Yes I am easily distracted on getting posts up. Hard to write when Jesse is saying “I’m hungry” every 5 minutes. She takes 2 bites of things, then puts it down. Combine that with Chris’ whining about this and that, it gets hard to think. No worries, I will break her of that horrid habit. And if not she will spend a lot of time alone in her room.
Tuesday, Jesse started radiation. That has been progressing really well. I don’t walk back with her to the radiation room because I don’t want to be an obstacle in her completing the treatment without sedation.
The treatments take 20 minutes. On Wednesday, we left afterwards. It was a little frustrating though. We arrived at 1:45pm because Jesse’s appointment was for 2pm. On arrival, they ask if we can leave and return at 3pm. No we can’t. I understand there might have been issue, but I find it very rude to be inconsiderate of my time.
Around 3:30pm, I went out to ask if we’d been forgotten. I was told 10 minutes more. When the ladies came to get Jesse for the treatment, I stressed to them on Thursday they could not be late because she has surgery. They told me to be at St Jude by 8am.
And on Thursday, we were. They did take her back at 8:20. Her table time was 8:30am, so I am not upset about this. Chris asked me for food once Jesse left the room, but I told her Jesse would not be gone long enough to go get something.
After the treatment our schedule had us bouncing to see D clinic, then returning to Radiation. Of course being in isolation, this bouncing just causes us to have to listen to employees complain about gowning up and walking to another area.
Isolation wouldn’t be that bad if employees didn’t make you feel like you were the biggest inconvenience on the planet. Sorry she has super bacterias that were created by the antibiotics given to help her the first time.
I talked with the radiation clinician. She was able to get the radiation doctors to see us before we moved. The radiation oncologist is a nice guy. Has to hug me every time he sees me… not really sure why.
The meeting was short. And the nurse told me about a cream she has ordered to help Jesse’s skin from getting too dry or burned from the radiation.
In D clinic, they were actually rolling. Our regular nurse was back from her vacation. She grabbed Jesse’s last blood draw from her CVL. We turned in the sterile urine sample. I had already given them the sterile stool sample. Really hoping that someone will let this child out of isolation for maybe the last week and a half we have to be in Memphis. (We have 12 days until Mike joins us… and since we gave them the sample on the day before July 4th… testing probably won’t be complete until Thursday of this week.)
The nurse practitioner came in next. And true to normal form she had no clue what was happening in Jesse’s treatment. I have determined that she is good for ordering medicines, and that is it.
The main oncologist actually came in on time. He assessed her and left. I wonder if Jesse had been a huge cure success, how he would treat us.
Then we had to wait 2.5 hours for surgery to be ready to take us. And once at surgery, we had to wait another hour. I do appreciate Apple inventing the iPad.
When Jesse went back to surgery, I took Chris to get something to eat. Amazingly she was far more patient than I thought she would be. The nurse from the OR called to let me know when they started and ended. I really appreciate that. He also let me know that everything went really well.
Chris and I had to wait about 30 minutes before we could go to the PACU once the surgery ended. While we waited the line nurse came to see us. I think she is the supervisor because she had been involved when I raised the ruckus over wanting sterile tape changes for Jesse.
She told me that Jesse can shower after 10 days. But she can not submerge the port for 21 days. They want time for it to heal because if it gets infected they will have to remove the port. I don’t want that to happen to her. As long as she can swim when we get to Chincoteague, I will be happy.
The insertion of the port was basically the surgeon inserting it into her jugular or sub-clavical veins. Then they run it with a wire to her superior vena cava, a blood vessel near the heart. The port is stitched under the skin leaving a small bump. The line nurse told me some patient refuse to move their arms and complain of pain afterwards. Jesse did complain of pain, but she hasn’t stopped moving the arm at all. I have had get after her to not pull, push, or lift things right now.
Jesse wasn’t fully awake, so I took the opportunity to run to pharmacy and take home supplies to grab the things she needed. When she did wake, we got a chance to see the new site. It looks to me like they just yanked the CVL out. She has a red dot in her chest where it once was. I am so glad she was asleep for that.
The port is inserted on her right side, and higher than I thought it would be. It is actually almost at her shoulder. I wish now I had asked if they used her jugular vein or her sub-clavical. It is covered with a white gauze bandage. We will get to see it tomorrow. And once we see it, I will need to clean the site with betadine for 7 days morning and night.
By 3pm, we were out the door.
Friday, we hung around the campground. They had a shirt tie dying activity and a parade. The girls shirts turned out awesome. Then we tried to watch fireworks from our camper. We did see some, but Jesse had reached the “I’m done, and because I am done, you are done whether you want to be or not” point. Can I tell you how much I love that point?
Saturday, we ran to the store to get some things to make for the potluck dinner. Brown rice noodles work really well in Mike’s pasta salad. Chris had some drama with a girl here in the campground. There are a few girls that are 8 years old. They have walkie talkies and basically run the campground with no supervision. And one of them is on a power trip, and Chris got whiny over singing karaoke with them. And now I am sure she has successful caught herself in the girl’s cross-hairs.
After the karaoke, they had a neon pool party. Chris tried to talk to one of their other friends, and I think has further inflamed the situation. I told her she need to have said okay, and not cried about it when they said she couldn’t sing with them. Sometimes it is just best to walk away instead of trying harder to insert yourself. Those girls are a cliche and one of them along with her brother have proven to be brats. 12 more days till Mike is here…
I’ll give Jesse credit, she could tell Chris was upset. And tried to stick close to her for the rest of the evening. Jesse had wanted to sit on the edge of the pool for the neon pool party, but there were way to many kids in the pool to be able to keep her safe. Jesse did cry about it being not fair, but I explained we can’t let the bandage get wet. After about 3 minutes, she asked to play with my phone.
A family from Va Beach is camping next to us for the week. They have 3 little kids, who just stare at Jesse. With her hair gone, it happens all the time. They are just curious, and Jesse just tells anyone who stares she has cancer.
About 9:30pm, we finally got to bed. Jesse woke me at 4:31 and 6am puking. She never complained about her stomach hurting, and this morning she is eating and playing as normal. And there is no fever. I am a little puzzled by this, and will ask them on Monday morning.
We have to be at St Jude for treatment at 8am. Then see the line nurse at 2pm. That isn’t convenient for me, so I am going to see what I can get switched on Monday. I had asked for afternoon radiation, but I guess since I was concerned about being late on Wednesday, they decided to make Jesse the first one. Works for me, less time there the better 🙂
Thank you Aunt Carolyn and Uncle Jerry for the gift card to Jason’s Deli. We’ll be having lunch in town one day this week 🙂