Sorry it’s been so long since the last update. It’s been a crazy few days here.
We finally started treatment on Wednesday. YEA!!!! It definitely feels good to get started on getting rid of this thing rather than just doing testing to learn more about it. I don’t know if Roxy sees it that way, but at least it feels like we are moving in the right direction finally.
She gets radiation every day Monday through Friday. Radiation is actually pretty simple with very few side effects. The problem right now is that in order to do the radiation, she has to lay still on her back for 15 minutes. This is something she can’t do, so she has to be put under anesthesia every day. That sucks because that means no eating or drinking after midnight and it usually makes her pretty sleepy for the first half of the day. But, the good news is that Ewing’s tumors are usually very radiosensitive, so they think that it will start to shrink pretty quickly and she will have some relief from the pain without being drugged all the time.
Chemo started Wednesday. She’s on a chemo schedule that varies the drugs she gets. This was the medium length treatment. She got 2 drugs that were pretty quick (one was an IV push and the other was a bag that took about 15 minutes). Immediately afterward she felt pretty crappy (headache, nausea, generally crappy), but after about 30 minutes, she felt a lot better. She actually would have slept pretty well that night, but they do A LOT of monitoring after chemo so they were in here pretty constantly.
Bad news for her is that they had to put in a feeding tube today. Those of you who know her know that she lost quite a bit of weight this year. I guess having a tumor can give you hyper-metabolism so you just can’t gain weight. Good diet plan, right? Ha ha. Since she has been here, she has pretty much had nothing to eat. I don’t blame her. Half the time, she isn’t allowed to eat or drink because she’s scheduled for some sort of procedure. When she can eat, who wants to. The Cleveland Clinic has more food choices than a lot of hospitals, but it still sucks for a kid. Nothing is going to taste good when you’re stuck in here. And Roxy is a pretty picky eater anyway. So, the feeding tube was definitely necessary. I think getting some nutrition will help her feel better and hopefully once we get home and she puts on a little weight, they can take it out.
We are still hoping to come home early next week. I got all my training yesterday. That was a little intimidating. I’m worried about seeing the signs of low red blood counts and low platelet counts. Those seem like they could be hard to detect. I guess I’ll learn as I go. We still need to get all the meds straight and meet with the pharmacist. I also need to be trained on the feeding tube. I think I may be ready for my nursing license by the end of all of this. Once we are home, we will still be back here every morning for 6 weeks for radiation. We also have outpatient chemo pretty much every week. And every other week, we are here for either 2-3 or 4-5 days for the more intensive chemo. I think we will all get used to the routine of it and I think that it will actually be good for Roxy to be in a routine. Right now, she’s pretty depressed. She hates everything and she feels like crap most of the time. She’s angry and she feels like she’s different and doesn’t have any friends. I can’t imagine going through this at my age, let alone hers. Scott and I are as supportive and positive as we can be, but she just can’t see the light at the end of the tunnel right now. I’m hoping that getting her home will help with that. I think she may feel a little more “normal” once she’s back in a familiar place. Personally, I’m really looking forward to being home. Scott and I alternate nights that we stay here so that we can spend some time with Brie, but even at that, it’s only a few hours. I feel really bad for her and guilty that I can’t see her more, but when I’m with her, I feel guilty that I’m not with Roxy. It sucks and I’m really hoping that soon, we can all be together under one roof again.
Thanks again to everyone for all the gifts, positive thoughts, prayers – everything. I feel so lucky to have such amazing family and friends. I know that I couldn’t do this without all of you – especially my parents who have basically moved up here to take care of Brie and help us with all of this. Thanks so much to everyone!!!