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.


Thursday, June 30, 2011

Back for More

The Fashionista: tilted hat, bald head, purple arm sock and two different shoes. You make it look GOOD, Faye!

Faye went back to the hospital today to begin Round 3 of Chemo. Everyone was getting anxious because they only like to have 30 days between the beginning of rounds and Faye was at day 45. Her counts had been up to 500 but when she was tested again today they had dropped to 460. They don't know why and talked for a minute about sending her home! Luckily they didn't and she had a bone marrow biopsy, some AraC, and was admitted to a new room. The preliminary results of the biopsy look good but more thorough results are coming soon.

Here's some pictures of Faye's short stay at home...

Making "Cutter Cookies"

Aaahhhh... normal kid stuff. Thank goodness she gets a little of that in the midst of all this. But, let's keep telling that cancer who's boss! YOU ARE FAYE! Round 3 here we come!

Friday, June 24, 2011

Let's try this again!

Wednesday we surprised the pants off of Nick by being at the house when he came home from work!  His Aunt Jodi was in College Station helping take care of the boys.  When the doctors told me that morning that we were able to go home I seized the opportunity to finally surprise Nick with something.  It is a difficult thing to do being that he is so involved with everything. I called Jodi to see if she wouldn't mind driving down to pick us up and she was nice enough to do so.  We know she is feeling much better this time around and "cutter cookies" as Faye calls them (sugar cookies in shapes) have been made!

On a side note we know we have many people checking into see about Faye's progress.  We would like to take the opportunity to help out each of our cousins who are trying to adopt.  They say word of mouth is a powerful tool in the adoption process so we thought we would put the word out.

Luke and Misty are our cousins (Nick's side) and they are one of those select few on this earth that have such Christlike qualities it really sets them apart. They are so super fun and cute and are amazing parents. If you know anyone who may be interested please tell them to click on their picture on the sidebar to find out more.

Heather and Ryan (Stacey's side) are wonderful people that are a boat load of fun to be around.   They are two of the happiest people we have ever met.  They have such a strong faith and would make wonderful parents.  We would love to see them have the opportunity.  You can find their story/bio on the sidebar link as well. 

Tuesday, June 21, 2011

Roller Coaster

Uncertainty and change continue to be our only constants in this process. (Stacey probably wishes her constant was Desmond. A little reference to LOST for those of you who were fans.) Faye and Stacey were denied the chance to go home once again. All was close to ready for a discharge but her levels are dropping and they won't let her go home until they are trending up again. So we live to go home another day. Maybe, just maybe, in a couple more days. That might change. It's uncertain. That we can count on.

Monday, June 20, 2011

It's not all that BAD!

Let's start out with some good news! Her fever didn't the morning she was at 97. They had given her antibiotics at maybe that was the key. Also some good news they say since her cultures are coming back negative, and she is doing so good, they say they are going to get us sent home again tomorrow, as long as everything goes well. And they also say that we should be able to get this weekend at home. But as anyone else knows who has gone through this knows...when they tell you at the beginning of all this "take it one day at a time" they were not kidding.

But for your enjoyment...or more for mine because I think this little girl is absolutely adorable here are a few pictures from right before we got to go home and such!

Before she left she was all ready to go again, getting dressed up to show off for those nurses.
But not before a quick blood pressure and temperature check!

Hanging out with all of her friends!

When we were packing the room up Faye put the letters back in order and was practicing her writing.

Nurse Katie! I just missed getting a picture of them hugging on our way out, and Faye wasn't about to pose and do it again, she was ready to go.

What would going home be without a garage bike picture?

And all too we are headed back! Believe it or not this is the first time we have ALL been together in the car since the day we brought Nixon home from the hospital.

Waiting in the emergency room! I wasn't really mad, although I look like I was not about to give a smile! Sure we were all disappointed, but whatever we knew stuff like this was bound to happen.

And lastly in honor of fathers day yesterday....this wonderful multi-tasking dad. Holding Nixon while filling out admission papers.

I am so grateful for Nick, he was the only one that kept it together when we found out we were headed back to the hospital. He is one amazing dad. I am so glad that he is the one to stand by me during all this. He really is the glue that holds this family together.
Hopefully next post will be more great pictures from home! We better get right on making those sugar cookies, cupcakes, and pizza this next time, cuz who knows when she will head back again!

Saturday, June 18, 2011

Too Good to be True

After only 6 waking hours at home, Faye is on her way back to the hospital with the whole family in tow. She was verging on a fever during the night. This morning Faye and Nick went back to Houston for her scheduled tests, afraid they would say she needed to stay due to the fever. But her temperature was just 99, so they got to go back home. At home she mostly laid on the couch feeling pretty yucky. Her temperature made it's way up to 101.4 and they called the hospital. They said she better come back, get readmitted and get on some antibiotics and that she most likely won't be able to go back home this time around. ARG! What a blow. They were so excited to be a normal family and really needed the break from the hospital. I think it's all begun to hit a threshold and is really wearing them down. I hope we can all increase our prayers to help buoy them up.

Friday, June 17, 2011

Yaye for Faye!

On Tuesday Faye started walking the loop. She pushed her baby around one time and rode her bike around 3 times. She must've remembered how much she liked the attention from all the nurses because anytime they would say something to her she'd get a little burst of energy and go a bit faster.

Wednesday she slept almost the whole day. In the evening Stacey tried to wake her up and she didn't want to. Stacey told her she wanted to go on a walk because Nurse Katie was there and then Faye was ready to go.

Thursday she had a little more energy and the doctors took her completely off the TPN (nutrition). And her ANC was 160!

Today... they say Faye can go home!! She once again gets a week at home while her counts come back up! Thank goodness her fevers didn't stand in the way. They've stayed away all week and she stopped throwing up and started eating on her own. So, they're releasing her today. She'll have to go back tomorrow for some tests and to her local doctor to get a transfusion early next week. And then back next Friday. They are all SO excited. Faye told them a list of things they had to do while she was home including "make cupcakes, rent a movie and make pizzas".

Have a wonderful week at home, Faye! You've been fighting hard and deserve it!

Monday, June 13, 2011

UNO....according to Fever FREE Faye!

Yep that is right...we made it through. Faye has been officially fever free for the last two and a half days! Slowly we are feeling better, not quite eating a whole lot, but today they are going to scale down her TPN (nutrition through her IV) so now hopefully she will actually become hungry and want to eat.

Now onto the more important things....Fayes UNO rules....
1. She decides how many cards you get, it can be anywhere from 1 to 4 usually.
2. She also decides who goes does she decide you might ask? Well she looks at the card that she will play off of, then looks at the card in her hand, if they match then she goes first, if not then you get to go first...usually it works out to her advantage.
3. She is very good at "her tricks" as she calls them. She knows that when playing with two people and she puts down a draw four, skip, reverse etc. she gets to go again, so she will play all the trick cards in a row she can so she can get rid of more of her cards in one turn.
4. She doesn't hide any of her numbered cards they all lay out, face up in front of her. But you know when she draws one of those "trick" cards, because she will hold it in her hand, and wait for the prefect moment to spring it on you.

I honestly wish all of you could get a chance to hang out with this little girl, and really get to see her true personality. Being able to spend this one on one time with her is a real treat. When she is feeling good, we have a great time. Just to see her smile about something is priceless!

Playing Pretty Pretty Princess with Dad and Mitchell!

Just last night she was playing the piano on the IPad, she hit three notes and then started giggling. She then hit the same three notes again and was so proud of herself. She then asked me "do you know what that sound is?" I replied with "no" She then played it again and said "that is the beeping of my IV cart". I couldn't help but laugh....I think we hear that beeping a bit too much!

Fayes friend Gage (little boy in older post) and his mom, stopped by with this balloon....probably one of the prettiest balloons I have ever seen.

So here is to getting Faye up and running again!

Saturday, June 11, 2011

Baby Steps

For those of you who have seen the the movie 'What about Bob?', congratulations. For those that haven't, you may want to skip the next few sentences filled with references to it. Good old Bob Wiley and Faye share a couple things in common. They both enjoy hand shucked corn and they both employ Dr. Leo Marvin's method of Baby Steps on their road to recovery.

Faye's baby steps have included more and more UNO games per day, less throwing up, less complaining about pain, more naps, and fewer fevers. I think UNO is key. She went all of Friday with out a fever or Tylenol. Her demeanor or energy level wasn't much better but we will take each small victory (baby steps). Early this morning around 3 am she did have a fever and was given Tylenol. Hopefully her counts will start recovering quickly and help her fight off this junk.

So with fingers crossed for some luck and arms folded in faith we are praying she is on the upswing of the infection.

Thursday, June 9, 2011

Infection: Day 8

Faye is just a tiny bit better, we think. They still have to be on top of her Tylenol or her fever spikes and even then, as it's wearing off Faye "checks out" and huddles on the couch whimpering and complaining about her stomach pain. She's still on oxygen as well. The Drs said this would help keep her heart rate down since when she's starting to get hot again she starts breathing rapidly.
She still hasn't eaten! In 8 days! That seems so crazy. Yesterday when Stacey asked her if she could eat anything she said no but added "I am going to be so hungry tomorrow!" So, she picked out her lunch from the menu and ordered it for today, but Stacey said that was a no go as well. Yesterday she was feeling up for a couple hours of UNO. She doesn't look very happy in this picture but she was saying things like "That's tricky" and "Boom Baby!"
This is when she got her PICC line dressing changed. When they walked in she knew exactly what they were there for and just sighed and stuck out her arm. Then, she got a little scared and decided she didn't want them to do it, but once they started there was no crying at all!
This is Faye sound asleep but still holding tight to her bucket!
No hands!!

Monday, June 6, 2011

Infection: Day 5

Around 4 this morning Faye started breathing rapidly. She got a chest x-ray and they think she might have pneumonia but they aren't sure. They did put her on oxygen and started a new medicine called Lasix. She continued breathing rapidly and her fever keeps spiking when the Tylenol wears off. Later today she will be receiving a blood transfusion, the IV nutrition, and an echo-cardiogram. The infectious disease doctors will be paying Faye a visit today as well and will probably advise to take out the PICC line just to be safe. At this point, they're not sure if it's still just the strep infection or if there is something else going on as well.

I'll update this same post as I hear more news today...

...Faye is still on oxygen. They think her right side lung still sounds kind of "crackly". And when she lays on her right side her oxygen levels go down. So they have her laying on her left side and think she's getting a healthy oxygen level. The infectious disease doctors suggested she get a CT scan to see if she has any fungus growing inside her. She did really good during the CT and laid still with her arms up like she was supposed to even though she was sad because she was cold.

I've got some new pics of Faye from this past week:

In Faye's new room (since she returned from her stay at home) there isn't a wall to hang her hats so they're on a clothesline in front of the window. Everyone still comments on how much they love her hats.
This is Faye and Gage. He's a sweet little guy that had to stay at the hospital for awhile too. Faye was content to walk by him with her baby. He used to love watching her ride. He would sit in a high chair outside his room and giggle when she went passed him.
Faye laying on her cooling blanket. They only set it to 2 degrees below her temperature so it was still 102!
Look how full her face is getting from all the fluids! I believe this was before they started her on the new medicine Lasix which is supposed to keep all the fluids making their way out.
Early Sunday afternoon Faye was feeling a little better for awhile and they decided to decorate her new companion. It was so good for Stacey to see a little smile out of her!
On the back, Faye decided she wanted to write her Aunt Annie's name. Then she wrote her own name and Mitchell's and drew pictures of them all. Faye's the one with no hair of course!
This was this morning. Pretty self explanatory!

*Update* CT scan came back negative for fungus! :)

Saturday, June 4, 2011

The Infection

Faye's infection is still causing problems. This morning her fever was down, she was sitting up and talking. Although she still didn't eat she did drink some which she doesn't stay down long. But after getting their hopes up that it was on its way out, she took a bad turn this evening. Her fever went to 104 again. She was shaking. And the nurses thought she looked really bad, like drained and pale I guess. The doctors took a look and said her blood wasn't circulating properly. They said she was "modeling" and her "cap refill" was slow. I think Nick said that's when you push on your fingernail and it goes white and wasn't going back to pink. The doctors told the nurses to prep some of the PICU guys because she might be coming up soon. But after a bolus and Tylenol through the IV (so she wouldn't throw it up) she started to get a little better. She was pretty agitated when she was awake for awhile but is sleeping now. They gave her Avitan for her stomach pain and that knocks her out. So, she is still in her room. And it doesn't look like the PICC line will have to be removed because the cultures from yesterday came back negative. Yay Faye! Keep Fighting!

Friday, June 3, 2011

Worse yet


Faye's worse this morning. Her fever's over 104 and they can't get it to go down. She's been throwing up more. And the cultures they took yesterday came back with bacteria. So they know she has some kind of infection. Nick says she just lays there really sad and won't say a word except to tell him she has to throw up or go to the bathroom.

They just told Nick that it is some form of strep. It is pretty common for AML patients to get, but can still get scary. They are taking another blood culture to see if it's responding to the antibiotics. If not, they plan to take her PICC line out in case it's the culprit of the bacteria. So, she'll have a temporary PICC line placed and have to get poked every time they need more blood. That would be pretty crappy. And if she's not eating by tomorrow she'll have to get some kind of nutrient supplement that is hard on the liver. If anything gets any worse she'll probably be moved to the PICU which wouldn't be too fun either.

Faye needs your prayers today!

Thursday, June 2, 2011

Feeling Crummy

Last weekend, Mitchell stayed over at the hospital with Faye and Nick! Faye LOVED having him there to play with. (Uno and bouncy ball games are a favorite.) Other than a few inevitable squabbles, they really made each other happy. On the first night, after getting ready for bed and laying down, Mitchell said, "I forgot to give Faye a kiss." He got out of bed and climbed into hers to give her a kiss on the head. Once he laid back down, Faye followed suit with the same routine. Then it turned into "Oh, I forgot to give hugs." So Cute!

On Wednesday, Nick and Stacey requested a new Primary Oncologist. The reason? After 2 months in the hospital, they still hadn't met her! They were told from the start that she would be in to meet with them and talk to them. Whenever they asked about her, the nurses or whoever would say they'd pass their message along to her. But, she never came by... or called or emailed... or even slipped a note in Faye's menu holder! Nothing. So, they've requested a new one and should be meeting with her/him soon.

Faye's ANC reached 0 on Tuesday. That's what they want, but it's also scary until they start climbing back up, which they have not started to yet.

Yesterday, Faye started slowing down. Her bike rides were lackluster and she wasn't bouncing around the room, which she does even when she's in need of a blood or platelet transfusion. Today, she got a fever of 103. She said her stomach hurt. She won't eat or drink. Her blood pressure is low. And she threw up. Yuck. Poor little girl. She's back on the IV getting Tylenol and antibiotics but other than that they just wait to see what happens. If her stomach keeps hurting she'll need an ultrasound. And if her blood pressure goes any lower she'll need some kind of nutrient supplement in her IV.

Feel better Faye!