The last couple nights Taylor has been complaining about her tummy a lot but sleeping okay for the most part. It seems that the tube feedings may be bothering her or something. I cut the feed off in the early morning today because she was complaining a lot. At one point last night she apparently stood next to her bed and peed on the floor??? That is a new one. She has been eating ok over the past couple days; not good, but at least she is eating here and there. She still gets tired a lot and doesn't want to do anything we ask her. She won't clean up her toys, put her clothes away, etc. And the other day some friends came over and they watched tv. When it was time to stop tv and go play, she protested, hid under her blanket and fell asleep. She wants to watch tv all day long and, um, I don't care how sick someone is, that is not a good idea. So we have been having to deal with her disobedience and protesting in things. It is not easy to discipline a "sick" kid.
Today was Chemo visit #7 and review of 2nd MRI results. We were in clinic pretty fast and she got accessed and blood drawn, then stats taken, and then straight to a room. I had mentioned to the nurse about Taylor having pain during urination and bowel movements and she thinks it may be UTI, so we needed to get a urine sample.
Once in the room, minutes later the Doc came in, that was fast! He says the tumor looks stable. They didn't have the full optic scan this time for some reason so he could not see all the angles, but the before and current pics look about the same. There may be some slight shrinkage in one tiny area but it is hard to tell. In this kind of tumor, the success is not based off of tumor shrinkage or disappearance, it is based off of no growth or no extra loss of her sight. So, things are looking good so far with the tumor.
While discussing that, I brought up the issue of her voice. Since Doc was on vacation last week, I did not get to talk with him about it. When I mentioned what was going on, he immediately knew what it most likely was and had some concern. He said the Vincristine (one of the 2 chemo drugs she is on) can cause vocal chord paralysis and that we needed to get it checked. So, he called the Ear Nose and Throat Doc upstairs and got us in right away to get that checked out. So, off we were to see him.
We got in right away, and the Doc was really nice and had already reviewed Taylor's file and everything. He knew exactly what the oncologist was talking about. We talked and then he did a little check on Taylor. Then he gave her some spray in her nose to numb it so that they could do a scope of her vocal chords. It only took a few minutes to do the procedure while I held her in my lap. Then a few more min for him to review the video. He said that the vocal chords have movement so they are not fully paralyzed, but they are not fully working as they will not close all the way. This can be causing her voice inhibition and can cause her coughing when she drinks. It is not good for your vocal chords to do that because it can cause liquid to go down the wrong tube.
So, we went back to chemo clinic while the Docs talked on the phone. Soon after, the Doc comes out and says that we will hold off on doing chemo today so that they can watch and see if the voice gets better off the Vincristine. It is supposed to come right back if that is in case the problem. Then, Tues we will go back to the throat guy to see if things look better. If so, then chemo will be on for Wed but at a lower dose and then the throat Doc will check her monthly to keep an eye on it. (great just what Taylor needs, another specialist and our family another set of appts to go to). If the voice doesn't get better by Tues, then oncology Doc says we will have to change meds and get a new regimin set up. So, we are in a wait and see mode right now I guess.
We did get her numbers and they were really good, 1750 I think! Her red blood cells are still a bit low, but not enough to need to do anything about it.
On the way out, we ran into the teenage girl and her mom. It was good to chat with them for a min. She is doing really well, no major problems. She is on lots of different meds for various things, like Taylor is, but I think more so. She said she feels like a walking pharmacy. We know how she feels! She also still has her hair. Her MRI was last night so hopefully they got good news today at their appt.
Taylor has been low key today, not very active. Her tummy is still hurting and she hasn't really eaten much. I just heard back on the urine test and it seems she prolly has a UTI. So they are sending a scrip for that as we wait on the full culture to come back in a couple days. Hopefully with her not having chemo this week that we will have a good week!
Peace Be With YOU! Much Love!
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