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.


Friday, October 10, 2014

Bow and Arrow

Oh my goodness, to say a lot has happened in a week and a half would be an understatement.  It has been very busy... good busy, but still busy. 
Faye was just getting used to hanging out in the hospital....
But come Wednesday the 1st it was time to get some work done. She was set to get a number of tests done, to check to see if she was in remission, and then if she was in fact in remission she would need a bunch of tests to get a baseline to see how her body is working now, compared to how it is working after the bone marrow.   Faye started out first thing in the morning with a Pulmonary test.  This is a breathing test to test her lung capacity and strength. She had to put her mouth on a tube, she had a screen in front of her with lit candles, and she had to try and blow all the candles out, she did great at this test.
Next it was on to the bone marrow biopsy.  They try and get it done as early in the morning as they can, because she hasn't been able to eat or drink anything since midnight, which really is like 9 because she fell asleep.  So here we were waiting... it was about 10 and she was getting a bit grumpy because she was hungry.  I couldn't help but stare at her feet and realize the importance of the test we were waiting for, this test is about to determine the path, and the plan for this journey.
After the Bone Marrow, we headed back to the room, she was super grumpy, she wouldn't even eat, which was the whole reason she was grumpy, was because she was hungry.  After she ate, she felt much better. 
Dr. Krance, the Bone Marrow Transplant doctor came and talked to us.  He told us that if everything looked great they were ready to take Faye on the transplant floor on Tuesday the 7th.  Oh my goodness, this was getting so close, this was getting scary, and ever so real. 
Again Nixon also had to come down on Wednesday for more tests too.  This time wasn't as successful as last time.  He knew what was going on, and he put up much more of a fight.  I ended up holding him on my lap, and hugging him as tight as I could.  They got it working in the first poke, and halfway through the draw it stopped giving blood.  So here we were again, getting more pokes than we want.  They tried the other arm, and they couldn't get it to work.  So we moved to a room with a bed, laid him down, I practically had to lay on him to hold him down, and they got it to work. I was trying to talk to him the whole time they were doing it, to get him to take his mind off of it.  I told him I am sure they could get him a popsicle, and between screams he said "I want a purple popsicle"  This poor kid....
 But nothing that a popsicle and iPad can't fix.  Again he got over it quickly.... he got quite the bruises to show for those pokes.
While I took Nixon for blood work, Nick took Faye to get and EKG, and Echo.  These are both tests to measure, and look at the heart. All of this Chemo really takes its toll on the heart, it causes the heart to work so much harder than it is used to.
It wasn't just a big day for Faye and Nixon.... Baby Emily got her PICC line placed.  She handled it like a champ.
And by Wednesday night the preliminary results came back that there is No Residual Disease.... Wonderful news, they still had to send and get more extensive tests done on the bone marrow, but for what they had back already this was wonderful news! And because of this, it looked like we were headed to the Transplant floor on Tuesday.
SUPER FAYE has done it again!
Wednesday night also I think this all got to Mitchell.  He came home from scouts just crying.  Nick talked to him to figure out what was wrong.  Mitchell couldn't really tell him a specific thing.  Nick talked to Mitchell and told him that sometimes there are all of these little things that happen, and eventually they all just add up into one big thing, and it breaks you down for a bit.  I know while we are all "Handling" this, it still is taking its toll, and we all break down at times.  But we realize we just need to take a moment, regroup and be ready to handle everything again. 
Nick is incredibly good at being aware of what each of us need.  He is so great at realizing what is important, and he is very in tune with each of our kids and what they need, every single time. 
When Mitchell woke up Thursday morning and was still upset, Nick decided Mitchell needed a vacation day......
So down to the hospital Nick and Mitchell came to hang out with us. 
This girl was excited!
We spent the day playing games, and building Legos.
Thursday evening we got the news that we could go home on Friday for the weekend.
Again this girl was SUPER excited! Big thumbs up from her!
Nick took Grandpa Meldrum to the airport in the morning, and then came to pick us up.  We were all packed up and ready to get out of here.
Loaded up and ready to go! 
 I don't know who is more excited!
One of Faye's friends had a Ding Dong cake waiting for her when she got home!  It was delicious, she loved it!
One of our Favorite things to do as a family are make homemade pizzas.  Everyone gets their own personal pan pizza, and can put whatever toppings on it!  Everyone is happy, and everyone wins.  Faye requested this as one of her meals when we were home! 
Grandma Mary Ann flew in Saturday night.  We are so grateful she is willing to come take care of the boys during the week.  She only booked a flight here, not sure when we are going to let her go home.... if ever!
The night before we went home, Faye and I got on Targets website and Faye picked out some new bedding.  And a lamp for her room.  She was so excited when we got home to see her new bedding.  Some friends had gone over on Friday to clean the house, and they added more decorations, drapes, and throw pillows to the room.  She loved it so much she got 12 uninterrupted hours of sleep on Friday night!  We had to keep checking on her in the morning to make sure she was okay. 
 "Floppy Hat Faye" she had hanging up in her room every round last time.  And all those hats were hanging in her room.  When we came home last time, Nick made a hat rack for her to be able to display all of her hats.  Most of them don't fit her anymore, but can't bring ourselves to do anything else with them!
Before we knew it, it was time to head back. Before we went home we had Nurse Maria as our nurse for 4 days.  And before we knew we were headed home over the weekend, I had told Faye that when I went home on the weekend I would make Pumpkin Bars and bring her some.  Nurse Maria heard of this, and Faye said she would share with Nurse Maria.  Well just because we went home, that was not stopping Faye from sharing with Maria.  So on Tuesday before we went to check into the 8th floor, we had to make a stop onto the 9th floor to deliver Maria her pumpkin bars!
Tuesday was a long day of waiting, getting checked out, and waiting! Dad is the best at passing the time!
At around 4 we got into her new room.  This girl never ceases to amaze me.  Up to this point every time she has had to get a dressing change (they change the cover of her PICC line) she has screamed and fought it like crazy!  But not today, today she took it like a champ, she held her arm right out, every once in a while we would hear a "ow" but that was the extent of her complaints. 
And of course Emily had to endure a dressing change too!   
After an already long day and Faye handling it all it was time to get hooked up, and start her medicine.  She wouldn't start chemo til tomorrow, but to prep for the chemo they started a medicine that helps prevent seizures (which the chemo can cause) and antibiotics, to help her body fight off sickness! When she figured out that she was getting hooked up, she whined for a minute "I don't want to get hooked up". But then she looked at me and just let them do it. 
Over the weekend when we were home we had a talk with Faye.  We told her that when we went back to the hospital there were going to be a lot of things that maybe she didn't want to do, but she had to do them, so either she could do it willingly, or they are going to have to make her.  And the sooner she did everything they asked her to do, the sooner we would get to head home. I guess the talk worked, because she was doing awesome!
After a long day of getting all settled, we were getting ready for bed.  I asked Faye if she wanted to say the prayer or if she wanted me to say the prayer.  She opted for me to say it.  I asked her what we should pray for.  She sat there for a minute, then she got a big smile on her face and held her finger up like she had an idea.  "We should pray for Nixon that he will be okay when he has to do the "Bow and Arrow" (thats what Faye calls it) next Friday". It is amazing to me these little kids, and their innocence.  We are truly grateful for all of you who read this, support us and pray for us.  It is definitely felt here.  And because all of you pray for Faye, she has the strength to pray for her little brother.
Again the youth in our ward sent us with a box of decorations, we are slowly working on getting her room decorated!  I don't know who is having more fun... her or me? 
 Although we might need some help, because anything that we have taped up, fell down in the middle of the night... Dad might have to come save the day, and fix it all for us!
Here we go again, tons of game playing, which she continues to win mostly! 
 More decorating.... she loves making the decorations, its the picture taking that is hit and miss!
My Aunt Kim had this made for Faye.  Isn't it amazing.  She told us that when her nephew was in the hospital after a horrible car accident, he wasn't able to sit up, so they had a poster made like this, and they hung it on the ceiling so he could look up and see this poster.  Everyone who passes Faye's room has commented about how amazing this poster is! 
Its the quote at the bottom that is truly amazing:
"A HERO is an ordinary individual who finds the strength to PERSEVERE and ENDURE in spite of overwhelming obstacles" ~Christopher Reeve 
You are all HEROS to us!  We couldn't do all this without your love, support, and encouragement.
In. The box was this "make your own owl mask" 
Once Faye had the mask made we decided we needed to send Dad a picture. With the caption:
 "Owl" see you on Friday!  "Whoos" excited!
Last night I was talking to Faye about her hair.
Me: Do you think I should cut my hair like you?
Faye: Mine will grow back faster! Because yours is falling out, and mine isn't.
(we joke, are you sure Faye got the chemo, because I am losing more hair than her)
They tell us it will start falling out.... but for now it is holding on strong.
Faye is feeling pretty good, she has gotten 9 doses of 16 of the first chemo.  And Sunday she will start the second chemo, which the doctors have warned us that this first chemo the kids handle pretty well, its the second one that she will start to not feel so well.
So like another cancer mom told us "Plan for the worst, hope for the best". So that is what we will do.
So there you go, I think we are all caught up.  The current plan is that she will get 8 days of chemo, rest next Thursday, and do the bone marrow transplant on next Friday! 
So watch out, Faye is coming... and she has got this!
Also in exciting news... the more extensive bone marrow tests we talked about.... they have all come back NEGATIVE!  Which in this case negative is good!


Katie Ellis said...

So glad everything is going as planned so far! Praying our guts out that it continues. You "owl" are my heros! Love you so much!

Thiago & Teri said...

wonderful news! I am just so relieved it kicked the cancer to negative with just the first round. Lets get this "bow and arrow" done and get the heck out of there. Love that Faye...i seem to find myself laughing AND crying throughout your posts. Her little personality just shines through and makes me giggle so many times. Love her feistiness. Grateful for it cause it is kicking cancers butt over and over again. Big week. Praying all day every day. Hope lil Nixon buddy does okay. Hope this next bit doesn't make her to sick. Love you guys. Be strong and know you are in my every thought. you got this!!!

The Nelsons said...

Awesome post, Stacey! LOVE all the details. I love that Nick is thoughtful and aware of what everyone needs. I wish I was more like that. Love you guys so much! Nervous for the crummy-ness to start tomorrow. Good luck! And tons of prayers!

Holly said...

Thank you so much for the detailed update! I love all the info and stories you share. So glad your mom is here. So glad the tests have come back with good news. Still praying for y'all. Love you'r sweet family!!

Burke said...

Bow and Arrow. Oh my goodness, to say a lot has happened in a week and a half would be an understatement. It has been very busy...