I seem to be excelling at the weekly updates as of late, but we really have not had too much happening. We get up, go to St Jude, get radiation, and return… for the most part.
Monday, the line nurse came to see us early. She removed the gauze from Jesse’s port site. They were very pleased with how the site looked. Until Monday, I have to clean the incision site with betadine. As of Saturday, the steri-strips have not fallen off.
Tuesday, we did make a detour to Graceland. I figured we had better see it since we were here and St Jude patients and family get in free. Chris was fascinated with the tour, but she got stuck on Elvis dying at 42 of a heart attack. Jesse was fascinated with Priscilla’s wedding dress and photo of baby Lisa Marie. I got stuck on the smallness of the rooms and that he only paid $100k for the house and 13 acres.
The other big news from Tuesday was (drum roll please) Jesse was released from isolation!! We are no longer lower than dirt. Yeah. Jesse was really excited. I am enjoying that they can play in the play rooms while waiting for radiation.
Wednesday, we got to walk in the front door and go to registration. Without an escort, without having to call for a clinic to fetch us. We even got to wait in the radiation waiting room. Here Chris discovered tape art. She made 6 flags while we waited for Jesse’s appointment to finish. Jesse walked back with the technician like nothing was happening.
We went for lunch at Chili’s. As we were in the parking lot, Jesse suddenly screamed her stomach hurt. After handing her a bag and her hurling, she wanted to go eat.
Thursday, we started the day at Triage. They had to access Jesse’s port for the first time with her awake. She was beyond nervous. I talked her into singing different songs. Chris was a great help in getting Jesse to sing. I had also put LMX numbing cream on her port site almost 60 minutes before she was stuck. My plan had been 30 minutes, but they didn’t call us back right at 10 (which is what our appointment time was).
The nurse laid all the equipment out she would need. I never thought that accessing the port would have to be sterile. It makes sense, but I was thinking they would access her like they put a line in her arm. She gave us masks to wear, removed the lmx cream, and inserted the 3/4 needle. Jesse commented that it didn’t even hurt. And we all breathed a sigh of relief.
As for her weight, she is back to 15.8kg. No one said anything to us. She is eating, but we are more active.
Our next stop was radiation for her treatment. Shortly after our arrival, the nurse called us back. They were having the doctor see her before radiation treatment because they were behind on the machines.
There is a new fellow. I told him about her occasional vomiting (3 times total since we have started radiation). He turned it into every day when the doctor came in. Can I tell you how much I can’t stand residents and the radiation fellows? Just report the facts… don’t embellish them, especially with me in the room.
The doctors recommend that Jesse get zofran, which we have. They checked her skin, which looks great because of a cream they gave me to put on her skin.
We left them to wait for her radiation time. It was for 11… At 11:40am, our nurse from D clinic called to see if Jesse could come over to see the doctor there because he had a meeting at 2pm. I told her we were still waiting for radiation.
About 12pm, the radiation technician came out. It was then we learned, they were running an hour behind. She suggested we go get food, but I wanted to catch Jesse’s main oncologist before he left for his meeting.
D clinic saw Jesse in less than 30 minutes. We didn’t see the main oncologist, but we did have to see the nurse practitioner, who commented on how tan and healthy we all looked. Don’t think she is the outdoor type of person.
When we finished with her, Jesse’s nurse came to de-access her port. This hurt because the port is still new. To keep it from being pulled out, the nurse had to hold it in place. She told me several other patients have told her this feels like someone pushing on a serious bruise.
We returned to Radiation at 12:30pm. By 1pm, we had not seen anyone. And I think this is where I messed up. I should have had the receptionist call back at 12:30pm to let the technician know we were back.
Finally at 2:30pm, they took Jesse back. Chris made 9 flags during this time and painted flowers and an airplane.
Friday we only had radiation. And after waiting an hour, they were ready for Jesse. While we were waiting, the kids got a scolding from the child life specialist about the mess of the playroom and paint being everywhere. I had my girls pick up after themselves when we left on Thursday, but they might have left behind some of the paint.
It actually burned me a tad. These kids are caught waiting for radiation to be ready, they need something to do. Why don’t you have the place constantly staffed with volunteers if you don’t want to deal with a mess?
On the other hand, maybe this scolding will help me. I have been after the girls to clean up after themselves for years.
While we were waiting on our vehicle, 2 patients approached Jesse about giving her and her sister a blanket, a hat, and clip with hair. The design is by a girl who fought cancer over 7 years ago. She is at St Jude’s for her yearly scans. Jesse loves the clip on hair, and I do to. It is easy to care for. Thank you Hats and Hair From Kids Who Care (They have a group on Facebook if you would like to check them out).
We returned to the campground, and decided to go to the pool. When we arrived there were 3 boys in the pool. One of them obviously feels that he never gets enough attention. He kept trying to show me how he could swim, which he could not because he about drowned me sitting on dry land. (Another part of the story, I don’t have on my bathing suit… don’t feel that it is fair to swim until Jesse can. So he was attempting to drench my clothes). I told him that he was killing me. Never phased him at all, and his grown ups never bothered to call him away from me.
Another family came with some rambunctious boys. Two tried to start fighting right near Jesse. When I called them down the parents gave me the stink eye. Excuse me for trying to give my daughter a chance to enjoy something that your kids get to do without batting an eye. And she can only sit on the top step while your kids roam the pool.
This family had a baby with them. I had to call Chris away from them because I could see that “smother the baby with attention” look in her eye. Luckily a few minutes later the slides opened, and the pool cleared out except for a mom and her daughter.
The daughter was really nice to play with the girls. Turns out they have recently moved to Horn Lake, MS from Stanton, VA. We may try to meet up with them later. A few minutes later most of the kids returned and some new ones. I opted at that time to pull the girls because it was getting just too crazy.
We went to the bathrooms to grab a shower. In the shower stall I like to use because it has a bench Jesse can sit and wait on, someone had popped or gotten dog poop in the shower stall. Chris and I grabbed a quick shower in another stall.
Afterwards, we went to the office to let them know. It’s not the campground’s fault. They clean the showers daily and do a great job. The caliber of people that have arrived this weekend is making me want to lay really low.
My mom had sent us an Olive Garden gift card, which we decided to use. Afterwards we went to Books a Million, and the girls picked out a book each. A lady in there asked why Jesse’s hair was missing. We explained, and then she had to know our names. In her defense, she looked to be about 30, but stuck at the mental age of 4 or 5. I am very proud of how the girls treated her.
Today we are going to just hang around here. The heat the next few days is going to be really high. Only one more week. Then we pull out for home. I have a feeling this is going to be a long week for me. I am ready to be back at my house with separate rooms I can quarantine kids into when they interrupt me, talk to me while I am on the phone, fail to listen to me, or fight with one another.