G is for Gracie! She loves practicing her writing and doing her "school"
This was Sept &th. check out all that new hair! it is growing in quite dark this time. We were at the store and there was a lady that said "I like your pixie haircut. so cute" I think she was totally serious. :) lol.
anyway, the second week of chemo went ok. She was still puking a couple times a day except for the few days she was on emend. Last weekend we went down to the great wolf lodge with the whole family and grandma and grandpa. It was a lot of fun. We were only 40 minutes from ft worth for our appt on tuesday so Gracie and I drove over early tuesday morning while the others checked out and drove back home. Tuesday she had her echo and /ekg and then a clinic visit for labs. The doc was so happy to see how good she looked and that she was smiling and walking and talking. Wednesday she had a CT scan that showed more fluid on the left side, so they scheduled for a thoracentesis/chest tube for the following day since she was going to be sedated anyway for the Bone marrow biopsies.
Thursday she had an MIBG scan and then the other things. The surgeon said it wasnt the same clear fluid as last time, it was milky white and that means it was coming from something else. they call it chylothorax. basically the white fluid was fat leaking from the lymphatic system. now we have to change her diet to low/no fat and they gave us a new formula.
We go back down next week and they will do a chest x ray monday. If there is no new fluid then we can proceed with our original plans of stem cell transplant. if there is new fluid, we will have to manage this another way with drugs/more surgery and do another round of chemo before transplant. We are hoping and praying for no more fluid on mondays x ray.
any prayers are always appreciated. :)
google chylothorax
google chylothorax
I am so impressed with her hand writing! My four and half year old wants NOTHING to do with learning her letters. Gracie is totally amazing! You deserve a gold star, girlie!
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