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.


Tuesday, September 30, 2014

We are planning on a plan

Last Monday we were able to meet with the transplant doctor, Dr. Krance.  He gave us a better idea as to what to expect once we make it down to the Bone Marrow floor.  The schedule if everything goes according to plan is:  she will receive strong doses of chemo that will wipe out all of the marrow in her whole body.  That chemo will be given over 8 days and on the ninth day they will take 1 pint of marrow out of Nixon.  That same day (after they do what they need to do to get it ready for Faye) they will give it to her.  It is amazing what our bodies can do.  They put this marrow into Faye and it finds where it needs to latch onto and starts doing its job right away.  Then (if everything goes smoothly and perfectly) she will spend 4 to 5 weeks on the bone marrow floor.  Then she is clear to head home.  The part that we weren't ready for was that although she is home, she is not allowed to go out of the home for another 6 months, except for the visits 3 to 4 times a week back to clinic for them to check up on her, see how she is doing, and make sure everything is still doing what it needs to. There are too many possible complications and risks to list so we are going to expect best case scenario and have back up plans far enough back on the burner we don't have to continually think about them but close enough we have a plan of action if needed. 

Miss Rosie was nice enough to come down and hang out with Faye so Nick and I could talk to the Doctor uninterrupted.  (Forgot the cord to the camera, so a picture of a picture will have to do)

She received her first ever set of Legos. Rosie helped her put them together.  Needless to say she loves them.  The hospital is a good place for those.  I told her if she were to try and build them at home, I know of two little boys that could cause quite a bit of drama.

Our little attempt at some sort of school til we figure out how to make that all work.  Now knowing that she won't be able to go back to school for probably the rest of the year, some big decisions need to be made.

"Mom look at my new braids!"

We played "Go Fish". And she got every single group.....

For four nights in a row we were lucky enough to have Erica (Or "Ninja Nurse" as Nick named her). She is so quiet when she comes in, usually Nick will wake up for a bit every time someone comes in to check on Faye, but there were a few times he didn't even hear her. She is good.  The last night she was with Faye she came in and said Faye was her only patient.  She was waiting for someone to get admitted, but they hadn't gotten word that they were here yet.  So she asked Faye if she needed anything. Faye wanted her to play a game with her, but was too shy to ask.  As soon as they started playing "Old Maid," she was good to go.

More Lego playing and feeling quite well.

After the boys and I came up to visit for Jay's Birthday, Mitchell was feeling sad.  He said "I liked it better last time when Faye and I could play games together." Last time we had Mitchell who was old enough to know what not to touch and a newborn who would lay where you put him.  This time... not so much.  Having a 3 year old, and a very busy walking one year old, makes so much harder to come and hang out all together.

So one night Nick and Mitchell left the little boys with Grandpa and came and hung out with Faye and I!

Best double date ever....
Even after all these years its still hard having to say goodnight at the door ;)

A few silly faces.... just for fun!

Nick's Dad arrived on Wednesday to be able to watch the boys while Nick is at work.  And Fridays Nick and I switch, so Nick brought Grandpa down to be able to see Faye. 
 Of course Nick had to bring Nixon because we already knew from testing last time that he was a match for Faye, but because we are actually going to need him now, they needed to do more testing to make sure everything was ready to go.

He was great. They weighed him, measured him, and checked his temp and blood pressure.  He did awesome.
After all that, they took him to get some blood drawn.  First they started in his left arm.  The lady from child life (people who help calm kids down, explain everything, and help it seem not so scary) held my phone while Nixon was playing it with one hand.  The nurse poked his arm, but she couldn't get blood or find the vein.  She kept moving the needle around.  Believe me, I was squirming watching it, but Nixon would look over every once in a while and say ow, then go right back to his game.  After a while she wasn't able to make it work and he had had enough.  She decided to try the other arm.  At this point he still wasn't crying, but knew that what they were doing did not feel good.

So onto the next arm.  The second they poked him, he started crying. Luckily it worked the first time.  He cried the whole time until they took the needle back out.  Once they took the needle out, he stopped crying and said to me "Look mom 2 band-aids!" As we were waiting to see the doctor, he would tell me every once in a while that it hurt.... but in my book he is a champ!

Saturday morning was not a fun morning.  Nick called and said she had been screaming and complaining about her stomach for 20 mins. He didn't know what to do, or how to get her to stop.  Eventually she threw up and they gave her some medicine to help her stomach and to help her sleep it off.  She slept for a few hours and woke up feeling fine.
Also her Wonder Woman stuff came in the mail.  For those of you who don't have Facebook, Wonder Woman sent Faye a special video saying she was going to send her her Crown, arm Cuffs, and a special Super Faye cape. 

Now Faye wants to be Wonder Woman for Halloween!

I know we post a lot of what is going on here at the hospital, but there is also a lot going on at home.  Everyone has/is being so amazing...being totally willing to watch the boys while Nick works (before family got here), doing laundry, cleaning our house, mowing the lawn, bringing food, bringing gifts, sending cards, messages, and phone calls. The list goes on and on..... we truly do feel so incredibly blessed for everything that everyone is doing for Faye and our family.... it is amazing!

On Saturday at the baseball and soccer fields in our neighborhood, kids could buy a water balloon for $1 to throw at their coaches or brothers and sisters to raise money for Faye.  It was fun to see and hear about.
This picture is of Mitchell's baseball team getting their coaches.... they were such good sports!
 And then we were able to help fill water balloons for more kids to do the same to their coaches.  Nixon was an especially good helper.... or good for comic relief, either way we had a great time!

Faye is staying busy doing art projects.

This big box is all from her Softball team.  She was so excited about every single thing she pulled out of it.... it was like a never-ending box of fun.... giving Faye plenty to do!  This girl sure is loved!

This hospital stuff is starting to become more of a routine now.  Faye has started taking her mouthwash all at once.  She used to have to do it in two rounds because there was quite a bit of it.  Now it is no big deal! 
 She has to do 4 of these a day. The nurse brings in all four in the morning... Faye decided it was a good idea to number them, and even today asked me, "Do you think we should probably do my mouthwash now?"
 We are being pretty boring around here.  Our nurses come in just to check on us, and they always ask if we need anything. Faye always says no.  But today when the nurse came in and asked, I said "So what do you mean what can you do for us?  Like give us some examples of stuff you can do for Faye?" So she said whatever you want.  So of course Faye got her to play a few games.  Spot It, Frozen Memory, and Frozen Slides.  Faye won everything  We have this nurse for two more days... she has already declared a rematch!

Now onto the plan.  Monday morning her ANC (an indicator of how strong her immunity is) was 570, today it is 1190.  We were shocked, Sunday it was 0.  Because it was higher than we all expected, they decided that she will probably be ready to check her bone marrow on Wednesday.  The results of that will then let us know what to do next.  If there are still Leukemia cells present she will be doing another round of Chemotherapy. What Chemo types will depend on how much Leukemia is still lingering.  If they can't detect any she will be declared in remission and they will start trying to squeeze her in the marrow transplant schedule and begin that exciting process.  

So pretty exciting stuff going on around here.... Plans that will inevitabily change are beginning to form.  Although we know the plan will change 100 or more times it make us feel better to say we are forming one in our heads.... it all sounds great.

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 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!

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.