Jesse woke up before I did this morning. I am exhausted, so I slept a little longer with her sitting next to me in the chair.
Around 8:45am, I started to wake up. The nurse came in with the news that Jesse’s ANC was 700! Glad I was wrong on that one 🙂 Her hemoglobin had also climbed to 8.3 on it’s own. The rumor had been release when her ANC reached 500.
The nurse practitioner stopped by next. She confirmed that the plan was to talk about releasing Jesse in rounds this morning.
After she left Jesse asked for pancakes. The nurse asked that I let her know when the pancakes arrived so she could give Jesse her morning medicines at the same time. When she came in I asked her about the dental visit Jesse had scheduled. She left to make some calls about it.
At around 10:30 a man who does patient transportation came. He walked us to x-ray for Jesse’s dental x-rays. She was scared because she was unsure of the machine. We explained to her how it would work. The technician lowered it to her height. Jesse did a great job of standing still while the machine circled her head.
From there, we went to the dental clinic in C clinic. Strangest thing… I think the door for the dental clinic is the only door I have encountered at St Jude without a handicap button, save for patient rooms.
The dental assistant was surprised to see us. She said she had rescheduled Jesse’s visit because of her low ANC. Think she forgot to notify the department that keeps the schedule I can see online updated. Since this was the second time we have rescheduled this appointment, I asked if she could half be seen. She agreed saying that they would only consult today and count her teeth.
I explained to her that Jesse has 9 silver caps and 4 veneers because of chemo in 2011 when she was 2 years old. She basically entered the information into the computer and let the dentist know Jesse was there.
The dentist counted her teeth. From the x-ray I could see she has teeth growing under her current baby teeth. Mike and I have been concerned about how these teeth will form. We have also been concerned about whether or not Jesse’s baby teeth will fall out on their own. The dentist told me that until they form more we won’t know. From the way he talked, it sounded like the chemo and radiation might interrupt the formation of some of her teeth.
Jesse does have molars coming in behind caps. The assistant asked Jesse how often she brushed her teeth. I was quiet and let Jesse answer. At first she said one time a day (which isn’t true…she does brush twice a day most of the time.) Then Jesse told her twice a day.
I did really good keeping my mouth shut while the assistant gave the “You should brush twice a day, no sugary drinks or food speech.” I would have loved to ask her for food recommendations when I have nutrition breathing down my neck over her weight (which was 15.5 kilograms this morning)… and she’s not interested in the food that is served at St Jude. I also wanted to ask her how I was to get Jesse to stay away from sugar when it is added to so much of our food to make it more appealing. And right now her taste buds and smell are all jacked up thanks to chemo.
Sometimes I wish these people had to spend time taking care of a child with cancer. Not that I want them to suffer, but to empathize with all the feelings. I already feel like I failed her in the gene pool. Combine the gene pool guilt with watching her having to undergo treatment twice with drugs that are extremely harmful makes you feel like you have totally given your flesh and blood the short end of the stick.
The dentist did agree to paint on some fluoride that lasts a month. And when we return next month, maybe he will seal Jesse’s exposed teeth. We’ll just have to see.
After that Jesse and I returned upstairs. Since I had work that needed to be done, I asked the nurse when we’d be discharged. She told me it would be after 2pm. This gave me plenty of time to do what I needed to do.
I ran to the cafe to get some lunch and a drink because I hadn’t had time for breakfast this morning. Then I ran back to the room to be on our weekly webinar. And of course at that point in time everyone and their uncle decide they had to see Jesse. I love how that always happens… not. I need to learn how to stifle the I’m busy signal to the universe because it seems to draw them in. Maybe if I send out the I really have to see you now signal it will repulse them.
First to stop by was the clinical pharmacist to go over the medicines we have here at RMH. Turns out I need more neuronton for Jesse because for some reason I stuck it in the cabinet instead of the fridge last time I gave it to her. And therefore it’s no longer good. Why I did that I’d love to know.
Then the doctors all stopped in. Since she looked great they didn’t hang around. The attending did compliment me on how well behaved she is. I told him he didn’t live with her. But I do appreciate that he thinks she is a good kid.
Then the take home/ IV pharmacy lady dropped by to get a consent form signed to send Jesse meropenem eclipses to the RMH. She will be on meropenem through February 6. This is cool with me. I love the eclipses. Flush her with saline, attach the antibiotic for it’s time period, flush with saline, and heprinize. Easy peasy.
Then a volunteer stopped in. She asked if Jesse wanted to go paint, then proceeded to tell me she could only paint with her for 20 minutes because she was helping another child. I actually let Jesse go with her. I figured if anything Jesse would give her a run for her money 🙂 And I took the opportunity to finish up what I was doing.
At 2pm, the nurse put the meropenem on Fred. I ran out a load to the car.
When I returned, Fred was getting ready to beep. We notified the nurse, who put a flush on the line. While this finished, she got Jesse’s shot and ethanol/placebo together.
After 15 minutes, we hadn’t seen the nurse. I needed to call my boss to talk about work. I figured I would seize the moment to talk with him since we were molding. Lo and behold the nurse appeared just as I called him with shot in hand. This of course sent Jesse into orbit.
Jesse asked that I give her the shot all while yelling for me not to hurt her and that she was too precious to hurt. Once the shot was done and ethanol put in, we headed to pharmacy to get her CT contrast for the scans and GM-CSF shots. I am really hoping that tomorrow morning’s lab work will say ANC is 2000. This means Jesse is done with GM-CSF shots for round 2.
I despise the way they do contrast here. At CHKD, they push it through the lines. Here she has to drink it. Once at 7am and another at 8am. Last time she did this, she threw up. I plan to give her zofran at 6am to hopefully help the contrast stay down. This just seems like added torture to have kids take the contrast this way.
Jesse and I then went to the mail room. Thank you John, Beth, and Alex for the books. Jesse loves the pictures of the horses 🙂 Thank you Ronnie, Jennifer, Graham, and Blake for the markers and Doc McStuffin books. Jesse was really excited to read them 🙂
Jesse was so excited to go through the annoying turnstile door and into the sun. It felt so good. She laughed at being outside in the sun and having escaped.
When we arrived at RMH, I noticed the door to our room was not locked like I had locked it. But being that I am occasionally ditzy, I thought maybe I had screwed up. I set Jesse on the bed and was getting ready to head back to the car for our suitcase when the phone rang.
It was RMH front desk with a package for Jesse. This package was her meropenem that needed to be refrigerated. Once that was in the fridge, I went for our suitcase. When I returned to the room, Jesse asked me to throw away a piece of paper. As I went to throw it in the bathroom trash can, I noticed a blank piece of lined paper in the can. Really odd because I know I don’t have that kind of paper here and wouldn’t have thrown it in the bathroom trash can in the manner it was.
I put the paper the rest of the way in the can, then started putting away mine and Jesse’s clothes. As I pulled my drawer open, I realized all my clothes were askew as if someone had searched through them. I immediately called the front desk, who put me in touch with the house manager.
Supposedly maintenance had been in the room today to fix the handles on the drawers and cabinets. She apologized saying they should have been neater in their work. In my opinion, they should have had a note in the mailbox or one in the room. Especially considering that in the mailbox was a note about people stealing other people’s food, and on the phone there was a message about someone stealing another person’s entire load of laundry.
The laundry incident happened over the weekend. A family started a load, then had a medical emergency and had to leave. They were using the downstairs laundry (I use the upstairs one because it’s right outside the door), and now can’t find their clothes.
Jesse told me she was hungry when I got off the phone. We went down to the kitchen to make dinner. She took two bites and said she was feeling sick. I think something that someone else was cooking got to her.
She did claim to be well enough to check the mail here. Thank you Ms Collins for the card and note. Jesse really enjoyed going to get the mail here. I am thankful we made it back to the room without getting sick.
Back in the room she asked to call her sister and friends. She wants to see them so badly because she wants to be with them. During the call she had a really bad breakdown of wanting to be at home clearing the driveway and sledding in the snow. I keep explaining to her that if we return home now, she has an increased chance of getting sicker. And while this is 6 to 8 months, it is only 6 to 8 months of a lifetime. And we are trying to make her lifetime long.
After getting off the phone, Jesse complained of being cold. I took her temperature: 98.1. She is sleeping now with her eyes half open (freaky how that child sleeps like that). I am getting ready to give her the 10pm dose of meropenem. The next dose will be at 6am.
Do not ever go with Samsung Galaxy S4… horrid excuse for a phone. I have to restart it to connect to my hotspot lately. And I need it because RMH blocks Jesse’s site for some reason. Will have to explore that further one day.