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.
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.
Faye loves Poptarts. They're one of the few things she'll eat.
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.
14 comments:
I can't help but cry my eyes out. I know it took so long to get Nixon here and he did truly come when he was suppose to. Little Faye needs him so much right now and that sweet little angel will be able to help her. What a gift. What a testiment to me that the Lord knows us and our needs. He is very aware of your family and little Faye. I love you Stace. What an amazing family you have. As always, you are all in my constant thoughts and prayers.
She is so amazing! What a great example Faye has been to so many of us! We love you Faye!
I can only agree with everyone else, that it is truly amazing! Faye is always in my thoughts and prayers. Such a strong little girl, Nixon is such a beautiful baby and such a blessing at the right time.
Stace I am just amazed that little Nixon is the only match. Honestly it makes me cry, all things happen for a reason. I so believe that, to get pregnant when you did, for Faye to be diagnosed when she was, it really just amazes me. Love you dear family, you can just feel your sweet spirits in all of your pictures, an amazing amazing family. Stace I will be calling you this weekend, just a heads up!
She must have a little of great granny Horspool in her to be tickling people with her falling out hair! That sounds like something granny would do. I sure love the I love Lucy shirt!! Did it come from her friend Lucy?
She is such a doll and has a cute little personality. Faye seems to be such a positive little girl. That's such a blessing that Nixon is a match, he must be her angel sent from heaven. We're thinking about you guys every day!
What a sweet little girl! I donate photography to children with cancer. We take photos the child and their family all for free. And because of donations we are also able to give you a photo album as a gift with the photos on a DVD so you can have full access to all the photos. We love doing this for these little heros.
Here is our website so you can see what we do
www.momentsofhope.wordpres.com
Please let us know if this is a service we can provide to you!
This post makes me a little teary. Just the reality of it all. Been thinking about you alot this week. Crazy that little Nixon is a match, funny how Heavenly Father works. No doubt in my mind, that his hand is in it all. What a comforting thought. Sweet Faye, love that cute face. She makes losing hair look beautiful. Got a package ready to send you guys but I don't think I have the right address. Jen said she was going to talk to you this weekend and she will get it from you, if she forgets to ask, remind her for me. Sending lots of love your way Stace. Happy Mothers Day to one of the greatest moms I know, hope it is a good day for you. Love ya-
Oh Faye, you are such a DOLL!
I am so wishing I had a Barbie Bike of my own!
*The Lord works in mysterious ways!
Prayers and thoughts always coming your way.
I know you all don't know me but I am related to Teri and Jenny. I have followed your sweet little girls blog daily. I find myself so strengthened by your family's courage, strength, testimony, and Faye's desire for life. I love to read her sweet outcome about all that she is going through. I wish that I could do more to help you all even though we are complete strangers. Your family is amazing and such an example to us all. Thank you for sharing Faye's story with the world. I pray for you daily and your family. I think about how I would handle this situation and don't know if I could ever handle it. I am amazed at Heavenly Fathers plan and that your little newest addition is your match for his big sister. What a greater gift can you give. He must have the spirit of a strong little warrior. I wish your family all the best and will continue to pray and cheer you on from a far.
Thanks so much for the update. That's so amazing that Nixon is a match. What a blessing. Squinkies and pretty pretty princess are favorites at our house. We can't wait for Faye to get better and she can come over and play for hours. We pray for that day. We love you Faye and family!
I looove her hats, and she looks so awesome in all of them! I'm so glad that she is getting so much love from people! Little Faye is such an example to me too, she is truly a warrior, with the most amazing spirit! I am also amazed by the gifts that Heavenly Father gives us...He never leaves us to fight the battle alone, and to hear that baby Nixon is a match, it just humbles me! LOVE YOU ALL SO MUCH! I need an address for Faye, can you tell Stacey I was in her ward in Logan? My email is jensonci11 at gmail dot com.
Thank you so much for the updates!
I love the update and pictures. Some of our cancer friends use a lint brush to "comb" their hair.
Seeing the picture of Faye riding her bike in the halls just reminds me so much of what we went through with our Erin. You guys seem to be doing so well. It is exciting that Nixon is a match, you have such better odds if Faye does the transplant.
I am curious why they used a Picc line in her arm? Primary Children's in SLC, Utah only gave us the option of a Broviac Central Line for Erin's AML treatment. The Broviac was a tube that entered directly into her heart that had two lumens on the end for the chemo and medications.
I hope you continue to sail through these rounds with much uneventfullness. I will continue to pray for Faye and your family as you go through this very difficult trial.
Jill (mom of Erin who had AML)
I learned of little Faye from your dear friends Jenny and Eric. I am inspired by your little family and Faye and her courage. Do know that you also have my prayers and thoughts. I had a friend who's little girl went through this (not AML however) and she walked out Primary Children's 7 months later a healthy little girl......Faye will do that same! Best of luck to Faye, to Nixon (what a true angel sent from heaven), and to your whole family!
Lisa McBride
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