Not much has been happening as Round 1 winds down. Faye continues to get blood and platelet transfusions. She cries when they change the dressing on her picc line but is getting tougher and tougher each week. She's been receiving the presents that lots of you have sent which does so much to brighten her day. Thank you!
The other kids sometimes keep the bikes from the playroom in their rooms and Faye was very sad that the barbie bike she likes wasn't available. So Nick bought her her own barbie bike. Now they can keep it in her room and she can have it whenever she wants. When they finally break out of the hospital they plan to pass it on to another kid.
Faye loves to go on "walks" which consist of her riding her new trike and mom or dad chasing after her dragging the IV tower behind. Every time they go out on a walk Faye sports a new hat and attracts a lot of attention which she secretly loves.
Faye's nails painted "pink and purpur". (Which only lasted an hour since her favorite part is picking it off!)
Stacey started noticing hair coming out more than normal while combing Faye's hair on Thursday. By Friday Nick was calling her a little puppy because she was shedding like crazy. Hair covered her shirt and ours, the bed and couch, it was everywhere! We started to comb it to see how much would come out and Faye began pulling out clumps. I was a little freaked but she thought it was funny!
She gave herself quite the bald spot!
Faye made a friend at the hospital named Lucy.
The friendship formed from an exchange of gifts. Faye gave her 2 rings and Lucy gave Faye 2 "squinkies" (little toys that come in little plastic balls and go on bracelets or rings, which Lucy gave her also). Later, Lucy came into Faye's room and they played Pretty Pretty Princess together. It was fun for Stacey to see Faye hanging out with someone. But the next day Lucy went home. Another part of AML will be watching the other kids come and go while Faye stays on and on. I recently learned that out of all cancer kids coming and going out of 36 rooms, Faye is the only one with AML.
Sometimes very nice people come to visit Faye. One day, two guys came and sang her a song with guitar and harmonica. It was a blues song that Nick loved. Faye was extremely bashful as usual. Another day, Kameron Loe and Sean Green of the Milwaukee Brewers stopped in to wish Faye well. Again she was very bashful but Nick thought it was awesome and got this picture. (very blurry, sorry)
Faye continues warming up to the doctors and nurses. On Saturday, Nick went to get a pizza from the delivery guy in the lobby and while he was gone Faye talked to nurse Kelly. She told her about Mitchell and Nixon. When Nick got back Faye told him she talked to her and that they were friends now. The day before that Nick had to tell her that Dr. Frank will not be helping them anymore (she has 3 doctors) and Faye said, "Oh, no more Dr. Frank? I liked him." (Even though she would never talk to him.)
As of Tuesday, her head is mostly bald on the back and sides. Stacey asked Faye if it felt funny with no hair on the back of her head and she said yes. Then she asked her if it made her sad and she said no. So, that's really good. They were both sitting on the couch the other night and Stacey was looking down and Faye pulled out a clump of hair and started tickling Stacey's nose with it and laughed.
New information from today: The bone marrow match results are in. Four-week-old Nixon is the only match. Originally, Nick and Stacey were told that they could not take bone marrow from a child under 1, but the doctors now are saying it has been done and that they'll need to speak with the bone marrow specialist to see what their options are and what risks are involved. They have at least a couple of months to figure it out.