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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Thursday, September 22, 2011

We could get used to this.......

The following was written by Stacey and has been reviewed with comments and/or corrections have been made by Nick (shown in blue).
We woke up the morning they were sending us home and the line for her hats had broken, and fallen down....I think the hats were just as ready to be done as we were!
 Taking it all down....after we decorated for Faye's birthday last round we decided for this round we should do it again!  So we had made these little strawberries and swirlies!
 Dads contribution....this is just a little example, but he wrote Fayes name all these different ways and hung them up! 
One Last peekabo through the hospital bed! 
 Yeah last Hospital Chemo!
 A few families from church made signs and were waiting on the side of the road for us when we got home!  I had no idea, Nick knew what was going on!  It made me so happy.  It's a good thing I was wearing sunglasses.... Faye was so excited to see Mitchell (Mitchell was right at the front of the kids so as we drove past Faye saw him.  As we slowly we kept driving, she started to cry, so we stopped the car and got her out so she could see Mitchell.  We decided she was confused, she didnt understand why we were leaving Mitchell)...and then of course Nixon!
 Can you believe all this "STUFF"  we had in one little hospital room!  Me neither! 
 Our friends at church were so wonderful...when they welcomed us home (as if that wasnt good enough)  They had this big basket of treats, toys, and a few other things..........they are so wonderful!
Getting back into the swing of things!  Helping Dad clean out the car!
This is definitely one of my best pictures.
What would time at home be with out a fort?  The whole room rearranged, sheets tied to the ceiling fan....Dad really knows how to do it right!  The kids loved it!
 And of course what would a fort be without treats and a movie! 
Grandma was even nice enough to climb in!
 Plenty of bike rides!  It makes us so happy to see her riding a bike, because before all of this happened the idea of her using her legs to even walk, let alone ride a bike...unheard of!
 Little Miss Thing!
Faye always wanted to play wedding when she first got home!  Mitchell has decided he does not want to play wedding!    He had a really hard time at first, cuz he is such a sweet brother!  He said "I know I should just do whatever Faye wants to, to make her happy, but I just really dont want to play wedding!"  Poor Mitchell, Faye even found a ring box, put one of her rings in it and wanted Mitchell to give it to her.  We told her Dad would play wedding with her, but that wasnt good enough, "He's already married" she said.  So we told her that when Nixon gets a little bigger she could probably convince him to play wedding with her...she decided that was a great idea!  So now poor Nixon!
I feel like this is the most accurate game of marriage I have ever witnessed. There a few different ways to look at this.  1.  I told Mitchell that it's really good practice.  Marriage is all about doing stuff for your wife that you don't want to.  2.  The first reason gives some reasoning to Mitchells argument of not wanting to play.  If he is going to have to go through this later he should be able to enjoy the freedom while he's got it.  3.  What they both don't know is that them arguing about it makes it seem like they are neck deep into a game of marriage already. 
I think I will be playing out the third scenario once Stacey reads this.  I love you Stace.
 Oh, the talks we need to have with her are endless after coming home!  It is really hard coming from the hospital where we were happy to get her to eat whatever she would, sleep whenever she could, and do whatever to make her happy!  Now trying to get her to go to bed at night has been the biggest challenge!  She flashes that sweet smile at her dad and she can do whatever she wants!
I really don't see what the big deal is.  This is a strategic move on my part.  I am trying to bring her in as close as I can so that when the time comes for me to scare off boys and convince Faye that none of them are good enough for her she will believe and trust me! 
She gets frustrated easily when she doesnt get what she wants and storms off to her room, or cries!  It has been really hard for me to not get frustrated, becasue you think of all she has been through, but then also we have to get back to normal and she has to learn to follow rules, and share!  Its really is a bit of a challenge!
Again, my fault.  I still struggle with this in my 30's.  She's a four year old girl and it comes with the territory.  I think it has been just as difficult for us, er ...... me, to not give her everything she wants as it is for her not to expect it.
We went back to clinic last Monday, they had an art show on Sunday with art the cancer kids had drawn, luckily it was still up on Monday so we could see it!
 "Rainbow Princess"
(Faye made this in the hospital one day with dad)
Fence Post Girl, one day when we went into clinic Faye made this while we were waiting to be seen by the doctor!  We werent able to finish it, but Faye had all the stuff picked out, so someone else finished it for us!  We were happy to see this little girl in the art show too!
 This past weekend Aunt Holly was able to come visit!  It was a good weekend!
Is it just me or do both of my boys look more feminine than Faye in this picture? (Nixon's raised limp hand as if responding by saying "fresh" and Mitchell's bright pink shirt) 
Grandma and Holly left on Sunday, then Grandpa Mike came in that evening!  With him he brought this Hannah Montana wig...Faye was a big fan of this long hair!
The other day she comes into the bathroom holding two little elastics and tells me she wants her hair in ponytails.  She was dead serious, so I said: "Sure. 
We will see if we can get two ponytails in there". (She does have a few "longer" strands hanging in there)  Just as I was going to see what I could do she got sad, dropped the elastics, and went and sat on her bed.  I followed her into her room and asked her what was wrong.  Our conversation went like this:
 "But I dont have any hair to put in ponytails" 
"But you will one day"
"And is it never going to fall out again?"
"Well if your sick comes back your hair might fall out again"
"Ugg but it is taking forever"
"I know but one day it will be back and long and we could put it in ponytails, braids, or whatever you want"
"okay"
This conversation just broke my heart.  She has never cared yet that she doesnt have hair...or realized it I dont think.  But today she was truly devistated about her hair.  I wanted her to know that it might fall out again, so she would be okay with it if it happened again! 

And of course Faye puts Grandpa right to work, being her assistant while she paints her nails!

We went for another clinic visit yesterday!  Faye passed the time by writing her alphabet on the table!
"Hmmmm what letter comes next?" 
Counts:
WBC: 1.41
HGB: 10.1
Platelets: 141
ANC: 640
Everything is looking good the doctor says, so the plan is to go in next Tuesday for a bone marrow biopsy, and get her PICC line removed! 

When we were getting ready to go to clinic Faye was telling me we needed to get all her stuff in the car, I think she was confused when I told her we weren't staying!  After clinic we went to see our friends on the 9th floor, when we got up there Faye says "Now which room is mine?" 
We took this little picture up for the nurses to hang in the break room!  It was Fayes favorite thing to scare the nurses, and they were always nice enough to play along...even if they already saw her!
 She is having a wonderful time holding this brother of hers!  You can see he really likes it too!
Being home is wonderful!  It has occasional challenges but that just makes it feel somewhat normal again!  Fayes loves to play with her dolls, dress up, ride her bike, take Mitchell to school..and pick him up, or make "Recipes" (help me cook).
So I guess you could say " We Could Get Used To This"....or better yet "We Are Getting Used To This"

11 comments:

Eric and Jenny said...

Oh you guys this makes my heart happy reading this post, seeing you being back to normal again. But I must say I am wiping the tears thinking of little Faye devastated about her hair. Poor little dear.

Oh also the thought of her being able to ride her bike, also another tear jerker. Love you guys, Stace I feel like it's been awhile since we talked I will call you this weekend.

Love you all.

Tanner and Kristin said...

Yay! So happy your sweet family is home and all together again. What a tender, sweet blessing. I was in tears...until I read Nick's comments about Nixon's limp wrist and Mitchell's pink t-shirt. I love that even though you have been tried and tried, you still manage to find the funny, light-hearted side of things. We love your sweet family to pieces and think of you ALL the time :). xoxoxo

Lori said...

Like Jenny said... THIS MAKES MY HEART SO HAPPY!

Ashley and Devan said...

Faye looks cute in every single picture, that girl has great style. I love it.
I've probably never told you this, but when I was a little girl I got chicken pox really really bad. They covered my scalp and almost all of my hair fell out. When it did grow back it very fine and thin. I have always been very self conscious about it.
I remember though that My Mom used to brush what little hair I had, and then she would brush down my back to practice for when my hair would grow long. It may sound silly but as a little girl it made me feel so much better.
Hugs for sweet Faye, on a small level I can relate to how she's feeling about her hair.

Lark (SparkyLarky)@ Lark's Country Heart said...

Welcome Home, Welcome home! I am so happy for everyone in your family!!

Thiago & Teri said...

Oh you guys so good to see you all home together again. I can't believe how much those 3 kids look alike, you can definitely tell they are siblings. So sad about Faye and her hair, but it will come, it sure will. And she is so beautiful either way, I love her little face!!!

These pictures just make me happy...bike riding, forts, eating treats, "wedding"...all of it. All of the things a little 4 year old should be doing. Soak it all up sweet Faye, you deserve it!

Piano Mom said...

I LOVED THIS POST! (wellI, all but the part about her not getting the two ponytails done on her hair). I love to see Faye riding a bike and being at home doing normal kid things. It is an adjustment being home. We're still trying to iron out Erin's eating habits. Calling on the phone for food from the hospital kitchen at any time of day or night really engrained in her that she could eat whatever she wanted whenever she wanted. We have really been stressing healthy foods and eating at "meal times" not just all day long.

I am so excited Faye will be getting her picc line out soon, that will really feel good and she'll start looking less and less like a chemo patient.

Her hair will grow and soon enough it will be hard to remember what she looked like without hair.

We love you guys, we are so happy things are going so well and we continue to hope that Faye will stay in remission!

Love, Jill

Rachel said...

We are so excited that Faye is all finished with treatment! There's something about being able to all live under one roof again that is amazing. I remember how good it felt when Rachel finally made it home for good. You all look so good--especially little Faye!
There's no place like home! We will stay in touch...
Love, Frost, Marie, and Rachel Steele

Isabel said...

Watching the video made me teary eyed! Its so awesome to have so many people that care! IM SO GLAD YOU ARE HOME AND YOU CAN BE TOGETHER!!! LOVE YOU ALL!!

Kristi Rowley said...

What a wonderful video! Brings tears of joy! You guys are such a wonderful family. So glad You are all home!

Melissa, Benton, and Cambree said...

Too cute! Such a fun post to read! I am so glad you are all home together as a family! I loved reading about the transition from hospital to home. I am sure it will take a little while before it's back to how it was. I bet it is confusing for Faye to go to the hospital and not have to stay. I love all your pictures! I am so glad her check up was good, you'll have to keep us updated! So happy for you guys!