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.
On Monday Faye went to clinic for another check up. We are happy to report all is well and she continues to stay healthy and in remission. Every month down is a sigh of relief and every few days before a clinic appointment comes with some anxiety. Another big thanks to everyone for keeping her in your prayers.
Back in July Faye's doctors and social worker referred her to the local Make A Wish organization. I am sure most of you have heard that the Make a Wish organization is a non profit that grants wishes to children with life-threatening medical conditions. It is a wonderful organization that provides some joy strength and hope to these poor kiddos that have to go through such terrible things.
Three weeks ago we received a phone call from two local volunteers saying they wanted to come by and meet with Faye. Rebecca and Debbie were very wonderful ladies that spent an hour or two visiting with our family and getting a feel for what Faye enjoys and her personality. Faye was being a bit bashful but eventually started to open up and play with her barbie they brought her. This evolved into her bringing out her princess dolls and showing them off like a proud mother. When doctors talked to her in the hospital about make a wish she told them she wanted to be in a parade with Sleeping Beauty. They told her that should be her wish. She would see the Disney commercials and ask us if you could really see the princesses in real life at that place. So when Debbie and Rebecca asked Faye what she would like to do, where she would like to go, who she would like to meet, or something she would like to have she said she wanted to see princesses.
About a week ago we received word that her wish was approved and that they would be sending her to Disney World on December 7th. A day or two later we were told that a sorority from Texas A&M (Chi Omega) would like to sponsor Faye's wish and have her be their guest of honor at their annual Song Fest fundraiser. This fundraiser is an annual event done to raise money for Make a Wish and a local girls ranch.
The sorority contacted Stacey on Sunday to ask if our family could join them at their planning meeting for the fundraiser. We showed up to the "Chi-O" House and met Lauren, who is heading up the fundraiser, and a few of the other girls involved. They were very sweet to the kids and gave Faye a tiara, princess book with stickers, and a Texas A&M Chi-O shirt. We waited outside a room we were told had around 200 girls in there waiting to hear about Faye. Lauren went in and made the announcement that they were lucky enough to have found a little girl to sponsor for their fundraiser this year. We walked in the room to the applause and screams of 200 girls. Mitchell and Nixon thought that was pretty great but Faye had her head buried in her daddy's shoulder as much as possible.
Stacey told them Faye's story and we expressed our gratitude for these wonderful ladies and how impressed we are that they take time to give service. We were especially impressed with what they call their Symphony that reads: "To live constantly above snobbery of word or deed; to place scholarship before social obligations and character before appearances; to be in the best sense, democratic rather than "exclusive" and lovable rather than "popular"; to work earnestly, to speak kindly, to act sincerely, to choose thoughtfully, that course which occasion and conscience demand; to be womanly always; to be discouraged never; in a word, to be loyal under any and all circumstances to my Fraternity and her highest teachings, and to have her welfare ever at heart, that she may be a symphony of high purpose and helpfulness in which there is no discordant note".
In our opinion, it is a very impressive guide for these college women to follow and they all seem to be doing it well. They are absolutely wonderful and we are truly grateful to them for taking such an interest in Faye and their efforts to give her something special. While I am still nervous about being a dad to a little girl, seeing things like this calms my nerves about her growing up.
So in summary, we will be joining Faye to meet some princesses and to be a guest of honor at the Chi Omega Song Fest very soon.
A Few of the Girls!
Modeling her New Crown...and a new nightgown!
I am sure you will guess by the rambling...but just in case (this is Stacey now)
This whole Make a wish event has brought about so many emotions for me! The whole time that we were in the hospital the idea of just being able to go on a vacation together sounded like a dream come true. And to be honest some days it is what kept me going. I know that may seem like a silly thing, but after being split up for so long and trying to balance everything, the idea of getting away from it all together sounded like heaven on earth. Once we finished treatments with Faye I was just happy to be able to be at home. I was happy she did so well with the treatment and I really couldn't have been happier to be home with the outcome that we were given. I felt lucky enough to be at home with a now healthy little girl and felt that we didn't need a trip, that we didn't deserve a trip. I felt like there were so many other kids/ families going through worse things than us and I was just grateful to be home! I felt like that was reward enough. So when we were contacted by Make a Wish I didn't feel we deserved it, I had a hard time being excited about it!
The day we got the call saying they had booked our flights and we were leaving on the 7th I cried. I cried because I had so many mixed emotions. I was so happy for not only Faye, but for Mitchell...he deserves this just as much as Faye, he was amazing through everything, they were so excited about their trip, and couldn't stop talking about it. I cried also because I think it finally hit me that what Faye had been through was a life threatening disease. I know its one of the blessings I was given to remain calm through everything that I knew it would be okay (I know I say that a lot on this blog) I cried because of what this trip meant...some kids don't ever make it to their wish, some kids go on their wish knowing they don't have much time, and some go because of the odds they have overcome! I finally have come to terms in my mind that this is something Faye deserves...She was/is a fighter! She had a great attitude through everything, and she let Cancer know it was not welcome, and it was not going to win! So for that I am excited! I might cry during the whole trip....just having to tell the Chi O girls about Faye I couldn't help but get choked up...telling Fayes story on this blog is easier. It's easier to hide behind a computer screen and be tough! Its when you look straight into someones eyes and you get that look of them being genuinely concerned for you and what you have been through! So we are going to take it as it is, continue to hope and pray that Faye stays healthy and be grateful that she is one of the lucky ones that gets to make her wishes come true!
We were lucky enough to have Grandma, Grandpa, and Uncle Troy come visit! Thats right an actual visit, no planned extended baby sitting, no switching!
So we just had some plain old fun.
We took a visit down to the Houston Zoo.....
When Faye was in the hospital she got a stuffed Flamingo she called it a "Duck Bird"
She loved the Carousel ride.
And crawling through this tube with fish swimming around you...they did it over and over again.
And of course on the way home so tired! Lucky Uncle Troy who just returned home from his mission in the Philippines in September, which is why they came to visit got the lucky job of pillow.
Here is Faye on the 9th...two months being home from the hospital! Look at that hair!
It was only a day or two after this picture that Faye was standing in the shower, and when she went to wash her hair got this giant smile on her face, and squealed with excitement that she could feel her hair now. Even after she got out of the shower she probably spent 10 minutes in front of the mirror with a spray bottle and a comb making it look just right.
And of course we have been dressing up!
One night Nick promised Mitchell they would go see a movie, so Faye, Nixon and I got to hang out. I needed to run to the grocery store (you know the Saturday Night run). She had just taken a bath, I told her to go get some clothes on. She came out wearing this and asked if she could take her wand..."why not right!" Who wouldn't see this little girl at the grocery store and get a smile on their face?
***Also in case you were wondering: Do you know how a wand works? According to Faye they use "picky dust" and then they change your clothes to a wedding dress or a fancy dress.
Its crazy to me that it is November already! When everything started with Faye we thought, we would be lucky to be able to be home by mid November. And since the decision had been made to only do four rounds of chemo we have now been home for two months. Can you believe it? Neither can we. There are moments over the past 7 months that I dont know if I will ever forget. But for everything that happened to us I honestly could not be more grateful for the many blessings I felt and witnessed! And for that I am truly Thakful. It was my plan to have Faye share things she was grateful for over this month, just to see in the eyes of a child what she is grateful for! So far it has yet to happen, but I hope to get a few pictures on here over the month of things Faye is grateful for! But for now I will leave you with the news that Faye is doing wonderful! Last Monday we went to her checkup and her counts looked great:
(In the parentheses is what is considered normal)
White Blood Cells: 5.67 (5.0 - 14.5)
Hemoglobin: 13 (11.5-14.5)
Platelets: 188 (150-450)
ANC: 2710 (1500-8000)
Yeah everything is in the normal range, haven't had that yet!
Also last Sunday Faye was able to participate in the Primary Program (its a program put on by all of the kids ages 3-11 at church) they are able to share what they have learned throughout the year, in words and song! Some might disagree, but by far one of my most favorite Sundays of the year. This year was Faye's first year to be able to participate, (another thing I was afraid she would miss) She was cute doing her part, she has been so excited. Ever since we started practicing her part she has asked on Sunday if it was her turn to go up yet. And even the following Sunday after the program she asked if she got to go up again. Her part was "Heavenly Father has a plan for me" When her part was handed out and I saw what they asked her to say, I couldn't help but get a little emotional. This is a reassurance I have had from the very beginning. I have always known Heavenly Father does have a plan for Faye, he is watching out for her, and he has sent her here for a purpose.
Some brother sister time, these three love each other so much!
The best big sister, she always wants to hold him!
And of course Halloween! (Wish Faye was smiling in this picture, but typical four year old....has a bit of an attitude at times to say the least!)
Flynn Rider, Rapunzel, and Pascal
Trick or treating was quite fun, dad had to hold her hair up sometimes, because going from none to a ton got quite heavy!
I just had to add this picture in! This was Halloween last year! This year if you went to Freebirds (a local burrito place) Halloween weekend and the kids wore their costumes the kids got a free burrito, Nick had the great idea that this is something we needed to do. I didnt want the kids to chance getting this years costumes messy before Halloween so we decided to pull out last years and see if they would still fit. They sure did! But I had to keep smiling, because Sally Brown just doesnt have the same effect without any hair!
(Just picture it, I didnt get a picture of them wearing the same costumes this year)
Helping Dad mow the lawn...yep this was just yesterday! Nothing like Texas and still having to mow the lawn in November!
Life is good! I just told Nick last week that I was finally feeling a little more at peace, and feeling like we were getting into a normal groove...it still has its challenges, but like I said we couldn't be more Thankful for all the many blessings we have!