Over all I think today was a really good day. Brylee started actually playing. She hasn't done that in awhile. She played puzzles all afternoon with my mom. She looks really uncomfortable though. The steroids that she is on are causing her to retain a lot of water weight and gain actual weight. This is making her feet really swollen. They look like they hurt...poor thing. She's been eating like crazy! Holy cow manure this girl can put away food like no ones business! Who woulda thought that a month of not eating would do this to a person? For lunch she ate like 20 chicken nuggets and 2 pieces of pizza! I'm seriously thinking about taking her feeding tube out myself because she is doing fine chewing and swallowing. She hasn't choked once all day long! It's so amazing watching her improve and do better on tasks that she hasn't been able to do for a year. She's smiling, moving her eyebrows, closing her eyes all the way and chewing and swallowing. It's hard to be optimistic though because I keep thinking about how she is doing exactly what the doctors predicted. I don't want them to be correct in how this tumor reacts to treatments. I really hope they are wrong...
I am so happy that you are getting this opportunity to witness, record and truly appreciate these moments that are usually taken for granted. To see her smiling, playing and eating,even though it may be temporarily are truly tender mercies. Big hugs and positive energy and prayers going your way! Marsha B
I'm so happy for you and for Brylee .its wonderful that she is feeling so good .these little rays of sunshine mean so much more for kids with cancer .sometimes they are pretty hard to come by .enjoy your sweetheart
Brylee Olson was diagnosed with a DIPG, an inoperable brain tumor (infiltrating brain stem glioma) on Wednesday, March 6, 2013. This is a blog for her and her fight to be in the 5% who survive 3-4 years. Or the rare chance of complete survival.
I am so happy that you are getting this opportunity to witness, record and truly appreciate these moments that are usually taken for granted. To see her smiling, playing and eating,even though it may be temporarily are truly tender mercies. Big hugs and positive energy and prayers going your way!
ReplyDeleteMarsha B
I'm so happy for you and for Brylee .its wonderful that she is feeling so good .these little rays of sunshine mean so much more for kids with cancer .sometimes they are pretty hard to come by .enjoy your sweetheart
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