Day 8 at St Jude

Thank you everyone for the comments.  We have really appreciated the positive thoughts, prayers, cards, videos, and words of comfort.

Jesse awoke at 4am. She was running a slight fever, but she wasn’t drowsy. Since we were both awake, I went to grab a shower. Parents can’t use the bathroom in the kid’s rooms here. The reason is a really good one because of putting the kids at risk for germs. Parents have a separate room right next door with a bathroom and a couch to sleep on if you want.

My aunt commented that it would be nice if they had a shower in that space. It would be, but unfortunately some people can’t clean up after themselves. By this I mean they leave towels laying in the floor… wet towels grow bacteria. When your neutrophils (white blood cells that divide fast to fight infection) are wiped out by chemo… you have nothing to fight off bacteria or viruses or fungus. ( Which this reminds me of a question I want to ask the doctors about protecting Jesse from yeast infections). And to me that is probably why there are no showers in the parent area.

The one shower up here is down the hall with the laundry room. Every time I have gone in them, someone has left towels and wet wash clothes laying in the floor… even with a sign that says: “Please put your wet towels and wash clothes in dirty linen container.” The container isn’t hidden… it’s right next to the sign.

Last night I saw a girl walking around the floor barefoot. I wanted to ask her if she was concerned about what might have been spilled on that floor. But that’s not my business.

I also started a load of laundry. In the 15 minutes that I was gone, Jesse freaked out about when I was returning. I even told her I was going to grab a shower.

About 7:30 an optometrist nurse came in to dilate Jesse’s eyes. She wasn’t overly thrilled.

Around 8am, Jesse started coughing and crying that her throat itched. They gave her a drug like benedryl, but without the drowsiness. In 15 minutes she was better, and wanting to take a nap.

At 9am, the optometrist came to shine a light in Jesse’s eyes and check the backs. Thankful everything there was okay. He told me that the antibody may cause Jesse to have blurry vision up close. This could last 6 to 9 months after the antibody is complete. If so, then they will fit her for glasses. Blurry vision we can fix with glasses, I can handle that.

At 9:30 we began day 4 of chemo. Since they pre-medicate her, she asked for a donut, chocolate milk, and strawberries. She ate a few bites, then was full.

At 11am, the antibody was started. Since Jesse had trouble yesterday, they ran the antibody at 5ml for 8  hours instead of 10ml for 4 hours.  Jesse and I settled in to wait the 8 hours by watching movies on Disney.

The doctors stopped by to look at her. The resident is nice, but I wish she’d look me in the eye when she talks to me. I am not sure if I make her uncomfortable or she feels bad for us.

Jesse asked to use the bathroom saying she had to go #1. When we got her out of bed, we noticed the right bag had barely anything in it. Needless to say I felt very concerned. The doctor came in, saw the bag, and called the radiologist’s nurse.

The discharge nurse stopped by to refresh my memory on giving shots. At first I thought she was the radiology nurse. And I got her to re-tape the second loop in Jesse’s nephrostomy tubes.  At first she treated me as a first time parent or that she thought I was missing some marbles. On the marbles she is probably spot on. It is getting a little annoying that from some people I get this vibe I shouldn’t be left alone with my kid to do medical care. But I do understand that they have more than likely seen parents that shouldn’t be left alone to do medical care on their kids.

I explained to her what we had to do before. This changed her mind about me. Plus she witnessed Jesse having a mini-meltdown due to the morphine and getting stuck on whining. The line I sometimes use with the kids when they whine in a voice I can’t understand: “Sorry I don’t speak whine” or “Sorry I prefer to drink my whine.”

I will have to give Jesse IL-2 shots every other day and GM-CSF every day starting on Day 7 of this treatment cycle (we are on day 4 of the cycle). IL-2 is a drug that revs up the immune system. When Jesse had it during ch14.18 antibody, they infused it into her body at a rate of 5ml/ hour. This took a week, and we spent it in the hospital. Now they have a shot version. I am not sure Jesse will be excited about this, but I am glad we won’t have to deal with a big pole and IV line for a week.  The GM-CSF will help her increase her neutrophils.

She told me that her older patients found the LMX numbing cream to work better when they let it sit for an hour. She also said I could let the serum to sit out in the syringe for an hour to warm up as long as it was not in direct sunlight. I forgot to ask if I the shots had to be given at the same time every day. I think with GM-CSF before, we had to give them at the same time every day. But this protocol might be different.

As we were talking, Jesse began to cough. I asked her if her throat itched. She told me no. We called her nurse, who stopped the antibody to talk with the doctors.  The doctors decided to give her medicine (hydrooxydone… I think that is what I saw on the tag), let her stop coughing, and resume the antibody. After an hour Jesse was still coughing like she was trying to get something out of her throat. I kept asking her if her throat itched. She told me it tickled, but didn’t itch.

The doctors decided to see if she could not cough for 30 minutes. If she could, then we’d resume the antibody at 5ml. Then they came back and decided to stop the antibody for the day to give her body a break. Tomorrow she will have Zantac added to her premedications to help with the cough. I asked the nurse that since we had all the premedications on board could we change rates from 8 hours to 4 hours and try to get her through it faster. I am not trying to get out of the hospital earlier… it’s not like I am running home to spend time with Chris and Mike.

Then the radiology nurse stopped by. She was super excited that the discharge nurse had fixed Jesse’s right bag. The trouble was a kink in the line. And since then her bags have put out a great amount. I need to figure out a way to create a belt for her that would hold those bags next to her body securely and comfortably. Right now… that is not the case.

After she left, a research nurse stopped by. She gave me a yellow folder that I will need to bring to clinic every time. In it I will mark when I gave her the shot and who gave it.

As we finished talking, the doctors (3 of them) returned. They told me that Jesse’s oncologist is out of town, but they talked to another doctor who preformed another version of the protocol. This doctor said that a cough itself was not a sign of anaphylaxis and felt that we should finish the remaining 4 hours of antibody. They also feel that Jesse should be premedicated and given the antibody over 4 hours tomorrow.

Jesse fell asleep after the coughing fit, sleeping for 3 hours. The nurse took her temperature at 4. Around 5, I thought Jesse looked warm. I asked her to take Jesse’s temperature: 103.5F. At 4pm, she’d been normal. We gave her Tylenol and cultured her lines.

Right now we are waiting for pharmacy to remake the antibody. The rumor is Jesse will start infusing again at 8 or 9pm. And if she coughs to medicate her, keep listening to her to make sure she isn’t wheezing, and power through the antibody.

I will say with this one she has not bloated like the ch14.18.

I have to giggle at her (not in front of her. Lately she takes my thinking something is cute as equal to laughing at her). She wants to watch Scooby-Doo. We’ve watched all three episodes they have several times. Every time she screams at certain parts. We ask her if she wants us to change the channel, and it’s always no.

I talked with Mike earlier tonight. He told me that Chris asked when we would be able to come home. Mike explained to her that we might be here till June or August. He told me that she is having a really hard time with this new knowledge and the fact we won’t be there the rest of this year.