Still trying to get to normal!

I was telling someone the other day that it has been long enough since our lives got turned upside down.  You would think I would have life together more, by now.  She said "It takes nine months for you to have a baby, and they say another nine to get your life/body back". Well it has been more than nine months, and I still have things to catch up on.  Many things I have meant to do, like post the video of her coming home.  I did watch it the other day, still makes me cry.  I planned to keep up on this blog when we were home.... way down on the priority list.... it got trumped by survival! ;).

Either way, we wanted to share an article we wrote.  Some members of our church asked us to write an article for a blog that they have.  We were a bit hesitant.  But it was nice for Nick and I to sit down and reflect on the blessings and thoughts we had.  We could go on and on, and way to many details of every single tender mercy and how we feel so incredibly blessed.  But we narrowed it down to 5 basic categories, so here is a link to the article Aggieland Mormons.org 

We can't help but feel incredibly grateful for the love and support we were given.  Without a doubt it played a huge part in the outcome.  Its hard to understand why our outcome is what it is. Why other kids/ families didn't get the same outcome that we have had.  But when those thoughts enter my mind as they often do, I am reminded of a prayer that was said, in Faye's hospital room that first week four years ago "there are things that happen in this life that do not make sense, and probably never will make sense in this life". I have found such comfort in those words.  So for now while there is so much that doesn't make sense, one thing I am sure of is we do have a Heavenly Father that truly loves us so much, and is mindful of every single struggle, and trial we are each faced with.

Would you like to know what's going on? So would we!

Our apologies for the lack of updates recently on Faye.  Truth is we're not sure what to say.  We have been waiting for her ANC (a measure of infection fighting white blood cells) to be above 500 for 3 consecutive days.  Once that happens they declare 'engraftment' of the marrow transplant.  She hit 690 on Monday, dropped to 530 on Tuesday and hasn't been above 500 since.  No one is quite sure why.  It could be nothing and it is just taking its sweet time or it could be a problem. 

Two current theories are:

1. When they harvested Nixon's marrow they took all they could from him for it to be safe for him.  However, it was on the low end of what they would have liked to be given to Faye.  It could just be that it is taking more time because there weren't enough cells.  If we get to day 40 or so and we still haven't engrafted they may take more from Nixon and top her off. 
2. They tested for all sort of viruses thinking if she had one it could be causing some immune suppression. Results showed positive for one but the levels were such that it could be the cause of her being slow to engraft or could not. 
3. There could be a host of other things also. 

 She will be getting a bone marrow aspirate and biopsy done on Monday to test the cell levels in the marrow, to see how much of them are Nixon, and look for any residual leukemia.  So for now we continue to wait and hope for the best.  Keep those prayers coming to help Faye demonstrate once again that miracles happen everyday.  We love you all and are sincerely grateful for you. 

Nick & Stacey.

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.

 SUPER FAYE!

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

Hair we go again.......

Where to start?  I guess I will go with the pictures and add stories in!

One day a visitor came to help Faye write a poem, story, or essay.  She didn't talk much. He mostly wrote it himself with the few things he got out of Faye.  The poem is about Super Faye, who likes to eat Turkey Sandwiches.  It was really cute. When he was done helping her write the poem, he asked her if she would draw a picture to go along with it and he would put it in a book. 

Of course, right after he left she got right on with her artwork! 

She messed up a few times because this girl is a perfectionist... if it doesn't turn out just how she has it imagined.... it could be the worst thing that has ever happened to her. 

After 4 tries the 5th drawing was a winner!

SUPER FAYE

Sleepy!

Another successful dressing change for Faye and Emily.

 Don't take my picture!

She received her last dose of Chemo on Wednesday morning.  She had been throwing up quite a bit one morning so we decided to give her a little more medicine than what she was already getting to help with the nausea.  She didn't want to get the medicine because she knows it makes her sleepy.  But the nurse and I knew it would make her feel better!  So sleep that nausea away sweet girl!

 Nixon got to come visit for his last final check up before transplant.  Of course what would a visit be without raiding Faye's treat drawer? Fruit by the Foot is the treat of choice!

Nixon had to get one more blood draw.  When we took him into the room he instantly knew what was going on.  He didn't cry.  He just said "it hurts".  It was funny because he was saying all this as he is climbing into the chair and pulling the arm rest down, so he got it in front of him all by himself.  He did great.  Once they poked him he cried. I only had to hold his other arm a little bit.  The second they were done, he looked at the lady and said "I don't want to do the other one." Lucky for us, the first time worked like a charm and we didn't have to do it to the other arm .  Although later while we were waiting to see the doctor, he looked at both his arms and said "I want 2 band-aids."  Weird kid!

 So Nixon was here on Wednesday and came back on Friday for the transplant.  Guess who stopped by on Thursday?  Batman! Nixon loves Batman! So just for Nixon, Faye took a few pictures with Batman!

 Batman told Faye to tell Nixon hi for him! 

 Later on Thursday, Faye had to do a breathing treatment. It took like 45 mins. She just had to breathe into this thing until all the medicine was gone.  They give it to all the kids with compromised immune systems to help them not get pneumonia. She was a trooper!

Also this whole Bone Marrow Transplant is quite the family affair.  Nick went on Tuesday to give blood, so they could use it for Nixon if they needed to.  (They have the same blood type). They did in fact end up giving him a transfusion when he gave the bone marrow.  Just because he is so little and how much they took out of him.  If they did not give Nixon a transfusion, he would've needed to take iron pills for a month. 

Remember our friend Nurse Maria?  She came on Thursday to say hi.  She brought Faye some puzzles for her birthday! (Bone Marrow Transplant)

The morning of the Transplant.  I tried so hard to get Faye to help me think of words to the "Coronation Day" song from Frozen.... to fit "Its Transplant Day."  "They opened the windows, and the doors, I didn't know they did that anymore... who knew you would need so many IV pumps...." you get the idea.  But that is as far as we got... Faye was not entertained by my creativity.

I did, however, get a crazy morning hair picture to go along with my vision! ;)

My best friends from High School sent these bracelets to Faye and I. We got them at the prefect time.  Nick brought them to us the morning of the transplant when he came up with Nixon. 

"Your BRAVE is Beautiful"

Thumbs up from this tough guy.  He is ready to go.

Still waiting.... but having a wonderful time!

Then they moved on into another waiting room.... where he was given these cute little PJS!

Still good! We were amazed that this boy never once complained about being hungry... he is our eater!

While Nick had taken Nixon down to the PACU, Faye and I were left to entertain ourselves....I for one think she looks very entertained! 

As soon as they took Nixon back, Nick came up to be with us girls.  Faye had been waiting for Nick to come back so she could build the Rapunzel Lego tower with him.  Nick is the assistant. He finds the pieces, Faye puts it together!  They make quite the team.

I went down to wait for Nixon. The Drs said he did awesome and they were able to get everything they could from him.  They said all the nurses loved him, even when he was sleeping they kept commenting on how cute he was!   When they took me to see him he was partially awake.... meaning he sort of would open his eyes!   He kept trying to sit up, but you could tell he had no clue what he was doing.  Finally, we talked him into trying a popsicle.  He would just lay there, I would hold the popsicle, and when he opened his mouth, that was my cue to put the popsicle in his mouth.

Once he was more awake, I got a thumbs up.... everything was great.  He wasn't such a fan of having to still be hooked up to things like the IV, blood pressure, and oxygen monitor.   

Finished three popsicles and had enough of the nurses fussing over this cute boy--we were ready to head up and hang out with Faye!

 The cells from Nixon then had to have the platelets removed (because Faye and Nixon are different blood types) and then they came to Faye!

Before we knew it, we were ready to go.  The Cells were here and it was go time! 

 Nixon didn't feel like cooperating in any of the pictures!

 Never had I been so excited to hold a bag of "cells".

Nixon was starving, so he ate Faye's chicken nuggets...all at the same time I think.

 Before the transplant they had to give Faye Benadryl just as a precaution before getting the cells. So she was super sleepy.  She basically slept through the whole thing.  They told us that getting the transplant was pretty anti-climatic.  They just hang it and gravity does its magic and the cells work their way into her picc line. 

 They were going in slower than expected, so they had to keep coaxing the cells to move.  They said the longer the blood sits, the thicker it gets, so it sticks to the tube more. 

Child Life made up these banners to place in Faye's room!

And just like that the transplant was done! 

Saturday they started her on TPN because she wasn't eating enough and they expected her appetite to go down even more as an effect of the chemo.

Nixon handled everything so great.  He was jumping down the halls in the hospital by that evening and that night was jumping on a small trampoline we have at home.  Saturday, he would stop what he was doing for a second, put his hand on his back and say "oh my back" and then go right back to what he was doing.  He complained about it off and on on Saturday.  After that he was totally over it.

 Nixon came back Saturday to have the pressure bandages removed.  There were just some smaller bandages still on him.  They said to let those fall off, just leave them alone.  I guess Nixon didn't think he needed to.  On Monday, he took them off himself.  Here's the damage... not too bad right!

Sunday, Faye requested that Jay come visit.  So I loaded him up and brought him along.  It was good for everyone.  Nick and I loved seeing these two together and how excited they were to see each other.

Spent Monday hanging out doing our nails.  Although this girl takes after her mother and the nail polish had been picked off by that night!  ;)

Monday night we settled down to watch Once Upon a Time.  Faye asked if we could make some popcorn.  They told us to not force her to eat anything, but if she felt like it, go ahead and let her.  So I was happy that she was asking to eat something and I made us some popcorn.  She had a bit of popcorn (in her origami bowl she had made earlier in the day) and a few sips of root beer.  Not to soon after, it all came back up.  Poor girl was throwing up so much, in between it all she says "that is a lot of throw up."  In theory it was a good idea--popcorn and a show anyways!

 We had a friend bring Faye some Halloween stuff.  They brought Faye a candy bowl and a few treats to put in it.  We had these suckers and everything to make them into ghosts that we had gotten from the young women at church.  So when Faye had the treat bowl, she decided now was a good time to make the ghosts. 

 BOO!

And we also used the crepe paper streamers to create this spider web, complete with spider!

 She wrote on every tag!  "Happy Halloween, Trick or Treat, or Boo... Love Faye"

 Elementary kids from a school made and decorated pumpkins to go along with a book to have delivered to the hospital! Faye got the Junie B Jones Pumpkin.  I thought it was so cute!  (It's a fake pumpkin,but so darn cute!)

Low platelets lead to random dots!

 So she was given more platelets.

When we were here last time, Faye had a bucket that basically stayed right at her face when she got really sick.  She would fall asleep with the bucket wedged between her chin and chest, if you would try to move it, she would wake up.  I had written on it "Bucket of Comfort" and Faye decorated it.  So when we found a sharpie, she got right on decorating her bucket. 

This room works out perfectly.  Her IV pole can stay plugged in, and she can still reach the snack drawer to see what she wants.

As you can see she still doesn't love getting her picture taken. 

Yesterday she was able to leave the floor for a bit.  Levels in her liver have been a little high, so they wanted to do an ultrasound to make sure her liver is still working the way it needed to.  You can't see the mask so well, but from now on, whenever she leaves the floor, when she goes home, and when she comes back to clinic--if ever she goes anywhere--she needs to wear this lovely mask.

I really tried to sneak a picture in.... she wasn't having it!

They told us today the liver looked great and all the tests they have sent out are coming back in our favor!

And then of course the wonderful hair!  It finally started falling out on Wednesday and she already has quite the bald spot in the back.  You know when babies are small they get that bald spot from rubbing their head when they sleep.... same thing!  She won't let me take a picture of it.... yet!

But here is the bath just last night.  All of this hair came off just between washing and rinsing her hair!  I know a little gross... I debated posting this picture... but it is what it is!

Which is why we have moved onto using the "Sleep Caps." That's what she called them last time.  It's our way of containing the hair.  Otherwise it would be EVEYWHERE!  It still gets out a bit, nothing a lint roller can't fix! But we have found if we keep the cap on, we are able to contain it a little more.  When she wakes up in the morning we comb a bunch out, and after baths we lose a bunch more.  I forgot how crazy all this hair falling out is... it really is everywhere.   

So today is Day 7.  They told us to expect her to start feeling crummy on Day 4 or so.  And so far she hasn't.  Still throws up every once in a while.  The other day we were playing UNO and she looks up at me and says "throw up" and I have about 3 seconds to get her bucket.  Then she throws up and keeps on playing UNO like nothing happened.  This girl is tough.   But because we are on day 7 and still feeling pretty good we will take it and feel incredibly grateful.

While things are happening at the hospital, a lot is going on at home!  Mitchell has not been feeling well.  Every time he would go to eat something he would feel sick.  Nick took him to the Dr, and the Dr said it was gastritis which can be caused from stress.  Anyone who knows Mitchell knows he carries the weight of the world on his shoulders.  Off and on he has had his moments of break down.  He has had to deal with more than any 9 year old has to deal with and for the most part he does okay.  

Today was his last day of school.  We are anticipating Faye coming home and we have decided it is best to keep Mitchell out of school when she comes home to keep as many germs out of our house as possible.  We are going to hibernate for a good few months.  Besides clinic visits and Nick going to work, we are hunkering down!  So I will be doing homeschool with Mitchell and Faye... should be fun! I am lucky to have a wonderful friend in the ward that has homeschooled her kids forever, and she is helping me to figure out what the heck I am doing.  

You can tell that this is wearing on everybody.  We all have our "this is crappy" moments then we get over it, buck up and move on.  We realize it could be so much worse than it is. I was telling Nick earlier this week that I think I am crazy.  I try to feel some sort of emotion about this.  I think "I should be mad, I should be sad, I should feel something and I don't." But it hit me on Wednesday,  I had a moment of emotion where you think "what if we do all this and it doesn't work?"  Like I said, we have our moments, and then we get over it, toughen up and move forward.  But they do happen.

Like this post on Facebook from Nick:

I took Nixon to the hospital on Wednesday afternoon for his final lab work and exam in preparation of donating his marrow to save his sister this Friday. I hung out with Faye while Stacey went with Nixon in the clinic. I walked in the room and gave Faye a hug. She immediately began to cry on my shoulder because she didn't feel good. Her eyes were sad and she looked very tired. 15 minutes later I sat next to her with my arm around her while she vomited for a while into her bucket. Then she just asks for a tissue, blows her nose, lays back on her bed, and handles it with a bravery and courage that inspire me.

This experience has made me feel such a profound sorrow that I never knew was possible. However, it also reminds me of the profound love I have for her and the incredible blessing of being a father to such amazing kids and a husband to a wife I will never deserve. There is no greater joy than the unconditional love of family. Thank you all for lifting us up and helping take care of these five superheros! #SuperFaye #SuperStacey #SuperNixon #SuperMitchell #SuperJay #SuperFayesFighters

I am adding #SuperNick because he keeps this thing moving. He takes on so much more to make this easier for the rest of us.

And then tomorrow they are putting on this awesome event for Faye!  Mitchell is doing a Lemonade stand, there is a yard sale, and activities, photo booth.... everything that everyone is doing is incredibly humbling, amazing and generous. 

We usually switch on the weekends, but Nixon and Jay now have colds.  We told ourselves when this started we would keep Faye as safe as possible, so if that means not getting to go home for the weekend, and Nick not getting to hang out with Faye for a few days, that is what we will do.  I was going to finish up the Halloween costumes this weekend (anyone who knows me knows I LOVE creating those Halloween costumes). Good thing my mom is visiting, because she would always make us amazing Halloween costumes when we were little, so I completely trust her and her abilities to pull it together and I am incredibly grateful for her help.  It's not worth the risk of one of us bringing something back to her, even if neither of us are showing symptoms.  Another wonderful part of all this, plans are always changing... we are rolling with the punches!

If I have not learned anything else from this week..... update the blog more often.... these long posts get a bit overwhelming! ;)

And just for your enjoyment  a few video clips from the past two weeks!  Nick and Faye dancing, the actual transplant, Jay coming to visit, and this past week was our Primary Program at church (this is where all the kids 3 to 11 share their testimony on our Savior, and what they have learned in their classes over the year. Obviously Faye was not able to participate in person, but they had us record her part and they played it during the program!

Enjoy!