Three-year-old Faye was diagnosed with Acute Myeloid Leukemia on April 11, 2011. After 135 days in the hospital, Faye was able to spend 3 years at home. On September 5th 2014 she was told that she had relapsed. She was able to achieve a second remission and had a bone marrow transplant on Oct 17th 2014.

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Monday, September 22, 2014

I Mustache you......who is having more fun?

These two........ I cant decide who loves their time together more!  Its not just that Faye has her Dad wrapped around her little finger. Dad has Faye wrapped around his too!  And as the Mom and Wife of these two I wouldn't want it any other way....not that I don't give them both a hard time about it still!
 Monday they made Faye go to a pill swallowing class!  I went along, but I had to wait outside. All I know is that she swallowed a tiny pill that morning just fine.  And after the class she came out in tears, and wanted to go straight back to the room.  They wanted Faye to show me how well she could swallow pills.  Faye didnt want to.  And the next time they brought the small pill for her to swallow she wasnt quite as willing!  Sooooo not so sure how effective their pill swallowing plan/class is!  On the plus side, she did get picked up and "driven" to her appointment. It's the closest to a celebrity I have ever been! 
One of Faye's friends sent her this doll.  She had me do the dolls hair, french braid with a ponytail at the bottom.  And then, of course, after Faye's bath it was requested that I do the same to Faye.  Friends gave us a sleep mask, which Faye took over right away!  When the doll came with one it was like a match made in heaven.  Faye is not letting some silly 'ol hospital interrupt her beauty sleep!  
We spent a good part of the afternoon coloring this picture!  I had so much fun doing it, I asked her if she wanted to do another one....she was excited and she picked out Jasmine.  She colored for about 5 mins, and then decided she was done!  Of course I had to finish it...but it didn't look quite as good as this one.
On Tuesday Dad and Mom switched.  I finally got to go home to see the boys.  And Dad got some one on one time with his girl!  Both were equally needed!

Mom left just in time to miss the first PICC line dressing change.  Dad is just getting his hearing back!  She always hates having to do that.  Eventually she gets used to it.  The guy who was doing it said there is some stuff called Brava adhesive remover, they dont carry it at the hospital, but Dad ordered some online and I hope it arrives for this week's dressing change.

Someone sent Faye this pillow.You take these squares of fabric and punch them through marked holes.  She has been working on it all week here and there.  Everyone that sees it says how cool they think it is. We like a "take a long time" project!
Dad had to expand her game horizons by teaching her a few new ones.  After far too many frozen board game matches she is now skilled at Suduko, crazy 8s, and old maid.
On Wednesday she got some platelets.....
And then...you knew it was coming!  It was time for Faye to get a haircut!  We found it is easier to cut it short than have long hair falling out every where.  I mean the hair gets everywhere.  We are prepared this time with a lint roller to keep the hair cleaned up! 
But look how long her hair is....she has been blessed with good hair!

They have a little salon on the 16th floor.  So Faye got her mask on (to protect from any outside germs) and dad and her headed up to get a cut!
At first when we found out the cancer was back Faye told us that she didn't want to cut her hair this time.  As time went on she decided she wanted to see which ponytail was longer...this time or last time!  So Dad brought her other ponytail down to the hospital so she could compare.

Its amazing how much longer,  thicker..and a bit darker her hair is now.

And the finished product! Honestly we weren't loving it at first.  Nick said...."well in about a week or so you don't have to worry about it anymore!"  I suppose it is just the shock.You don't realize how different a little haircut can make someone look!  
But then, of course, after a nice bath, I was in love.....she just looks so darn cute no matter what she does!
Faye doesn't love it.  She still misses her long hair! 

This is how Faye gets around when Dad is here!


After another platelet transfusion she got all ready to watch the Aggie game with Dad on Saturday!  I am pretty sure she was super excited about it. Her face doesn't quite show her excitement!

This is Faye's little brother Jay.  He turned one on Saturday. I loaded up the boys and we went down to visit Faye so she could see him eat his cake.  This is the first time the boys and Faye have seen each other since the 8th. 
I think it was much needed!  Jay was in haven to be back with his "Mini Mommy".  That's a name Faye has taken upon herself at our house.
Dad and Faye even took a little trip down to the gift shop to pick Jay out a present.....He LOVED it, can't you tell?



 Monster cake for our little Monster! 

 The day that Faye got her bone marrow biopsy, there was alot of waiting and she was getting grumpy because she couldn't eat until after the procedure.  So to take her mind off eating we tried to think of a theme for Jay's birthday.  We pulled up Pinterest and looked at ideas.  She picked out a monster cake.  I was then committed and couldn't disappoint!

Just a bit of video from our time at the hospital!
video

Faye took cupcakes around to the nurses after Jay wanted nothing to do with Cake!
A few last pictures before its time to say goodbye.

We had so much fun hanging out with Faye!  But our excitement was short lived.  Before I even got back home with the boys, Nick called and said Faye's temp was trending upwards. At 8:30 it was 99.8.  She felt warm, she wasn't acting like she felt well.  Quickly my heart sank.  Nick and I had been questioning if we should bring the boys up. Now, if she was getting sick, it's the first thing that came to my mind.  But then I thought about how happy they all were to be with each other. It was very bittersweet.  I got home and was getting the boys situated when he called and said it was at 100.7  It all of the sudden got real again.  It's the one thing they don't want these kids to get...A FEVER!  The docs and nurses were on standby with all sorts of medicine and plans of action.  Then at 10:30 it went back down to 99, then at 11:30 down to 98, and she has been fine ever since. But to say it scared us would be an understatement.
She got a blood transfusion today (Sunday).  Those always perk her up.

As I was typing up the blog post, Nick sent me this picture with the caption:
"This is the face she gives me when she wins every game we play and says 'I am the queen of this game'."
Hey, when you're good you're good, right!?
So there you go....another week down!  Tomorrow (Monday), Nick and I go to meet with the Bone Marrow Doctors.   Hopefully to get some questions answered and to get a better idea of how the rest of this hospital stay is going to go.

As always a great big hug and thank you to everyone out there for all your love and support!  We are blessed.   

7 comments:

Katie Ellis said...

What a wonderful girl with wonderful brothers and parents. Love your guts everyone!

Lori said...

I can't believe how long her hair was.... But she looks absolutely darling with it short... Love that Faye!

Texasholly said...

I love her A&M outfit. GIG 'EM, Faye!

Jenny Faasavalu said...

Stacey, I'm so sorry I forgot all about Jay! I saw his picture on Facebook and about died. I forgot a kid! So when you get my box and there's something for the other boys, but not Jay, You'll know I completely forgot him! I forgot he existed. Sorry!!!!!!!I'm a dork!!!!

Nick and Stacey said...

I am sure he will be pretty upset about it. That is sweet of you to send something to the boys...thank you.

Grandma Mary Ann said...

Love the Party so glad you could be all together. Lovely Faye looks like she loved it. Love the Monster cake. Good choice Faye. I can't believe how long your hair was. But you are a cutie with short hair. Love you sweet family.

Thiago & Teri said...

Love these posts so much Stace! I didn't know about her temp going up...that is too scary. I am sorry you had to go through that, but so relieved it went back down. But oh the pics of those lil siblings together brings tears to my eyes. Stace, your kids are so beautiful. Oh those little faces just kill me. I want to kiss little Jay to death. I for one, am still glad they got to see each other. So much you don't think about....it just kinda hit me how much those lil brothers must be missing her and you. I love you. You tough girl. All of you. Hang in there my darling friends!