioner agreed to let us keep the IV fluids. I also requested to get rid of the diluaded and back on oxycodone. The oxycodone seems to be more effective for Jesse. Since Jesse used such a small amount, the nurse practitioner agreed. I joked with Jesse that she was loosing a brick and getting her water source replenished. (This comes from doing a GoRuck challenge back in June. Plus Uncle Jim joking on Facebook when he saw the picture of her ladybug bag.)

Jesse’s main oncologist actually came to see us in clinic. I was highly surprised considering that he is the attending on the floor this week again (they seem to do 2 weeks here). I asked him if Jesse would potentially start Round 4 around February 28. He said it would depend on the meeting of the transplant team on Wednesday. I asked because Mike and I had talked about Jesse and I flying home between round 3 and 4. However with Mike and Chris coming so close to February 28, I don’t see a reason for us to fly home.

I have been talking with Jesse about waiting until after Round 4 to fly home. I think it is crucial that we pound on this tumor as hard as we can and try to catch crucial areas of the cell life cycle possibly. I don’t think Mike is happy with my choice, and I totally understand that. He told me the other night that the house just feels empty without us. I understand, it feels the same way at RMH without him and Chris.

The oncologist was okay with this. Even saying that we might get longer to be home before we have to start round 5. I won’t hold him to that… and we might just say give us 2 full days. I would rather sock this tumor hard and loose 6 months in Virginia to buy more time with Jesse.

After he left, the nurse practitioner returned to say we had an appointment in the medicine room at 3 (it was 2:30pm) for them to teach me how to disconnect the IV fluids and get new fluids. We checked with pharmacy before we left to see if her medicines were ready. Since they weren’t, we opted to come back and get all of them at one time. Boy am I glad I did that since some needed to be refrigerated.

Jesse and I checked in at the Medicine Room. I figured it would be at least a two hour wait. The nurse practitioner told me it would take 2 hours for the bags to fill. We amused ourselves by people watching and joking. There was a cute little boy in the room. I’d cut my eyes at him and he’d smile. Did catch him with a glove in his mouth one time, but talked him into throwing it in the trash. I think he was maybe 18 months?

At almost 6pm, we’d heard nothing. Jesse fell asleep because she felt like crap and was tired from waiting. I went into the Medicine Room to see if I could find out what was going on. At the moment I walked in, the nurse realized the orders had never been put in.

She had talked to the nurse practitioner about the orders, looked at the computer, and misread. She accidentally confused orders from February 3, 2014 as being the ones for today. The nurse practitioner never actually sent the orders over. This nurse in the Medicine Room was going to have to call a resident to get orders. And being a resident for the whole hospital, she’d have to wait for him to call back plus explain the situation to him.

Amazingly he called while we were standing there. He got the orders done quickly. Pharmacy told the nurse it would take 10 minutes to make the IV bag. She was very apologetic about our waiting. I am not upset with her. I am really upset with the nurse practitioner. This is the second time she has done this to us. First it was the getting the basal diluaded rate turned off, and now fluids. If she didn’t agree with me about keeping Jesse on fluids, at least give me a reason so I can weigh your reasoning with my own. Believe me, I won’t follow your decision blindly… I will ask questions.

Finally at 6:15, we were called back to get the new fluids and be trained on how to unhook the fluids. The nurse who trained us was also the one that Jesse took her picture with the other day.

We left them to get Jesse medicines. I had asked for refills of the zofran, bactruim, and mouth wash. The nurse practitioner had ordered her oxycodone. And for the GD2NK study we need the IL-2 and GM-CSF. Plus the ethanol for the Ethel study was ready.

I think the other reason that waiting for 3 and 1/2 hours on IV fluids really made me angry was needing 4 hours on Monday to complete the Ethel study. Since we have fluids running, I have to do one line at a time. The ethanol or placebo has to sit for 2 hours in the line before being drawn out.

I got Jesse back over to RMH a little before 7pm. I got the Ethel study started (it was 11:30pm before I finished it last night). While I was waiting, I washed Jesse’s coat and boots. Right as I got her in the room last night, she threw up. She threw up again when I flushed her line. This irinotecan and temolozide chemo is kicking her butt. They had told me not to expect as much nausea with these as cyclo/topo, but I am having my doubts.

Day 58 at St Jude

Well actually at RMH 🙂 We didn’t even leave RMH today. I took the time to clean the room. I missed cleaning on Saturday ( I like to clean my house every Saturday… it’s a habit… and I don’t feel better until I do). The room was getting to me. I think it would have passed RMH’s inspection, but not mine. I have cleanliness issues.

About 11am, my phone rang with a St Jude number. It was the nurse practitioner calling to apologize. Then she told me that I should have come over to clinic to double check the orders. Let’s see… appointment for the training is at 3pm… you told me it will take 2 hours to make the IV fluids… that makes it 5pm. Gee I wonder where you are headed at 5pm? Maybe to your nice cozy couch… and a kitchen that you don’t have to share with other people.. or to the grocery store because you can just flip in and out with no worries of someone getting sick.

I did tell her I was concerned because this is the second time she has done this to us. Her excuse was that she got distracted trying to figure out which doctor was going to sign us out. I think from now on she’s going to get double questioned from me. I know we all have moments and make mistakes. But the way she has been treating me on top of other things going on makes it hard for me to fully trust her.

We decided to schedule labs for tomorrow in addition to Thursday’s labs. I have a feeling that if Jesse doesn’t start eating more they are going to push the TPN on me. I am not willing to push food though. The nurse practitioner did order Jesse zofran in the eclipses to take. And I have given her peractin today.

Jesse has wanted to eat more today, and we only had one episode of violent ralphing. She has been drinking more on her own too. But she has started the diahrea I was warned about so we have a new medicine that has to be given every 3 hours (every 4 hours at night) : loperamide. Who makes these medicines? Why isn’t there a version that last every 12 hours? And if there is, why can’t we have that one? Yes selfish that I want to sleep through the night… I could be like that poor woman Mom met at the Grizzly house. She had to give her son medicine on the hour every hour. She wasn’t even planning to go to sleep that night.

And the more I have thought about it today, I am going to ask about pill versions of everything Jesse is taking. She can swallow a pill. Why make her suffer the taste of these drugs if she can have the pill version?

Jesse has spent the day laying around, picking at her eyelashes (They are falling out and into her eyes). She has yelled at the RMH phone when it went off every 3 hours to announce the shuttle to Kroger and Walgreens. She did tell me one time when she went to the bathroom that one brick and a water source was easier to carry than 2 bricks and a water source. I got the biggest kick out of that.

The eye glass maker called. Jesse’s glasses are ready for us to pick up tomorrow. I’m actually surprised. The owner is very sweet, but very confused.

We tried to go down for dinner, but the smell in the dining room was making her sick. So we returned to the room quickly.

Jesse did eat on of the push lollipops from Danielle, Sergio, Sullivan, and McKenna. She loves that they are watermelon. Thank you for the Valentines cards.

Thank you Barbara and Alan for the sticker book. Jesse loves it and played with it awhile last night.

Thank you James City 911 Center for all your goodies. The cup has been a big hit and helped get Jesse to drink more today. Thank you.