Of the way done! Radiation ended yesterday with a lot of fan fare (Some good, some I’m just over this)
Jesse woke up yesterday morning starving. And when we stopped by clinic to draw labs she screamed for 10 minutes over not being allowed to have a fiber bar until after her treatment was completed.
We went upstairs to get ready for our last treatment. The nurses and childlife were and have been wonderful. They threw her a little party by giving her some sparkly shoes, hat, Cabbage Patch named Rodney (although she called him Bella and then Jesse), and her toys that she had played with while waiting for all the other treatment times.
We made the last “field trip” over to Norfolk. There they let her ring the bell and the technicians gave her a teddy bear.
The radiation oncologist wanted to see us before her treatment. Why I don’t know. It was a doctor covering our non-existent doctor… who barely knew anything about Jesse’s case. And didn’t tell us anything. It just upset Jesse for the delay in getting her “picture.” Turns out that the technician was mistaken in saying that the CT Scan they did was to see if the tumor shrunk…. maybe it was that for them… but they obviously have no intentions of sharing that information. And when I asked her regular oncologist he told me that was more than likely to check where the fields of radiation were hitting. We have to go back in a month (on Jesse’s birthday) to see them again. They made an exception for us allowing her to be seen on a Tuesday because the doctors don’t normally have appointments on Tuesdays. They did this when they realized I was driving over an hour… and their nurse didn’t realize until that last treatment we had been doing that everyday.
We did this all before she was given her ketamine and verset. This time the doctor gave her a little extra ketamine… so it took some time to wake up. They actually carried her back to clinic on a stretcher and aggravated our clinic nurse by calling a bunch of times. I didn’t realize they had done that… Ah we would have to go out with a bang 😉
Jesse’s counts are great and we asked about going to see her cousin Joel explaining that she had never been to their new house. Our doctor looked at me like I was nuts. But I don’t think he realizes that since the diagnosis she hasn’t left Hampton Roads. And since the stem cell transplant, we have not had her anywhere but home, hospital, and the grocery store twice (it’s the Farm Fresh across from us… she definitely hasn’t been in Walmart). Oh and her great aunt and uncle’s , great-grandparents’, and neighbor’s homes twice briefly to pick up her sister.
Her doctor mentioned that the next time we go into clinic she might not have to stay in isolation. We’ll see if that happens 🙂
Our next round will begin either later this week or beginning of next with MIBG, CT Scan, Bone Marrow tests, and blood work. Hopefully our nurse can schedule it for the earliest possible time.
Around 1pm we got to head home. I stopped in Suffolk to get us lunch, of which Jesse started screaming that she didn’t want to eat in the car. I told her that I was eating. And she could eat hers at home. When I started eating she asked for hers. She is just exhausted, which causes everything to be wrong.
She fell asleep on the way home, and slept for a long time. I was able to stain the top of our large deck before she woke up.
By 8:45pm, she was asking to go to bed. I plan to let her sleep as long as possible this morning.