I woke at 4:50am to the sound of Cummings diesel engine. Interesting enough it was the guy across from us. His dog had wandered over to our camp last night. He was obviously very uncomfortable… which made me nervous. He had made the comment that he was packing last night to leave. I figured that he was leaving last night… not at 5am.
The girls woke at 8:30am. Jesse couldn’t eat this morning because of sedation. For Christine, this is a hard concept to understand. I let her eat some yogurt.
The girls were raring to go so we left. I decided to go in the long way. This way I have a back way in case there is trouble on the interstate.I don’t plan to go this way again unless I have too. As we were making the last turn, our way was blocked by an accident that had just happened. Jesse began to worry we’d be late.
We arrived in the parking lot with 30 minutes to spare. But in searching for a place to park, it quickly became 15 minutes before our appointment. I had seen people park in the circle before. As I pulled in, a valet driver was walking by. He told me that he couldn’t leave the vehicle in the circle. And to go back to the gate I entered at, have the guard stamp valet on the tag, and bring the truck back to them.
After dropping the truck back off with the valet, we went into the isolation waiting area. The isolation nurse was out with another patient, so I had to call the radiation oncology clinic. And I messed up by calling the sedation portion. Because I called them, they started telling isolation they didn’t want to see us till 12. And isolation started saying they had nowhere to put us. And I started saying no one called to tell me that our appointments had changed… and everything on line shows an appointment at 10:30.
Luckily our clinician from D clinic was there. She called the radiation nurse, who came to get us. And when she arrived, she said they’d been looking for us because the radiation oncologist was ready to see us. Mind you I had arrived 10 minutes early for the appointment. Excuse me while I throw things…
The RO nurse took us to a room with a rocking horse. Jesse was on it immediately whipping her fedora like a cowboy hat. The RO (radiation oncologist) came in saw Jesse’s and stepped out to get his.
We talked briefly and then it was time to start the simulation. Because Jesse had to be in the CT machine for possibly an hour, she had to be sedated. The nurse and anesthesiologist were really nice… and finally after an hour the technician was ready to see Jesse.
When the technician came in, I asked how the process would work. It was then that I learned Jesse would be getting inked put under the first layer of her skin. I asked if it would eventually come off. And the technician explained that no it would not. They never used the word tattoo, but really that is what it is. She has 6 dots that look kind of like freckles.
While Jesse went for her CT Scan and MRI, Chris and I ran all over St Jude. We went by patient services to check Jesse’s mail. Thank you for the card Mt Pleasant Baptist Church. Jesse enjoys getting them 🙂
Then we went by security for a tag. I brought a different vehicle out here this time. The guard was worried I was pulling his leg. But I assured him I wasn’t, and told him that I would have my husband destroy the other one.
By 4pm, we were finally done. The kids were excited to head back to Jellystone so they could play.
On Tuesday, we hung around the campground. Since it rained in the morning, the kids were trapped in the camper. But by the evening, we could go down to the pool and playground. Found out from the people working here that Biscuit has been in communication with Jellystone. Thank you Biscuit, Cindy, and Mike. You guys are rotten 🙂
Wednesday, we relaxed until it was time for Jesse to have her practice for radiation. I am really trying to get her to do it awake. Jesse on the other hand is very nervous about this (mainly because she doesn’t know).
We arrived at 12:45pm. It took forever for them to get us from isolation. Mainly because they were trying to figure out where to practice. I really hope on Friday Jesse can see the radiation machine.
When they finally decided, the child life lady told Jesse she could pick out several books to listen too. They can’t put movies on a screen in the room because the machine blocks the view as it rotates. This often causes the kids to move their heads to see the screen.
Chris and I disappeared as Jesse walked into the room with the child life specialist. We took the old saline (not really “old”… St Jude has changed brands) to pharmacy.
As we returned, Jesse was standing in the hall. She was able to lay still for 15 minutes. I had forgotten to tell the specialist that Jesse would be on the table for 30 minutes. I made the mistake of assuming she would have a note with that information.
I pointed out to Jesse that she was at St Jude for a total of 60 minutes. If she has to sleep we will more than likely be there for 4 hours. I hope this is encouragement to get it done without sedation.
We returned to the campground, and I let the girls go to the pool. While they played I tried to get some work done. The staff here is very friendly. One lady came to hang out with Jesse while I tried to get the script done. I really appreciate their willingness to help me with the girls, but I also don’t want them to feel responsible for the girls. It is the reason I have a hard time asking people to watch the girls if I am going to have fun.
Chris was playing with an older lady in the pool. Jesse started to get frustrated about being stuck on the top step. And she lost it. I ended up making them get out and return to the camper where Jesse scream cried for another 60 minutes. Yeah. So wonderful.
I kept them in for the rest of the night.
Thursday morning we had several appointments at St Jude. First was labs. I asked the nurse if Jesse needed to give a urine sample. They told me one was not ordered. And I wasn’t thinking about getting a sterile one.
I gave the urine sample to the clinician at about 9am. She almost sent it as a sterile urine sample, which it was not. And this would have really caused a huge problem. The nurse practitioner stopped her and had her bring the sterile kit. I am glad in a way we botched the first sample. It is interesting that we get different nurse practitioners than our normal one, and they want to try and get Jesse out of isolation.
I asked the nurse practitioner about having a port put in Jesse. She felt it was fine at this point. When the doctor came in, I requested the same thing. He told me they were scheduling it for Thursday.
When he left, the physical therapist came in. He tested Jesse’s feet and asked her to walk around the room. He asked about the sensation that Jesse has been having in her heels. He isn’t sure that it is neropathy because she can walk on her toes. Most neropathy causes heel strike.
He did notice that she was pronating to the right. This could be caused by weakening muscles in her legs. And this pronation could lead to pain in her calves, knees, and on up the chain. He recommended that Jesse be fitted for braces.
We returned to the campground to discover that something is not right with our fridge. This is huge because of Jesse’s medicine. The campground staff was extremely nice to take the last dose and Jesse’s stool sample to their fridge.
I couldn’t get a hold of Mike until almost 5pm. He had me try to find the reset button on the back of the fridge, which I couldn’t. I must have touched something because on Friday morning the thermometer was in the right range. I have a repairman coming to look at it.
On Friday morning, I gave Jesse her last dose of ethanol.
We returned to St Jude for one more practice to hold still for radiation around 1pm. The parking lot was insane. The valet drivers had to park cars in the circle and along the wall into the parking garage.
Being in isolation is like being the kid no one wants to have anything to do with. I called radiation because they were our first appointment. After being transferred and put on hold, the nurse was on her way to gt us. When we arrived in radiation, the practice team was ready for Jesse.
The radiation oncologist was walking by as we were entering. He told us he had just approved Jesse’s plan. She will have 13 treatments, each lasting 20 minutes. This is good news, because Jesse can hold still for that length of time. And we will be able to leave on July 19th to head home! Yeah!
She saw on our schedule that Jesse had an appointment with physical therapy. She asked if we were going to D clinic. I told her this was the first appointment we had of the day, and I wasn’t sure. She said she would call and see. I told her I would ask because I needed to take a stool sample over to D clinic and ask about her schedule. The doctor had told me Thursday for the port placement, but the schedule is showing Tuesday (I don’t mind, just want to make sure I have the right information).
The nurse decided to call D clinic for me instead of us having to walk over there. I talked with the nurse about where we needed to go to meet the physical therapist. She told us either D clinic or A clinic, depending on who had room. The radiation nurse thought for a moment, then said why not stay here. And that does make the most sense. This way we “dirty” only one room.
At 1:30pm, Jesse returned with the child life specialist, who said she did an awesome job holding still. The nurse practitioner for radiation is concerned about how Jesse will do on Tuesday. Normally the kids have radiation first, then have surgery. This is in case they are uncomfortable and don’t want to hold still.
I am praying that Tuesday, they do the surgery by 10:30. This will allow Jesse to wake up. I can take her to get McDonald’s, then bring her back for radiation with a belly full and satisfied.
The physical therapist was supposed to see us at 1:30pm. Finally at 2:15pm, she appeared. She measured Jesse’s feet for the braces. These will be ones she wears in her shoes. Jesse is not overly happy about it. But when she got to pick out her design and strap color, this improved her opinion a little bit.
We returned to the campground. The kids played. Then around 8:30pm, I did Jesse’s last tape change (I hope it is the last). I had Chris tape it for us in case we ever needed that information again. It took me 19 minutes from start to finish to complete the tape change. Probably a good thing I have not been taping these because I would start racing myself.
Saturday, Chris woke me up complaining about her throat. I think she has what Mike had, and I am trying to get. If I can keep Jesse from getting it, I will be ecstatic. I need her to have this surgery so she can get the port and be free to swim, take a shower, even play in the dirt! Plus I don’t need to go deeper into isolation… I’d like to get her out eventually.
woof, woof! Relax & enjoy the downtime:-):-):-):-)