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.


The Nelsons said...

Can't tell you how much I love getting day to day details. We're praying hard for the biopsy to look good. And gotta say- who knew dad was a little person?!

Cute Carbines said...

Stacey, you look so gorgeous all the time. I would be in sweats and a pony tail, way to go!! I can't believe how much Faye looks like you! She is beautiful! Lucky girl. Love you all. Miss you all. Good job Miss Faye and boys for showing us what true strength looks like.

Holly said...

So many thoughts: love Faye's aggie outfit! Breaks and melts my heart that Nixon is helping Faye and is such a good sport. Love how close Mitchell and Faye are and that he wants to spend time at the hospital with her. Love all the help you're receiving. Love all the info you share. Love that her ANC is doing what the hope was and at a faster rate! Love the nurses playing games. Love the Wonder Woman! We're still praying, fasting, and sending our love.