Hi all, it's Kari! I havent blogged in awhile... a couple of reasons... while Mimi was getting her radiation and doing really well, I took a vacation to see my mom in Florida and then when I got home, I had a major influx of business! It's my busy season (im a photographer) so while im in demand I have to run with it!
I do have some uplifting news to bring you tonight... but ill back up a bit first. I was with Nuna on Monday when we took Mimi into see the Oncologist and ill make no bones about it, she was in REALLY bad shape. I was so worried about her and didn't feel like anyone could do anything fast enough to make her feel better. I left the hospital just praying, please God... just bring her comfort and stamina while they work to try to get the right combination of whatever it is to make her feel better.
God provided. I have stayed away and helped a bit with JJ on Tues and Wed. Got up there tonight to find her sitting up in bed and looking at least 70% better than last time I saw her. She was barely responsive on Monday when I left. In talking with her tonight, she doesn't even remember much from Monday or Tuesday... guess that's just as well. But it does give you some insight to how rough it was.
I think the main things I need to bring you up to speed about are first the medical things: On Wed. morning the oncologists told her that there was an additional brain tumor and the original tumor had grown. I think that hit Mimi hard. Almost a slap in the face I imagine... here she has been so willing to give it a go and suffer some to hopefully prolong and heal and then that news... you can imagine im sure.
Well.... then on Thurs. morning they came back and said they talked with the tumor board and they re-examined the films from the MRI and in fact there was NOT a second tumor. The original tumor has grown, but not in the way they thought it had. They actually showed her the films and that brought her a much needed renewed sense of hope.
So, back to the "rash" that has caused her this new set of trouble... the explanation she is being given at this point is that it is due to the effects of the Dilantin (a anti-seizure) medication, they give this to pretty much everyone who has brain surgery from what they tell us... just to be clear, she has never had a seizure. Her diagnosis, for this rash, (per her nurse tonight) is Stephen-Johnsons Syndrome (she at least has all the signs and symptoms of SJS, so they say). It's a mild case of SJS, however, SJS is VERY serious and we are just so thankful that it did not progress further. Her skin is healing but still very painful. To give you a visual idea, from the top of her head down to her abdomen area, it's a blotchy red, blistery, patchy type of rash... very angry looking inflammation. The top of her head is super sore from the radiation still, but not as painful as her ears. One of her ears was just one big blister. Imagine a curling iron burn on your ear ladies... and multiply that. Yeah... ouch. On top of that she has Thrush (yeast infection inside of her mouth) a side effect from the radiation and the rash. The nurse explained tonight that what we see on the outside of her body is just the same as it is inside. The Thrush is healing and they are giving her Nystatin to help that... definitely helping A LOT!
Tonight, I got to spend a few hours with her. She asked me to bring my scissors up with me and cut her hair. I went to cosmetology school right out of high school so I do a tad of that on the side. Anyway... I gave her a haircut! Her hair is falling out in some spots, but it's still full towards the front. After her haircut she got into the shower. Cant use soap or anything on her skin (again imagine a burn), but we rinsed her down and got a new gown and everything on and she looked like a million bucks! Once she was all done, she came and sat out in the chair for a bit (can you see the improvement?!) Huge difference to her being barely responsive on Monday. We had a good chat about everyday stuff and about my pre-teen! Thanks Mimi for the thoughts... I love that about you... you always have such a gentle perspective from both sides to every situation. Im sure you all can relate to that about her.
I left there feeling so happy. I have so much JOY being around her and I am so happy to see her feeling so much better. Now if you will just pray for additional healing, comfort, and peace... I think those three things will get her home quickly! We all know that's where she wants to be!
Thank you everyone for your prayers and thoughts. Tina and I will continue to keep you updated as things change/progress.
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