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.


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"
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?" 
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"

Wednesday, September 14, 2011

See You Later Alligator!!

Well after:
134 Days at the Hospital
152 Days Total
125 Lab Draws plus
15 Blood Transfusions
30 Platelet Ttransfusions
4 Bone Marrow Biopsy's
4 Lumbar Punctures
4 EKGs
5 Echo cardiograms
7 X-Rays
2 CT Scans
4 Rounds of Chemo

This Little Girls Future is Looking Super Bright!
(When my friend Jenny came to stay with us and watch the boys, one weekend her and I got to do a little shopping, I found these PJ's on the clearance rack at Gymboree and just knew I needed to have them for Faye.  We both got a little teary just thinking about this and how much more it means to my sweet little Faye! I have been hanging on to them, and Nick and I gave them to her for her first night of staying home!)

None of this could have been possible with the amazing Nurses and Doctors at Texas Children's!  When Faye first got there she wouldn't say anything to anyone, but by the time the party was over, she was giving hugs, high fives, and taking pictures! 

 One last hospital dressing change to send us on our way!  Also at first Faye would scream the whole time this was being done, now when they walk in she says to them "I am going to be tough!"

 "Big Love" they came every Thursday with carts of stuff for the kids and families...treats, toys, and personal hygiene stuff.  Faye loved when these guys came, and they were always so generous!  These people are Awesome!
 One last weigh in...imagine at first it was such a chore to get Faye to even stand on this she just hops right up!
 Andrea...Nurse Practitioner from he purple team!    She will sorely be missed...we Loved our Purple team.  They have different teams of physicians on the floor with a different color to label each team. We got spoiled by having them switch us to the purple team every time we would get readmitted.  It was nice having the same people come check out Faye everyday! 

 Faye's new friend Aiden...he recently had a relapse of AML so they are back again!  But these two became quick best friends.  The second he would walk out of his room he would yell "Miss Faye" and be wondering where she was.  This picture brings tears to my eyes.  We were getting ready to go home, while Aiden was getting ready to head down to get a bone marrow biopsy to see if this round of chemo was working.  The first round that Aiden got after his relapse didn't work so they had do a new round of chemo trying different medicines.  As they left I couldn't help but cry.  It made for such a bittersweet day, we were heading home, but the McSpadden family was waiting to hear news that could change everything!  Luckily we found out later that day that the chemo was working!  YEAH...such wonderful news!
 Love this boy Aiden, you cant help but love him.  And his parents, they are wonderful!  They have been great to have around to be able to talk to.  I will miss our walks and talks following Faye and Aiden around  the halls!
 Stephanie (another Nurse practitioner from the purple team)  Giving Faye a "WAY TO GO" high five! 
 One last hug to send us on our way!
And one Final shot to say.....WE DID IT! 
I think its funny to look at this picture compared to our first pictures!  At first we were geared up ready to go, but these last pictures you can tell this was wearing on us!  Especially towards the end I would just tell Nick "I need a vacation".  But being home is just as good as any vacation!  Its been super fun being at home. I will post tomorrow about the Welcome home party, and the fun we have been having!

Thursday, September 8, 2011

It's a PLAN!!!

Five months ago today we took Faye to the doctor because we just knew something wasn't right! Our doctor sent us for blood tests and x rays. The next morning we received a call saying we needed to get Faye to the emergency room right away! And that is when our life forever changed!

Those first few days were a whirlwind! But some moments that are forever in my memory!
Like this room....I will never forget getting asked to come sit in this room (shown below), they shut the door, Nick and I are sitting next to each other with Nixon in the car seat on the floor. And we are facing three doctors! They tell us Faye has leukemia and the type she has is AML. She will be in the hospital for 6 months, with a possible chance of getting to go home for a few days in between each round. That's about all I remember, that and looking at a bunch of papers they kept showing us and asking us to sign. Then it seemed like 6 months was forever away!

Faye has been through so much on this journey and she has been so tough through it all! I am amazed at what a strong little girl I was given! She truly is amazing!
Since we are only doing four rounds....our treatment has come to an end at five months! Yep tomorrow is five months to the day since Faye went to the emergency room and tomorrow is when they said we get to go home! It seems so surreal! Looking back, like I said, 6 months seemed forever away! But we have done it!
The plan is we will come back once a week to check levels, and get transfusions as needed! Then in a week or two when her counts are good and recovered we will get another bone marrow biopsy. Once she has shown she can hold her own as far as her blood and platelet levels they will remove her PICC line and we will then have clinic visits once a month, to make sure this cancer stays away!

She will still be confined to home...or an occasional visit to the park for the first little bit. After a month or two she will be able to do more normal things like go to the grocery store, start attending church again (which she is so excited for), and going to the movies (which her dad is so excited for).
So tomorrow have a party for Faye! Have a party to celebrate that all of your support, love, concern, gifts, and prayers have given all of us our own little miracle! Don't party too hard because we still need the next miracle or keeping it away.  Keep that love and those prayers coming!
I think it is very fitting our friends from Logan are having a movie night in the park showing Tangled if you are in Logan go check it out!
At Gibbons Park 800 w. 2475 s. Nibley, UT 8:30-11:30
Faye would love to be there!

This is Faye showing us where her ANC is at. When it was 20 we told her that her ANC was at her knees, then it went to 40 and we told her it was at her it is 80 so we said it is at her neck! They told us when it gets above 100 we could go home. So Faye knows when it gets to her head she is good to go!
So we will see you all at HOME!

Monday, September 5, 2011

Let's get some ANC!

We've gotten a lot of questions about when Faye will be able to go home and why she hasn't been able to yet if her chemo ended so many days ago.  The chemo essentially wipes out her immunity and drastically lowers her white blood cell count.  On top of that she regularly needs blood and platelet transfusions. The thing to track is her ANC.  When her counts begin to recover and are on an upward trend they will let her blow this popsicle stand.  Below is an explanation of what ANC is and how it is calculated: 

"The ANC is a way for doctors to scientifically determine the stage that the immune system is in after response to chemotherapy.  ANC is the real or actual number of white blood cells that a patient has to fight an infection. White blood cells are the part of the patients blood that work against possible bacteria, fungus, or viruses that may make the patient sick. A normal ANC is greater than 1,500. A safe ANC is greater than 1,000. After chemotherapy a patient's ANC may drop low as 0. When the ANC drops below 500 , it is important that patient's remain away from crowds and people who have colds, flu, or runny noses. If a patient is in the hospital with ANC below 500, he will be placed in protective isolation. This is to protect the patient from being exposed to possible infections.
Doctors are able to determine the ANC by using the CBC (Complete Blood Count) results drawn from a patient’s blood labs. In determining the ANC, the “WBC or White Blood Cell Count, ” Neuts or Segs”, and “Bands” should be identified from the lab printout."

I will spare everyone the formula to calculate the ANC because doing math was bad enough in school.  No need to relive those bad memories.  As of this morning her counts look like this:
White cells: 0.53
Segs: 3.4
Bands: 0.0
Hemoglobin: 9.8
Platelets: 62
ANC: 20

Before today her ANC had been zero for 17 days.  Hopefully within a week it will climb and get us out of here.  And now onto to the visuals.
Faye got the nurses in on her Hat wearing!  Faye wanted them all to be cowboys! 
 When Grandma Mary Ann came she brought some corn from Grandpas garden on the plane with her (who knew you could do that?).  Anyways, she left some for Faye. We cooked it in the microwave...turned out pretty good!  Of course we didn't have any corn holders so we had to improvise, the knifes worked out great!
Sometimes I will get Faye peas at the hospital.  She doesn't eat them and I say "Faye you like peas" and she replies with "I only like peas from Grandpas garden."

Once a week all of the tubing has to be changed!  Faye has taken on the task of helping the nurse change it!  This last week when the nurse was doing it Faye asked if she could help.  So the nurse said sure and gave Faye the old tubing, so they could throw it away!
 Loading up all Nixon's milk!  Just because she is in the hospital doesn't mean she doesn't have to earn her keep!
 On Saturday, Mitchell, Nixon, my Mom and I went down to the Hospital!  My mom was nice enough to stay with Faye while The Boys and I went to an Astros game.  Faye was just as excited to hang out with Grandma as Mitchell was to go to the game!
Of course before going dad had to get in his teasing time!
 And play a little catch the ring on Faye's Legs! 
(This picture cracks me up Nick with his tongue out, and Faye closing her eyes...serious concentration going on here!)

Nicks sister Katie told us about Kid History.  You should check it out, it's hilarious. My mom took a picture of us watching it!  Everything is much better watching it with Nick.  He has this contagious laugh, that when he thinks something is funny you cant help but laugh!
One day when the doctors came in Faye was playing Doctor with Dad. She was bandaging him up and asking him if she could listen to him, so the Doctors went and got Faye her own stethoscope and flashlight.  It's hilarious to see her "listen to people".  She asks them to take deep breaths while listening to their lungs, heart, and stomach.  Then puts the stethoscope around her neck and grabs her flashlight to look in your mouth!  She has got it figured out! 
 At the game.  The Hess Corporation sponsored the event for the patients of the cancer center and their families.  It was a great time and very generous of them.  It would have been even better with Faye but we were grateful that grandma could hang with Faye for a couple hours so we could spend a little time with each other outside of the hospital.
There was a giant screen right behind us and as you can see Nixon was mesmerized!
 The boys loved it!
 Typical Nick picture!
So there you go, we have been having a great time!  Getting excited to all be home!