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.


Sunday, November 2, 2014

Happy Halloween!

Saturday the 25th was day 8 post transplant.  We are considering ourselves pretty darn blessed.  Faye is really handling this all very well. The Drs are all very happy with her progress. 
 Some friends made her this little mermaid outfit for fun.  Faye wears it around and the nurses love that she just wears it like everyday clothes!
 We have mentioned that we are just sitting around waiting.  Everyday Faye gets blood drawn and sent to the lab.  The doctors look at everything.  Like right now they can tell from her blood her sodium is low, so they adjust her TPN (nutrients through the IV).  But the waiting is related to her blood counts to begin recovering and evidence of the engraftment of Nixon's cells. So we look for her White Blood Cells to start coming up.  As of Saturday her White blood cells were .04 for the past four days.  But over this week they have sort of teased us.... up to .08 down to .05 and up again to .08.  Today they were at .1 something.  The Drs said today it looks like it might be early signs of engraftment but we still need to wait for those numbers to get higher. 
So here is Faye marking the "counts" for us.
 When Faye is home she will go into her room and play with these little princess dolls for hours all by herself.  She asked for Dad to bring them up to her the other day.  The second she got them, she quietly played with them by herself for a few hours.  I couldn't help but smile.  If she would catch me watching her she would smile, get shy for a second, and then go right back to what she was doing.
 Her hospital room happens to be right across from the playroom.  When we would stay on the 9th floor (oncology) we would never let her go to the playroom because if the playroom was open anyone could go in it.  Brothers and sisters of patients, whoever.  We were so cautious of her being around any germs we just avoided that place.  But this floor is much different.  Only patients or the parent caring for them are allowed into the playroom.  And also there are only 15 rooms on this floor so there are a lot less patients compared to the 36 rooms they have upstairs.  They are currently in the process of getting a bunch of brand new toys and Faye is happy to check them all out!
 Day 10 post transplant they send the occupational therapists and physical therapists to check on them.  A lot of the kids get really sick and don't even get out of bed. They are sent to help them regain their strength.  They both came and checked on Faye and said how Awesome she looked.  They were super impressed with her.
 Faye painted this sign and we took this picture!  We know it is not much but we are so thankful for so many things.  We are incredibly grateful for how well Faye has handled all this!  We are amazed at how people have just stepped in to help.  My mom has been staying at our house since the 3rd of October.  Our ward has really stepped up.  They bring us food, they clean our house, they are doing so much we are not even aware of all the behind the scene things that are happening.  Our community has also been so amazing.  Everyone came together last Saturday and had a yard sale, bake sale, carnival, and Lemonade Stand.  It was all very humbling and amazing.  
 We were just hanging out in the room and watching a show or something when Faye comes over and leans on my arm... I kinda loved it!  As crazy as all this is, I am loving being able to hang out with this girl.  I just look at her and feel so much love.  I am so proud of her and her positive attitude about all this.
 Every day she has to take a bath.  I start asking her around 4 if she wants to take a bath but she puts it off for as long as she can.  At the end of the day she tries to get out of it by saying she is so tired and when she finally does it she gets out of the bath and complains she is "freezing".  Not so fun.  So this particular night she promised me one round of "Daddy UNO", then she would take a bath.
 "Daddy UNO" = You each have piles of 2, 3, 4, 5 cards.  You start with the 2 cards, and when those are gone you can move to the 3 cards, then 4 and so on.  Faye loves to play UNO. Her and daddy came up with this way to play to stretch out the game and mix it up a little. It is basically like playing 4 UNO games without having to shuffle and deal in between.
 First Night sleeping without a "Sleep Cap" because her hair is done falling out in clumps.  She still has some hair but it just super soft white hair. Those fall out  one here and there so she doesn't wake up with hair all over her pillow.  But while her hair was falling out, it was nuts.  It was amazing how quickly it was gone.
Friends sent the wig with the mermaid clothes but this is the first time I got Faye to wear the whole ensemble.  She only wore it long enough to take this picture. That wig was itchy on that bald head.

 We got on Skype with Nixon the other day and showed him Faye's bald head for the first time.  His response: "What?  That is weird". We said,  "Yes. Faye has no hair".  He says, "No hair. That is impossible". Faye and I got a big kick out of it!  Nixon tells dad and grandma all the time that he wants to go to the hospital.  When he saw Faye and I on the screen and that we were both at the hospital he said, "What!?  You are both at the hospital. I want to go to the hospital!".

The boys went to a church Trunk or Treat on Wednesday.  We were going to Skype the boys to see them in their costumes so Faye wanted to get dressed in hers too.

A new doll house in the playroom!
 This is Maddie.  We met Maddie last month when we were upstairs.  We met her through a friend of a friend.  She is 7 also and just arrived on this floor on Thursday to start everything to get her Transplant next week.  Faye was so excited to see her.  Faye hasn't been able to play with anyone forever.  They spent the better part of Thursday afternoon playing games with each other.
 Thursday night we spent painting our nails and watching Hocus Pocus.  Every Halloween Nick tries to talk me into watching it.  He took some initiative and brought it to us last week.  Neither Faye or I had seen it yet so we were excited to check it out.  We both liked  it.
 Happy Halloween from Super Faye!
 Faye put on her costume first thing in the morning.  She was ready to go.  All of the nurses on the floor were super heroes also.  I really tried to get Faye to take a picture with all of them..... but I could never quite convince her it was a wonderful idea! At 2 they had a little party.  There were four stations set up with candy and a little game to play.  Faye went to every station at least 5 times... why not!

  They also had a cityscape. Perfect for super hero pictures!  This is the most posing we got from her.... what can I say, she gets it from her mother!

One of the Drs had a Superhero party for one of her kids a week or so ago. She brought a bunch of these felt capes, the background, and even a telephone booth too!  I took advantage of the capes and took this! It took a bit of coaxing to get Faye to want to take anther picture.
 Super Faye... Super Stacey!
 Here is her bit of candy.  When we were done she brought it in her room, dropped it out on her bed, and sorted it out!
 The boys went to Chick-fil-A night tonight.  After eating Mitchell started to feel sick (remember that stomach thing... still working on it). So he didn't end up going trick or treating. Luckily he already had the trunk or treat earlier in the week so he got a little bit of trick or treating that night.  Nixon ended up going out, but that's it.  I told Faye what happened.  Later I was telling Faye, "you sure have a lot of candy". She has a bunch of packages of M&M'S to hand out just in case but no one Trick or Treated here besides the party at 2. A nurse heard Faye's favorite candy was Twizzlers, so she brought her a bulk container of individually wrapped Twizzlers.  Faye said "I am going to save my candy and share it with Mitchell because he didn't get to go Trick or Treating!"

Just for fun I am including the boys, just because they are too darn cute!

 Big thanks to my mom. She did such a great job getting their costumes ready.  Mitchell was Batman when he was 4 so we had that costume already for Nixon.  But the other two my mom did everything to make them happen!

We sure missed these boys this Halloween! The plan was going to work out great.  Since Nick and I trade on Fridays we would both get to see everyone for Halloween. Nick would see the boys all dressed up on Wednesday night and then could come hang out with Faye for Halloween afternoon.  And I could be with the boys Halloween night.  But plans don't always work out. Because the boys still aren't 100% we decided it was best to just stay.  Nick is missing his girl,  and I am missing those boys.  But whatever we have to do to make it so we get lots of future time together we will do what we have to!

Just tonight as I was typing this post up this is how I found Faye sleeping.  You can tell she is getting tired of all this. Mostly not being able to sleep through the night.  Because not only do they wake her up every few hours for vitals, they have her on Lasix which helps get fluid out of her body. It makes her have to go to the bathroom a lot.  She gets that every 6 hours over a 24 hour period.  We are all getting excited to be home together again!  There is a chance we might be able to go home at the end of next week.  We are keeping our fingers crossed that everything lines up so that can happen.  We have learned that you don't plan on anything until they come to you and say... you are going home tomorrow.  The doctors have said that if everything keeps moving on its current pace the end of next week is a good possibility.  She needs to show engraftment (evidence of Nixon's marrow creating new blood), move to oral meds (not getting everything through her IV), and  start eating more so we can get her off TPN.  Still a lot to happen but the idea that there could be an end to this hospital stay is exciting! 

Until then we will just keep on keeping on. 
"Life is not easy for any of us.  But what of that? We must have perseverance and above all confidence in ourselves.  We must believe that we are gifted for something and that this thing must be attained."
-Marie Curie


Texasholly said...

I love their costumes! Your mom rocked it. Oh, and Faye wearing the mermaid outfit as every day clothes is adorable! Praying that she gets to go home soon!

The Nelsons said...

Happy Halloween Super Stacey! I'm so glad they keep that playroom safer so she can get out of her room and play. And that she has a friend on the floor now! How nice! I hope her transplant goes as well has Faye's has so far. You guys are doing so great. Way to keep it together and not go completely bonkers! Love you guys! Praying for you all day every day!