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.

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Monday, August 29, 2011

HAIR we GROW again!

Yep that's right, we are growing some hair back already. It has been about a week since I have noticed that she is getting some hair! I would try and take a picture of it, but that is also the exciting part.....it is still the white blonde! But with that comes the fact that you can't see it. We had heard people say that their kids hair grew back darker, some said lighter...all said thicker! So far it seems that Fayes is growing back the same, but we will have to see as it grows more.



Grandma came on Sunday and brought this headband to Faye! She has worn it all day long! It cracks all the nurses up, especially when Faye takes her hand and flips her "hair" back over her shoulder cuz it is getting in her way!

I thought it would be fun to take a look back at Fayes hair in her lifetime....or lack thereof!
Newborn


Six Months


One Year


Eighteen Months


Two Years


It's amazing what six months, a few curlers, and some hairspray can do!
Two and a Half


Three


Three and a Half


Faye has never really thought she has lost her hair, because she still has a few little hairs hanging in there! She has even tried to comb it a few times, because it looks "crazy"!
I am excited for her hair to get growing back, I was just getting used to doing her hair....usually she was pretty good about sitting there and letting me do whatever I wanted to, but some mornings it was just "no braids mom, I just want one ponytail!" who could blame her, sometimes I would take a long time doing her hair!
No matter what she looks like, hair or not....she is still one super cute girl!



(my friend made this super cute outfit for Faye...you can check her out on Facebook "Sack Cloth Whimsy")

Thursday, August 25, 2011

Are you ready for this?

First of all I want to say that we have been fever free for about three days now! Nick and I couldn't be more relieved! It's so nerve-racking when they have fever...and we don't want to relive round two again! So we are ecstatic that her fever has gone away! She still has a bit of a cough, but feeling pretty good overall! (as I was typing this up Faye was taking a nap, she woke up coughing and then threw up, she has always had a weak gag reflux.  If she takes to big of bites of food she throws up, but that still doesn't make it anymore fun when it happens) We got taken off contact precautions yesterday and Faye and I couldn't be happier to get out of this room!  At least I could leave the room for a few seconds, but Faye was stuck....and got especially stir crazy! And they were able to do a power flush on her PICC line, which more or less fixed the problem of it being misplaced. So that is also great news!

Being stuck in the room you can only do so much:
Watching TV

Reading magazines


Dress up ( the blanket is her LONG hair)


Manicures (Thanks Katie for being a good sport)


(finished product)


Pretend (we would sit on the feet of her tray table, and this was her steering wheel,
she would drive us to the store)


And coloring!


Then we finally broke out.  This is Faye all dressed up with lots of places to go!
Can't forget to take Duck Bird out on the town!



Like I said, if the cough would leave we would be good to go!

Now onto the "Are You Ready for This" part of my post. As some of you have probably figured out or even heard we decided not to go the route of getting a bone marrow transplant. After many discussions with our doctor, and our doctor discussing Faye and her specific situation with other doctors, we decided that a bone marrow transplant was not the path to follow for Faye! Believe me it was not a decision Nick and I took lightly, nor our doctor! We feel a real sense of peace and comfort with our decision.

After that major decision had been decided we were then given the information that Faye might only get four rounds of chemo rather than getting the five rounds of Chemo. It was something that was brought up before we finished round three, but our doctor said she was still doing some research and trying to figure out what is best for Faye! So that, yet again, gave Nick and I something to think about. When we came back to start round four, the word got out to us that this was going to be our last round. Our doctor was out of town, and we wanted to wait for her to return so we could ask her all our questions. We were nervous to say the least.  We thought: "Why not just do that last round to make sure we have taken all precautions against this cancer coming back".

In discussions with our doctor she told us that based on current studies the fifth round doesn't make much of a difference. It's one of the curses of getting AML.  They still arent quite sure the best way to treat it.  I guess the medical field in general always has research going on, trying to figure out the best way to cure cancer. The study has found that if the cancer was going to come back, it would come back wether you got that fifth round or not! Our doctor also explained that the current protocol treatment for the fifth round involves using higher doses of all of the medicine...so whatever the chemo hasn't killed up to this point, the fifth round would for sure get rid of anything left.  Giving the kids such high doses of medicine sometimes proved fatal.  The fifth round seems to see a much higher frequency of getting the strep mitis infection, which Faye got in the second round and was borderline on being sent down to ICU for a number of days. This infcetion itself is also fatal to many who suffer it in the fifth round. 

So after weighing everything we have decided to put our trust in the knowledge of our doctor, and the many others in the cancer center that concur this is the right path for Faye, and Faye is done with Chemo!  We are just waiting out the lengthy process of her immune system working it's way up, and when that happens we get to go home! Not for a few days, not for a week....but for good!  It has taken a while for this to really sink in. Does it make us nervous? Sure.  Is it crazy to think that living in the hospital is almost over....ABSOLUTELY! We were just getting used to all this! No more jokes of Nick and I having joint custody of our kids! I get the boys on the weekends! And he gets them during the week! No more nannies (friends, grandparents, aunts) at our house (not that this would have been possible without them)!  The diffiuclt thing to swallow is there isn't a proven treatment method that is a gauranteed cure for every kid that has AML, or any cancer, with no risk to the child.  Each has a different set of circumstances, responses, and reactions that affect the course.  We feel very blessed to have such wonderful doctors who are so knowlegeable, well connected, and go the extra mile to look out for Faye's best interest.

After we go home and as soon as her counts get a nice good cushion she will have to get one more bone marrow biopsy to make sure everything looks good!  It sounds like we will be routine visitors at the cancer center clinic for blood work and various other things for the first few months.  After that the visits will be less frequent and in just 5 short years of negative test results we will host a graduation ceremony for Faye to celebrate the move from "in remission" to "cured"!  I am sure it will be difficult to cope with the fears of relapse once we finish but we are just trying to enjoy every moment we have together.  Cancer or no cancer, life is precious.

Time has flown by these past months and I am sure we will have more feelings to share as our time gets closer.  For now,  I wanted to let you all know what is going on. I could keep rambling...so many thoughts, and so many feelings! All we can say right now is Thank You!




Sunday, August 21, 2011

Let the ExCIteMeNT begin.....but don't stay TOO long!




Well our plans of being boring were short lived! Yesterday she ate hardly anything, and she seemed not quite like herself. Last night her and I were laying on the couch watching Gymnastics....Faye was super concerned about the girl that hurt her knee. But she was feeling a little warm to me. I always hesitate having them check....I try to convince myself I am just being paranoid, but its better to get a start on it, if anything is wrong! Sure enough last night Faye spiked a fever of 103, we gave her Tylenol, and it quickly came down, but then again at 5:00 am we got to 102. She woke up in good spirits this morning, so we will see as the day goes on. The doctors came in this morning and were impressed with how well she was looking, after having a fever last night of 103.



(Three medicines in the morning....and that was even before the fever!)

Yesterday they sent us down to get x-rays of her chest to make sure there was no pneumonia forming in her lungs. Her lungs looked good, but the x-ray showed that her PICC line, which is usually supposed to be going down, had somehow moved and is in her jugular.....it's hard to explain, but they showed me the x-ray and her PICC line is right next to her throat, when it should be more down to her heart. It is defiantly something that needs fixed, and hopefully tomorrow they can reposition it. Luckily they can still use it to send antibiotics in, at first they thought since it had moved so much they would have to place an IV. but after talking to the vat team they saw that it was still in a vein, and safe to use.

Let's let this fever know it is not welcome!

Nothing like a good nurse to come in and brighten Fayes day!
We LOVE that nurse Katie!



Friday, August 19, 2011

Everyone needs a Mitchell!!!

Last Sunday evening Faye asked if Mitchell could come visit, when Nick and I made the switch! Then it turned into Mitchell staying the night.....which then turned into him staying all week with Faye and I! And since school is starting on Monday, she was almost done with chemo, and her counts weren't quite zeroed out yet...we figured why not!


These two really are best friends! They love each other so much, and have the greatest time together!

But don't get me wrong.....Life is still normal.....they were fighting about what to watch, so they needed a talking to! Neither of them were happy about it as you can see!


Mitchell is always great, he is really good about making Faye laugh!


....and singing the ABC's while she does her mouthwash!


...and showing her the ropes....jump rope that is! They tried, but it just never quite worked with the glow sticks!


Morning juice and a cartoon! These two really are best friends!


Mitchell really hated his time here.....they have play stations in each room.....to play DVDs, and they also have games at the front desk you can get! When he saw they had a WALL-E game....he just had to have it.....and to say he was in Heaven....well what do you think?


What a lucky mom I am, it was nice to get this time for me also to be able to hang out with Mitchell! The only time I get Mitchell time, is on the weekends, and weekends go by so fast, so it was fun having him here!


Most nights though, Mitchell was asleep early, and Faye would stay up late! One morning Faye had a whistle thing, one of the nurses asked where she got it from, "I said from her party last night" Mitchell then looks at me and says "Faye had a party last night" and got a little teary...that he had missed it. I quickly explained to him she didn't really have a party, and it was just a figure of speech, then he was okay with it all.

But here is Faye out "partying!"






And crashing, Faye fell asleep on the couch.....her legs slowly fell off the couch, but she was still asleep! And of course nothing wakes Mitchell up!


Mitchell was nice enough to play house with Faye! This is her, she had a baby in her belly, she was resting, "cuz that's what moms with babies in their belies do!"



Them playing house was the cutest thing ever! I didn't get too many pictures, because if Faye knows you are taking a picture of her doing something she stops....or gets out of character!
They went fishing off of her bed, then they took the fish home and cooked it. While they were standing there cooking it, Faye put her arm around Mitchell laid her head on his shoulder and said "I love you sweetheart.". It was too cute! Then anything she would ask him it was "should we do this sweetheart, what do you want to do sweetheart, or that's a good idea sweetheart!"


Faye and her friend Rylee! she came to our room to visit for a bit, they tried on a few hats, and played with Fayes baby....neither of them could get enough of changing the babies diaper!


This is what Faye and I do a lot when it is just her and I, she wants me to hold her, and we watch a show! Mitchell was nice enough to snap a shot of it!



Good ol Chemo! It's not often...or ever in your life you get blue medicine put into you, Faye said we needed a picture of it!


Dr. Thompson needed a new home for this tiger, so he decided Fayes room would be the perfect place for "mike the tiger" to come visit! Of course in true Faye fashion, the tiger needed to be dressed up!





The kids also had a great time with this guy too! The played "Aladdin" and pretended this was the tiger, Faye was Jasmine, Mitchell was Aladdin, and her bike was their magic carpet!
Also I caught Faye a few times dancing with the tiger! I have a few short videos of it, but of course when she saw I was videoing she would stop! but she would sing the Sleeping Beauty song, and hold his hand an twirl herself around.
Our time with Mitchell was well worth it! But last night he had to go home, and Faye was not so happy about it, she always gets super upset when he has to leave. Last night was especially sad! Cuz usually on Thursday nights is when Nick and I trade. But Wednesday night Matt (who has been staying at our house helping take care of the boys, and visiting Julia and Covey who have been here a few weeks already, while he is on break from school) anyways he was feeling sick. And Thursday he felt even worse, he left to fly home Thursday morning...poor guy! Anyways just to be safe we decided Nick would come pick up Mitchell, and I would stay here through the weekend...instead of trading, so Faye was sad, she loves her time hanging out with Nick! We probably are being ridiculously cautious, but we didn't want Nick to carry something here and give it to Faye, and we didn't want me to go home, pick up something, and not be able to be here next week with Faye! So we figured it was our best option!
So this craziness that these two do is not happening this weekend!


I am bummed I can't go to Mitchells meet the teacher night tonight!
And when I get to see this guy again...it will have been almost two weeks!



But we knew stuff like this was going to happen, and we would rather be safe than sorry!
Faye already was developing a little runny nose and a cough...and we don't need it to get worse! No fevers....so we will see, but this just morning...we got put on this....



"contact precautions" Faye is not able to leave the room, and anyone that comes in has to wear a gown, gloves, mask, and throw all that stuff away in the room before they leave!
Faye is feeling fine, she is still running around, playing, and a bit upset she can't go on "walks" so we will stick with it, and hope this runny nose and cough doesn't get any worse!

Luckily this morning before she was put in contact precautions, Melissa (the mother I talked about in the previous post) and her other daughter Cecelia, stopped by and did crafts with Faye!


Sorry about the lack of posts, and now this marathon post! If you knew what kind of blogger I am ( our family blog is always only marathon posts) you would understand!
Lastly here are some funny things about Faye lately! She gets a big kick out of when I ask her something she says "okay your majesty"....in a really drawn out sarcastic tone! Makes me laugh every time!
And then just last night she got these pumpkin stickers out and decided we needed to play a match game with them.



I can't tell you how many times we would flip them over trying to find the match! But here they are matched up....as Faye decided! If you can figure out how they match good for you!
Fayes counts just came down, so now we get to just hangout, and wait for them to make their way up! Hopefully contact precaution is exciting as it gets around here!

Thursday, August 11, 2011

Reality......

Yesterday We hit a bit of reality! When this first all started and in our first few days at the hospital, I was introduced to a mom who had finished treatments with her little boy just a few months prior. Her son also was diagnosed with AML, we were sort of in the same situation, except she was pregnant, and had a baby all while dealing with cancer. She just happened to be on the floor, and some of the nurses asked her to stop by and talk to me. We just chatted for a minute, she gave me her information. She gave us a few pointers, like getting our own mini fridge to keep in our room (that has been a lifesaver). She was so wonderful, and had only good things to say about the nurses, and her experience with cancer. Well, come to find out yesterday morning, they were back after 9 months cancer free, his cancer was back, and they were back on the floor. Talk about a flood of emotions.
As if one dose of reality wasn't enough, there is another mother (I hope you dont mind me sharing) here that volunteers. I had heard from someone else that her daughter had AML a few years back. The mom was the bone marrow match, and they had gone to a BMT ( bone marrow transplant). Her daughter was 16, and ultimately because of such strong and severe cancer cells, she did not make it. I had a minute yesterday to talk to her about her experience, she mentioned it's not something she likes to bring up, because she doesn't have that wonderful ending, but it is not something she minds talking about and sharing. I am grateful to her, and to see how wonderful she is and how much her life has been changed by what she went through.
The reality is that just because you may finish treatments, your fight is not over. Just like another mother (www.littleairbear.blogspot.com) who has been finished with treatments for 7 1/2 months says she would be lying if she didn't dread the visits to the clinic to check to make sure her little girl is still in the clear.
It's true, the fear is always there. But what it all comes down to is those feelings you have, the feelings that I was blessed with when this all started. I always come back to the knowledge that everything is going to be okay. Sure your mind can wander, and you can second guess your decisions. But after talking with Nick about all of these wonderful mothers I have met along this path. The reality is....it's going to be okay!

At church on Sunday There was the most beautiful song sung in Relief Society, I truly needed this reminder.

Come Unto Him
by Sam Cardon and Steve Jones
He came to us. He loved us that much. There isn't a soul he's unwilling to touch. No life so dark, he cannot light. No sadness, no sorrow, he cannot right.
Come unto Him.
He came to earth. He lived as a man. There's no earthly care, he can't understand. No earthly pain he did not feel. No hunger, no heartache, he cannot heal.
Come unto Him.
Come learn of Him. He's meek and humble, and lowly of heart. Come unto Him.
He lived like us, acquainted with grief. To those who believe, he offers relief. He opens eyes. He forgives sin for the humble--the faithful, who follow Him. Come unto Him."

Monday, August 8, 2011

Faye's THIRD stay at HOME













Faye was able to come home 11 days ago and is headed back to the hospital tomorrow morning. Her stay at home was extended 5 days due to low counts. She had lots of time for playing with Mommy, Daddy, Mitchell, Nixon, her cousin Covey, Aunt Julia and Uncle Matt. Her habits from the hospital played a big part in how she plays at home. She asks multiple times a day to go on a walk. She gets out her stethascope and asks if she can "listen to you". She even plays "hospital"! But in her fantasy hospital, she's just had a baby where she then takes a "shower", walks very slow and "goes to sleep" with her new baby, then the nurse tells her she can go home. It's pretty funny!


She had 2 clinic visits while at home, just to get her blood taken and counts checked. At the second visit she told Stacey she could do the poke all by herself! She sat in the chair by herself and put out her arm and let them tie on the tight blue thing. When she saw the needle she lost her nerve and needed her mom's help. But that's a big step! She's getting so brave and we all know she's one tough cookie who's ready to handle Round 4!




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