Day 18 at St Jude

Last night we had a nurse in training and her know-all-better-than-you-don’t-have-kids trainer… I know they need to learn, but there is something that makes me ubberly nervous with them involved. I know there are those out there that would say just request her not be your nurse. Yeah done that before… here’s how it works: they all are buddy buddy. You aren’t their buddy, they talk about you where they think you can’t hear them. Then the new nurse is really sweet to your face. (Learned that in PICU a few years ago when I requested that the nurse who didn’t give a crap over Jesse’s falling respiratory rate not be our nurse again.)

Hopefully she’ll “graduate” to another patient soon.

Jesse slept in till about 8:30am. She woke up this morning complaining of pain in her left side. The resident came in to see her, but Jesse really had to go. So the resident decided to come back later. The fellow doctor for infectious disease arrived. He told us that Jesse had E. coli in her tube. The good news is that the blood taken yesterday from her CVL and arm show no bacteria growth today. This means the antibiotics have taken care of the E. coli. The clinician came in while I was dressing Jesse. She got her weight: 16.6 kg (36.5lbs).

The other good news today is Jesse’s white blood count rose from 0.1 to 0.4. Her platelets are at 61, hemoglobin is 9.8, and ANC is still 0. The nurse explained that when white blood count starts to rise, ANC will start to show up.

Then the wound nurse showed up. She wanted to change Jesse’s wound bandages. I requested that they redo her nephrostomy tube bandages too. Right now the plan is to try to place stents on Monday if the tumor isn’t blocking the ureters too badly.

While Jesse was laying on her tummy having all this done, she lost it. She was wailing to go home. The nurse called Child Life to come. They all meant well, but they were coddling Jesse in trying to console her. And with Jesse that just makes things worse. Finally I said to her, “Listen to me.” So far this is very effective in getting her to calm down. I asked Jesse if she wanted to go home long term and grow up or go home to get sicker and lose the ability to be there to grow up. Harsh, yes. But this is the reality of what we are fighting. After this question, Jesse stopped wailing. And actually started smiling and playing with the Child Life specialist on her Ipad. The nurse (whom I love to pieces… she is just awesome) came in to let us know the doctors had scheduled Jesse for an ultrasound of her belly and a PET scan. Both are because of the pain she complained about this morning in her left side.

After finishing the tape changes, Jesse actually wanted to take a walk. Do you think that got to happen? (It’s been one of those days where everyone has been in and out of our room all day long).

The resident caught us at the door. She examined Jesse standing up. The discharge nurse caught us to warn me that since Jesse was 1kg (2.2lbs) lighter than when admitted the nutritionist would be coming by. And that she was going to advocate for TPN, IV nutrition. I don’t want her on TPN at all. For one, TPN can grow bacteria in her line (don’t need that), and two it’s not good for her liver. I am very thankful that she warned me this was coming down the pipeline.

While we were talking, Jesse asked for a wheelchair. I had Jesse tricked into walking to the gift shop when the ultrasound ladies wheeled their machine up. They had been in ICU doing an ultrasound, and it was convenient for them to stop by then. So much for the walk.

I talked Jesse into ordering food while they scanned her belly and back. It didn’t take them long, and as they finished her food arrived. Jesse ate 3/4 of a slice of pizza. Then she played with her dollhouse on the floor. As she was playing, I decided to reorganize and rearrange the room. This room is small.

As I had everything dumped on the floor, another doctor and research nurse stopped by. Thankfully they agreed to return around 1pm. (Plus Jesse was on the toilet… which made them uncomfortable to bother her. Jesse has probably reached the same point all pregnant women reach while in labor. There is no privacy in a hospital.)

The attending doctor and fellow dropped in next. They said the same thing about the ultrasound and PET Scan I had heard earlier. They were happy that her swelling was less.

Then her main oncologist came by. He doesn’t feel that Jesse needs a PET Scan because to him it won’t show the difference in tumor and infection. And he strongly feels that all of what is showing is tumor. And as of tonight, I haven’t heard if we are having a PET Scan or the results of her ultrasound.

Next was the nutritionist. I told her no on the TPN. She then suggested an NG tube down her nose – absolutely not. Luckily the discharge nurse had reminded me about the peractin (cyproheptadine). Good old cyproheptadine. Jesse took it during radiation to increase her appetite. Taking this and increasing Jesse’s IV fluids to full maintenance from half maintenance satisfied her for the moment. Jesse took her first dose of cyproheptadine at 3pm today… and by 4pm she’s out. Hopefully in the next few days, she’ll get used to it and not be snowed 🙁

Plus we switched her pain medicine to oxycodone late yesterday. I think this has made a significant change in her mood. She has been smiling and laughing today more than I have seen in weeks. And she climbed into the big blue chair in our room by herself.

Jesse was supposed to have her IL-2 and GM-CSF shot at 12. We asked her how she wanted it – she choose straight again. Amazes me. The nurse went to get it. Thank God she pays attention. She noticed it was expired, and let me know she’d contacted pharmacy to send up a new one. By 1pm still no shot.

At 1pm, the new doctor and research nurse arrived. Since Jesse had E. coli in her CVL, she is eligible for a study called “Ethel”. This is a double blinded randomized study to see if ethanol (alcohol) when allowed to sit in the CVl for 2 hours will break up the biomedical film that can develop in the line. Since Jesse has had an infection this time, she is now at an increased risk of getting another infection. And that biomedical film can allow certain bacteria a place to hide and grow.

Jesse’s two shots arrived while I was reading the information for the study. Jesse screamed briefly, then asked to place the band-aids.

I signed Jesse up for the study. If she gets the ethanol, bonus for her. If not, we help future kids. If she doesn’t get it, we won’t know. They will give us saline drawn to look like the ethanol would. The nurse will put this in her line, let it sit 2 hours, remove it, flush with saline, and lock with heprin. They can’t just flush it through because it’s ethanol, and when mixed with heprin it can cause the CVL to clot. If it clots, we’ll have to use TPA to break the clot.

Jesse is either number 53 or 54 in the study. It will not end until 132 kids have been in the study. Results will be released either on St Jude’s website or in journal articles. Jesse will be in this study for 6 months, then an additional 90 days if her CVL stays in that long. If the CVL is removed before 6 months is over, they would like to have it for pictures and study. If the CVL is removed and replaced with a new one, then Jesse is out of the study. They only want to follow this particular CVL.

As the research nurse and I were finishing the paper work, the social worker popped in. She apologized and said she’d come back.

I asked Jesse if she wanted some popcorn. We order her some, but she only ate 2 bites before saying she was full.

About 3pm, the line nurse came to measure Jesse’s CVL to know how much ethanol she’d need for each line. She wanted Jesse to get in the bed, but Jesse refused.

Around 3:30pm, we went down to check the mail. This seems to be her highlight of the day. Thank you everyone who sent cards. Jesse really enjoys opening them and having me read her the cards. 🙂

Around 4pm, she was out. I shifted her to the bed about 5 so I could go grab a bite to eat.

She woke briefly to face time with her dad, sister, and neighbors tonight. Really good to see everyone. She talked briefly to grandma, then was out.

Jesse’s hair is really falling out now. If you do see her anytime soon, please don’t make any comment about it. I have a feeling that this will become a sensitive subject in the days ahead. And it might be best to just act like she has hair and is no different from anyone else. She did tell me she wanted to cut her hair today, but I have no way of doing that here, and don’t know if I am allowed to. If Jesse asks me to shave my head with her, I will do it. But I will wait for her to ask because last time I did it, she wasn’t overly happy with me. And strangely enough the only thing she really remembers from her first battle with cancer was me putting her in the tub and shaving her head.

Good news tonight, we don’t have the horrid nurses 🙂 I really like the nurse here tonight. We are waiting on the ethanol (or placebo) to come up for the first time. Pharmacy and Jesse’s name aren’t mixing well today. They were supposed to have it up earlier, but according to the study doctor, pharmacy isn’t prioritizing his study.

When they do put it in Jesse’s lines, it will have been done one line at a time. She will have to have vitals every 30 minutes. And then 15 minutes after the ethanol (placebo) is removed. The process will take 4 hours and 15 minutes. The nurse is thinking of ways to combine other things so that she cuts down how often she bothers Jesse. I really like her thinking 🙂

Please say a prayer tonight for a family I saw standing in the hallway as I was walking to get Jesse some water and ice. I don’t know what is going on (and don’t need to know). The look on their faces was devastating and so hopeless.