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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Thursday, May 26, 2011

A Big Decision to Make

Nick and Stacey met with the Bone Marrow Transplant specialist this morning. This is what they learned:
Is it possible to take marrow from Nixon?
Nixon needs to be at least half the weight of Faye in order to take enough marrow from him. Faye weighs 30 lbs. and right now Nixon weighs 12 lbs. The window of opportunity for the BMT is right after her 3rd round of chemo which will be somewhere towards the end of July. So, the decision whether or not to do it depends on how much Nixon will weigh at the time. Can he gain 3 lbs in about 6 weeks?
What are the benefits of having the BMT?
The biggest benefit is that it gives Faye a better chance of not relapsing and more time in between if she does relapse. They just learned that relapse is especially bad news because it is much harder to get rid of the second time. New genetics can keep the chemo from working as effectively. Another possible benefit is the chance that the new bone marrow can help attack any cancer cells it contacts.
What are the risks to Nixon?
There aren't any risks to Nixon other than the risks involved with going under anesthesia. The bone marrow will be pulled from his hip bones just like during Faye's bone marrow biopsies. He will be sore for a few days but that should be it.
What are the risks to Faye?
Of course, the worst risk is death. But the mortality rate for BMTs when the donor is a sibling is less than 5%. So, the odds are good. But, she would have to get much harsher chemo before the transplant that would kill off all of her original bone marrow. So, that would be a scary time. Her entire immune system would have to be rebuilt (all the shots she got as a baby, etc).
How will this change her time in the hospital?
After the BMT, she'll have to stay in the hospital for 5 weeks. Then, she needs to stay close by for the next 100 days. That puts her probably sometime in December before she could go home.

So, it's some new information to digest and pray about. Although they can't make the decision official until they see how much Nixon weighs. In my own opinion, I believe that baby will be the right size. It makes sense why after two small babies they would have one so much bigger and gaining so quickly.

Something else I've been noticing is how much Faye has had to grow up since being diagnosed. When her Grandma Lori was there to visit she said how Faye seemed like an old soul. She was very matter-of-fact about her situation. When looking out her window at the park she said "When I get better I can swing real high." She's adapted to her new (temporary!) life and learns to submit to each new hardship. (She stopped fighting her eye drops and even started to say she liked them! "They tickle my eyes.") I even think she looks so much older now without her hair. Sometimes it's hard to remember she's only 3! But, it's comforting to know she is the same Faye who loves to give everyone a fashion show. Stacey says she is the fashionista around the hospital and everyone loves to see what she's wearing, which she picks out herself. Here's a picture of her doing this same thing before she got sick.

Wednesday, May 25, 2011

Theres No Place Like Home

I just wanted to share with you all of few pictures, and thoughts from Fayes first trip home since all of this started.

Small disclaimer: I am not the best writer, nor am I the best at organizing my thoughts, and usually my posts just turn into ramblings, but at least you knew beforehand.

I never knew just being able to be a family all under one roof would make me feel so happy. I was excited to not only prepare a meal for my family, be able to sit down at the same table, have everyone tell me how delicious it was, and better yet.....everyone ate it! I didn't mind so much when Faye took something of Mitchells and he would chase her around the couch yelling "give that back, it is mine Faye" and Faye laughing that she had again been able to tease Mitchell. I had a smile on my face the whole time I was able to clean floors, and bathrooms, knowing Faye was in the other room, introducing Nixon to all of his baby toys. I know probably some of you are thinking, on a trip home away from the hospital you were cleaning bathrooms instead of hanging out with your kids? But if we had a "normal" life, and on a "normal" day that is what I would have been doing.

So although Nick and I debated about taking Faye home. We had told the doctors numerous times that we didn't want to go home, that we just wanted to stay at the hospital. We were nervous about something going wrong being so far away, we were nervous if we would be able to handle flushing her line? (which now we realize isn't such a big deal) Because the idea of taking everything home from her room, just to come back in two days and bring it all back, seemed like a huge undertaking, and we wouldn't really even get a lot of time to hang out. But when the doctors said we could take her home for about a week, that was just an opportunity we could not pass up. Everything went smoothly, we were able to organize her stuff a little bit better. And within the first few minutes home Nick and I realized we needed this much more than we could have ever imagined.


Just taking care of her babies.


Getting in some Mario Kart time with Mitchell. Mitchell sets it up so they play as a team, so all Faye has to do in the game is throw the turtle shells and such. But she doesn't know that, she still thinks she has to steer too. And besides who cares, as long as she is the princess she is good to go.


Someone came and planted these flowers in our front yard when I was gone. I was so happy about it, it was the first thing I noticed when I got home. Faye loved watering them.



Her favorite things to do at home: catch bubbles, and go on walks.


She had sure been missing out on getting to take a "big" bath. We wrapped her arm in Saran wrap, to make sure her line didn't get wet. But Still she had to keep her arm out of the water.


One of Faye's most favorite foods is corn on the cob. When she was little and we would be shucking it, she would just pick a cob up and start eating it raw.


When I was getting Nixons PJs on I was showing Faye that he had a hat that matched his PJs. When she realized this, she was quick to grab her "night night" hat too. Of course Mitchell couldn't miss out. And Nixon was super happy about the whole event.


When we were able to go home the doctors said we couldn't take her anywhere inside, because of the risk of getting her sick. But they did say outside was okay. So she got to go to her first, and last one of Mitchells
t-ball games. I think that was a good thing that she hasn't been able to go to more because halfway through she wanted to go home.


Doing some projects with Mitchell, a little play dough, and some paint!


And of course to end the trip some rides on Dad!


Just what we needed to get us energized for round two!

~Stacey (Fayes Mom)

Sunday, May 22, 2011

Chemo: Round 2

**UPDATED** a few pictures have been added from her first day back.

Faye was readmitted to the hospital on Thursday. She and Stacey got to the hospital early in the morning for labs, an echocardiogram, and an EKG but had to wait in the waiting room until 5pm to get her new room. They started chemo at 11pm.

Just passing the time, relaxing in Nixon's car seat!

Waiting for her echocardiogram, she was getting tired and onory at this point, and fell asleep shortly after this picture was taken, which was good so she would hold still for the echo.

Stacey was told that one of the chemo medicines (Daunorubicin) Faye has been receiving is now unattainable (for whatever reason). Which is a little disheartening since we know the old medicine was working and she didn't have any bad reactions to it. Hopefully this new one will be just as good. So instead of having Cytarabine, Daunorubicin, and Etopocide she will be getting High Dose Cytarabine and Mitoxantrone. (Today was her first day with the new Mitoxantrone.)

Faye is doing alright being back at the hospital. She is much less peppy than she was at home. Chemo is likely draining a bunch of her energy. She has some random freak-outs during the day but aside from those she seems to have accepted hospital life again. It doesn't help that she can't get a full night's sleep because of all the potty breaks. All the fluids being pumped in her resulted in 10 trips to the bathroom Friday night to Saturday morning. Another new yucky thing about this round is the eye drops. She had to have them a couple times in the last round but this time, because the High Dose AraC really dries your eyes out, she has to have them every 6 hours everyday until 24 hrs after her last dose. They have to pin down her head, arms and body to do it. Definitely Not Fun.


Getting the EKG done. You can see how happy she was about it. It got even better when they went to take all those blue stickers off that were quite sticky. Luckily, they have these wipes that help get them off a little easier.

Just a random freak out!

Saturday night was a little scary because of a fever (102°). She got Tylenol, antibiotics and a lot of people coming in to check on her. Right when she was about to fall asleep, she rubbed her arm and her PICC line dressing came off. The nurses came in and changed it, which she hated as usual. Afterward, she cried about how itchy it is and how much it hurt for about an hour until she finally calmed down and fell asleep. Poor girl! That seems like torture to have something so itchy and bothersome and not be able to scratch it or rub it to make it feel better. Thankfully though the fever has gone down today and they suspect it was just a side effect of the new chemo. But they need to keep a close eye on her.


Saying goodbye to Nixon while getting a quick line flush done.

Nick and Stacey are supposed to have a conference with the bone marrow specialist this week to talk about Faye and Nixon. So, we should have some more information on that soon!

And here's a little glimpse at how Faye's warming up to her doctors!

video

Wednesday, May 18, 2011

Team Faye

Nick checking in. I wanted to do a quick post to personally thank everyone for their help, support, and most of all prayers. All have played a crucial part in many miracles for our family. We can't describe the relief we felt when we got the results of the bone marrow biopsy on Monday. The chemo is working. While there is a long journey ahead with so much uncertainty, right now we feel grateful and blessed to have so many wonderful family members, friends, and people we have never met lifting us up with their kind words, faith, and prayers. I hope you will keep sending them our way to keep Faye on her path to recovery. Thank you, thank you, thank you!

Here are a few pictures of Team Faye in action showing her our support during Faye's well deserved and well received time at home.

I asked Faye if she wanted to cut my hair so I could be bald like her. She quickly jumped at the offer. Mitchell, never wanting to miss an opportunity to participate, also humored her.

We let mommy help by finishing up what Faye started with the hair cuts. One of these things is not like the others!

Monday, May 16, 2011

Results are In

The chemo is working!! What a relief!

Faye's counts are steadily increasing, so they are planning on readmitting to the hospital on Thursday.

Saturday, May 14, 2011

Faye's Grand Night Out

FAYE IS HOME! If I had any idea our video had this kind of power we would've made a 'Don't Get Sick' video a long time ago! (see previous post to see how this came about.)

Before they knew they would all get to be together at home, Nick and Stacey decided they should take the opportunity of Faye feeling good and not being on any chemo to be together at home. So, Grandma Lori got to stay over for one night at the hospital with Faye! They had a great time.
The hospital has a radio station called Radio Lollipop (that the kids can listen to on TV, go figure!). They brought around this craft for the kids. Then they voted on winners and Faye won a Princess Puzzle award!


The irony of what Faye has to see out her window every day. (You can also see the curved lane out of the parking garage I mention later.)
The next day, waiting for her procedure... So hungry and thirsty!

I'm good to go!

Anytime, now. Let's get this show on the road!

Her Going Home Outfit!

While they were still at the hospital, getting ready to go home, one of Faye's attending doctors introduced Nick to Stuart Holden who plays on the English Premier League... It's only the best soccer league in the world, no big deal. The doc told him how Stuart thinks he's a big ladies man with all the charm. Nick said he had a lady that was a tough egg to crack. So he went back to their room to meet Faye. He was super charismatic and did indeed have all the charm. Apparently our mom and Stacey were swooning! And he had Mitchell from "Are you playing Angry Birds? I have 3 stars on every level!" And Faye? She wouldn't say a word but did look up at him and watch him a little. I love picturing him asking her a direct question and she's just silent! Too funny.


Once they left the 9th floor, the real fun began! Faye was so excited just to see different parts of the hospital. They have to go over a bridge walkway that connects to a different part of the hospital. She was all "Ooooh!"s. And in the car coming out of the parking garage, more "Oooooh!"s bending around the curved lane. And dont forget the first time she saw HEB (a favorite grocery store  in Texas) driving down the freeway!

Bye hospital room!


Riding to the car

Home, here I come!

She fell asleep on the way home, but not before requesting Papa Johns for dinner. And when they got home, it was a party! They stayed up until 11 o'clock playing and enjoying each other's company. Her and Mitchell were so cute together. Mitchell wanted to show her all of his new school things since she's been gone. And they were just so sweet to each other and wanted to play. It was also sweet for Nick and Stacey to see when Nixon was fussy and Faye said, "Just a minute, Mitchell. Just a minute." And she went to Nixon and put his binky back in and said "It's ok buddy." Something that would've happened a hundred times in the last 5 weeks but they're all missing out on.  And without even being asked to, or even expected to Faye has already helped Dad empty the dishwasher, and put away folded clothes of hers.

We all hope Faye and the whole family have a wonderful time at home! And that they will receive enough joy and rest to last them in their next leg of the journey. They will have to stay in most of the time and avoid crowds. They have to flush her lines once a day.  But hopefully all goes well and we'll be praying no mishaps happen at home, that her ANC counts get up to where they need to be and the results from the biopsy are positive!

Friday, May 13, 2011

An Unexpected Respite!

At the time of Faye's diagnosis, the doctors said that going home between chemo rounds was unlikely. They must have been trying to not get their hopes up in case she wasn't able, because today they were told that her counts are good enough to leave for a short time if they chose to. Nick and Stacey's first reaction was 'No. It's not worth the risk.' But after great hesitation and a lot of thought and prayer, they decided to take this opportunity!

Her ANC counts are around 300 and they need to get up to 1000 before she can start Round 2. Although the doctor admits there is a risk taking her home, as there is with everything, her ANC counts when she first arrived at the hospital were only 30, so it seems she should have a better time fighting off sickness now then the last time she was home.


Faye will be so so happy to be home. Although at first it was hard for her to be excited. Since she was scheduled for her bone marrow biopsy today, she couldn't eat or drink and was therefore, grouchy. She also was upset that her "arm tubes" (PICC line) won't be coming out. She thought that when she got to go home, her "arm tubes" would be history! :( But, after she woke up from the biopsy and especially after Stacey and Mitchell showed up, she was REALLY excited!

During her bone marrow biopsy today, she also had a shot of chemo into her spinal fluid. She did ok during the procedure. She wasn't as upset after waking up from the anesthesia and she didn't throw up, like the other times she's had been under. It was kinda scary for Nick, however, because they told him they'd be back for him in no longer than 30 minutes and then 40 minutes goes by and then 50 and then an hour. But everything was fine. They are hoping to get the results from the biopsy
Monday when Faye has to go back to the hospital to get some labs done and possibly another platelet transfusion. But after that, she gets to go back home again and stay until either Thursday or Friday!

Hopefully Faye will be able to cope ok when it is time to go back. And hopefully she'll pick up where she left off on her more outgoing and friendly self. She has really taken a liking to Nurse Katie. She sometimes calls her "Aunt Katie" because she has an aunt Katie here in Utah. Well, the other day Faye was able to be unplugged from her IV tower again and she was speeding along the halls on her trike and whenever she rounded the corner where Nurse Katie was at, she'd yell "Hey Katie!!" really loud and Nurse Katie would reach her hand out and give her five as she passed. Needless to say, the other nurses were all very jealous as they try very hard to make friends with Faye.

video

Pictures of Faye's homecoming will be posted soon!

Thank you to everyone who came to the Boot Camp fundraiser tonight! It was awesome! Pictures of that coming soon as well.

Sunday, May 8, 2011

Christlike Love and Faye's Video

...Succor the weak, lift up the hands which hang down, and strengthen the feeble knees. -D&C 81:5

Nick and Stacey have been blown away by the charity shown to them from all of you. It has been truly amazing! Soon after the blog was created, Nick and I had a conversation about how we had thought people were so terrible and have turned this world into such an evil place. And then this happened and it's like we didn't know a thing about the world we live in. Friends and family have been wonderful! Many have gone above and beyond the call of duty.

Even more amazing have been the strangers from all over that have reached out and donated, sent gifts, prayed for, and offered encouragement to Faye and her whole family. So far, these strangers have spanned 18 states and 3 countries. The world is full of people with true charity in their hearts. They are an example to us all and we are truly thankful for them.

I should also mention that there are wonderful people who give of their time and resources to organizations that help. Every once in a while someone from one of these organizations will stop by to pay their parking tokens for the day or give Stacey a $25 gift card to WalMart. Although these things may only be a drop in the bucket financially, they do so much to make them feel loved.

Thank you to EVERYONE who has done something to lighten their burden and "lift up the hands which hang down." I pray that the Lord will bless you and that the next 5 months will see as much support as the first!

Please use this link to watch Faye's video:


Wednesday, May 4, 2011

Getting Presents, Losing Hair and Nixon News





















Not much has been happening as Round 1 winds down. Faye continues to get blood and platelet transfusions. She cries when they change the dressing on her picc line but is getting tougher and tougher each week. She's been receiving the presents that lots of you have sent which does so much to brighten her day. Thank you!

The other kids sometimes keep the bikes from the playroom in their rooms and Faye was very sad that the barbie bike she likes wasn't available. So Nick bought her her own barbie bike. Now they can keep it in her room and she can have it whenever she wants. When they finally break out of the hospital they plan to pass it on to another kid.

Faye loves to go on "walks" which consist of her riding her new trike and mom or dad chasing after her dragging the IV tower behind. Every time they go out on a walk Faye sports a new hat and attracts a lot of attention which she secretly loves.



Faye's nails painted "pink and purpur". (Which only lasted an hour since her favorite part is picking it off!)

Stacey started noticing hair coming out more than normal while combing Faye's hair on Thursday. By Friday Nick was calling her a little puppy because she was shedding like crazy. Hair covered her shirt and ours, the bed and couch, it was everywhere! We started to comb it to see how much would come out and Faye began pulling out clumps. I was a little freaked but she thought it was funny!


She gave herself quite the bald spot!


Faye made a friend at the hospital named Lucy.

The friendship formed from an exchange of gifts. Faye gave her 2 rings and Lucy gave Faye 2 "squinkies" (little toys that come in little plastic balls and go on bracelets or rings, which Lucy gave her also). Later, Lucy came into Faye's room and they played Pretty Pretty Princess together. It was fun for Stacey to see Faye hanging out with someone. But the next day Lucy went home. Another part of AML will be watching the other kids come and go while Faye stays on and on. I recently learned that out of all cancer kids coming and going out of 36 rooms, Faye is the only one with AML.

Sometimes very nice people come to visit Faye. One day, two guys came and sang her a song with guitar and harmonica. It was a blues song that Nick loved. Faye was extremely bashful as usual. Another day, Kameron Loe and Sean Green of the Milwaukee Brewers stopped in to wish Faye well. Again she was very bashful but Nick thought it was awesome and got this picture. (very blurry, sorry)


Faye continues warming up to the doctors and nurses. On Saturday, Nick went to get a pizza from the delivery guy in the lobby and while he was gone Faye talked to nurse Kelly. She told her about Mitchell and Nixon. When Nick got back Faye told him she talked to her and that they were friends now. The day before that Nick had to tell her that Dr. Frank will not be helping them anymore (she has 3 doctors) and Faye said, "Oh, no more Dr. Frank? I liked him." (Even though she would never talk to him.)

As of Tuesday, her head is mostly bald on the back and sides. Stacey asked Faye if it felt funny with no hair on the back of her head and she said yes. Then she asked her if it made her sad and she said no. So, that's really good. They were both sitting on the couch the other night and Stacey was looking down and Faye pulled out a clump of hair and started tickling Stacey's nose with it and laughed.

Faye loves Poptarts. They're one of the few things she'll eat.

New information from today: The bone marrow match results are in. Four-week-old Nixon is the only match. Originally, Nick and Stacey were told that they could not take bone marrow from a child under 1, but the doctors now are saying it has been done and that they'll need to speak with the bone marrow specialist to see what their options are and what risks are involved. They have at least a couple of months to figure it out.