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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Sunday, April 8, 2012

One Year Ago Today.....

 I have been writing this post so many times in my head!  I have changed what I wanted to say, tried to figure out what I wanted to share, and what I wanted to leave out!  And finally when it came down to it, it is something I feel needs to be shared!  I don't know if this is for Faye later on in life, or there is someone out there that needs to hear this!  Hopefully it all makes sense and serves a purpose, if not for anything else, but to finally get this all off my chest!

Last year when everything was going on I felt a whirlwind of emotions, so much going on, and Nick and I were trying to figure out how we were going to do this!  We had a brand new baby, and a little girl that we were convinced something more serious was wrong, although we kept getting the advice that she was fine and that it was just growing pains.  So here you go, as long as this may be, I need to share with you my side of the story.......Random Nick comments and additions in blue. 
Leading up to everything:
In December we were lucky enough to go back to Utah to visit Family!  Three days before Christmas Faye started complaining about her knees hurting.  At a Christmas party she had got hurt while playing with cousins and said she hurt her legs.  We just thought it was something to do with that.   Over the next few days she would not walk at all, constantly wanted her legs rubbed, and since it was two days before Christmas we decided to take her into the ER (which is where our insurance being out of state told us to take her). In the ER they ran x-rays and found that nothing was broken or anything.  The doctor told us it was probably a virus and sometimes when you get a virus it can concentrate at the joint.  He sent us home told us to give her some Advil, and if it didn't go away in a day or two to come back.  Well luckily enough she was able to walk again after the Advil, but something just was not the same.   She wouldn't run anymore, and a task as easy as climbing onto her bed seemed like a chore for her, she just did not have the same amount of power in her legs.  Christmas came and went everything was fine.  When we got back to Texas she kept getting sick. At the same time Nick had just gotten offered a job in College Station (where we already were)  and our options were: continue doing more schooling, or graduate and accept this job (although not in his field).  We prayed about it, and decided taking this job was the right thing to do for our family!  With a new job came new insurance.  The insurance was not going to kick in until April first for Mitchell and Faye!  So although Faye was getting a little sick it just seemed more like cold symptoms and we weren't too worried about it!  But as time went on she would complain more and more about her legs.  We were trying to wait it out until insurance kicked in.  (While in hindsight thinking about it now, I don't know why we didn't take her to the doctor sooner, but looking back now I think everything happened how it needed to).  Finally at one point she got this cough, and she wasn't able to cough because her legs hurt so bad.  She would just look like she was in so much pain, and we felt so bad for her!  We would spend night after night in her room, rubbing her knees all night long, and during the day constantly, it was the only way she seemed comforted!  I remember one night specifically rubbing her knees and singing to her every primary song I could think of, and church hymn I could remember!  If I would start to sing one I already sung, she would remind me we had already done that one, and I would have to rack my brain for a new one!  She would want carried everywhere we went!  Being 8 months pregnant I was not so excited to carry this little 3...almost 4 year old around!  I would joke about it, and tell people "I guess I deserve this, I didn't walk til I was 18 months old!  I took my first steps when my mom was in the hospital having my younger sister, so my mom had to lug me around her whole pregnancy!  And I was quite the little chunk when I was a baby!"  We would ask friends and family and they told us stories of other kids that had bad growing pains and that it would eventually pass.  I remember sometimes getting so irritated at Faye and not understanding why she wouldn't walk!  Finally one night she was so sick, she was burning up, she was sleeping next to me and Nick in our bed and I woke up to her talking some gibberish and pointing at the sky (I don't think I have ever been more scared in my life up to that point.  Me and my eight month pregnant self grabbed Faye, and hurried and got her in a cold shower.  She was screaming the whole time trying to get away from me but we just sat in the bottom of that shower.  I held her, would not let her go, and I cried!  It was that night, I knew something was terribly wrong. Nick and I looked at each other, and knew insurance or not we needed to get her to the doctor!  So the next day first thing in the morning we called the doctor, and took Faye in!  Nick and I that morning wracked our brains and wrote down all the information we knew up to that point, hoping we could help the doctor figure out what was wrong with our sweet girl!  Here is our list of everything we could think of:



Nick and I laugh now about some of our thoughts...If only it was she needed better shoes, or that she might need to wear some braces to straighten out her legs!  

We took her to the pediatrician, he told us "here is an antibiotic, lets get rid of that cough, and then we will see what we can figure out about her legs."  And he sent us on our way!  Once we had gotten rid of the cough...that weekend was Opening Ceremonies (for Mitchells T-Ball, they do it up big here in Texas).  After the ceremonies Nick went to find Mitchell, and Faye and I were slowly making our way to the car through the crowd!  I overheard two ladies talking.  One was talking about her son and said that he had just went to the doctor for some reason or the other and the doctor thought he might have leukemia because of the bruises up and down his legs!  I have to be honest my heart stopped for a second...Faye had bruises up and down her legs, but hadn't been running or jumping, or playing like normal little kids to be able to get those bruises!  I kept that little piece of information to myself.  I thought for sure there was no way, and tucked that information into the back of my mind! 
Here she is at opening ceremonies! 
I only attach this next picture, because it is the last time I was able to really do her hair!  And I was quite proud of how it turned out! 
Opening ceremonies was on a Saturday, and the next day the 3rd, I went into labor, that night we went into the hospital I labored all night, the pain wasn't too bad, but I wasn't progressing!  And Nixon just was not dropping.  So that following morning my doctor came in and decided since Nixon was measuring so much bigger than my other two babies and through the whole night nothing really had changed, he decided it would be best to have a C- Section!  I was scared, I wanted to try and have this baby on my own, but my doctor was concerned, and Nick and I talked for a second, and decided this would be what was best!  So before I knew it I was in the operating room, having a baby! 
While in the hospital in my room there was a whole other bed there, I don't know if it was for the dads, or what not.  But during the day, Mitchell would be at school, and Nick and Faye would come see me.  Faye would lay on that bed all day long, just laying there or sleeping!  She was so pale.  

We had decided before having Nixon that we were not happy with our current pediatrician, and that we needed to get a new one, for Nixon and Faye to go to.  So that Friday we took Nixon for his newborn checkup, and had Faye get checked out by our new Dr.  Dr Pierce!  

She was wonderful, she  listened to everything we had to say, and one of her first thoughts was that Faye might have a vitamin D deficiency!  So she sent us to go get blood taken and into get some x-rays to cover our bases!

Here is Faye one year ago today!  Nicks Dad was visiting to see Nixon, and it just so happened to also be his birthday! This was after the Dr visit!  This day was a pretty good day for Faye!  (Isn't that how it goes when you go to the Dr.? They have all these problems until you see the Dr, then they are fine!)  Nicks Dad had taken Faye to Chuck E Cheese while Mitchell was at school! You can't see in this picture, but she has pokes on both arms!  The person taking her blood, was not very good at all, I waited in the waiting room, but I could hear her screaming, Nick was back there with her, and when he came out, I remember him not being happy at all with how they treated his little girl!
The very next morning!  We got a call from the Hospital, telling us to get Faye tot he ER right away.  Based on her levels she shouldn't even be moving!  I was close to completely freaking out at this point.  No doctor calls you on a Saturday and tells you to go to the ER.  My assessment = no bueno.  Nick took Faye to the hospital and I waited at home with the boys for some news and to hear what was going to be happening next!  
Nick said they took her blood again to be sure what they were seeing was not a lab error.  A doctor came into Nick and said what Faye had they would not be able to treat her there and they would have to take her to another hospital. They gave him three options and wanted Nick to choose!  But they wouldn't tell him what was wrong with her or give him any advice as to which hospital would be best to treat what she had. I was pretty upset they wouldn't give any sort of indication as to which would be the best place to take her.  I know nothing about any of the hospitals or what she might have. The more I talked with them the more angry I got with him.  The doctor left and gave Nick a moment to think about it.  A nurse came in and said "I don't want to be the one to tell you this but Faye most likely has leukemia and you are going to want to be at Texas Children's.  I remember that moment very well because in the two minutes immediately after she said that I lost about 28 pounds in tears.  I was so scared and just sat there holding Faye bawling my eyes out.  All I could think of was to wonder how much more time we had with Faye and however much it was wouldn't be enough.  The nurse was so sweet as she sat there and put her arm around me and Faye.  She asked if it would be alright to pray for us.  I nodded yes and she offered a prayer.  When she finished she asked if there was a pastor or someone she could call for me.  My mind was all over the place and I uttered bishop Garlick's name. The bishop came quickly and watched me cry for what seemed like a few more hours.  He calmed me down and helped me give her a blessing.  Stacey didn't know anything yet because I was too scared to call and tell her.  I did not want to tell a mom who just had a baby less than a week ago that her little girl had cancer.  The bishop was great and had me practice calling Stacey just stating the facts and not getting ahead of ourselves.  Nick called me to tell me they were taking Faye down to Texas Children's (Nick seeing Faye go trough all of this, and having to hold her alone and receive all of this information...and her being his little girl!  He was kind of a mess, which who wouldn't be?), and that I should come to the hospital, bring Nick some stuff, and send them on their way in the ambulance (Mitchell is still upset he wasn't able to ride in the ambulance)!  I went down there, and when I walked in the room, Nick just looked at me and began crying.  the doctor walked in, and sat me down, looked into my eyes and said: "Most likely she has leukemia!"  I didn't really show much emotion!  I think it was because I had seen what my little girl had been through up to this point, and I was just ready to get her fixed!  Or I don't know if I had been prepared for this information!  The doctors were not telling us for sure that is what it was....they told us worse case scenario that is what it is....best case it is just some virus!   
 Here they are at opening ceremonies last weekend:
And today! 

I have so much more to share, and express to everyone, but I think for now this is enough!  What a year it has been!  Who knew this day would ever come?

16 comments:

Cute Carbines said...

Thank you for sharing. It's important to share because your strength can help someone else. I love all of you! (By the way, they all look adorable in their Easter outfits!)

The Nelsons said...

Even though I knew all this, it still gave me a good cry to read it. I'll never forget what you guys went through and how you handled it with so much strength and faith. I am so happy this day is here! A year later with Faye healthy! I pray every day that she stays that way.

And what a trooper Mitchell and Nixon were through all of that. It sure didn't hurt Nixon's looks at all to be passed around. Geez Louise! Look at that studly smile!! What a stinkin cutie pie!! I can't wait to see you guys!!

Eric and Jenny said...

A year.

I was just thinking about it the other day about how it was coming up on a year, that seems like just yesterday in ways but then in other ways it seems so long ago. I can't imagine how if must feel to you guys.

I also remember you telling me all of this but to see your little notes to take to the doctor makes me just cringe. You must have felt so helpless and lost not knowing what to do for Faye, it kind of breaks my heart all over again.

Those last two pictures make me cry at your three sweet babies all together with their blonde heads. Beautiful, I sure do love you all.

Oh and happy first birthday little Nixon!

Celeste and Jared said...

What a whirlwind year! Thank you for sharing. It is such good information to know to be able to help others. We miss you guys!! Love the pics with all three kiddos together!

Thiago & Teri said...

I have not been able to get all of this out of my mind lately. I knew it was coming on a year, how surreal. I am not going to lie, this trial of yours is something that scares me to death and the fact that someone I know and love has gone through it and came out on the other side....well, it still brings me to tears. Your thoughts make me cry and make me see life through totally different eyes. I love you so much and remain in complete awe of you and your ability to to rise above. So grateful that it all turned out the way it did. The last picture of your babies all together seriously gives me chills. The love between them is just so touching. Love you guys, still think about you often and continue to pray every single day. Hey and happy birthday to the little one, can't believe he is one!

Kennedy said...

I have been following your blog for a while now. I know Misty Meldrum. This post was very special and im sure Faye will love to have these posts to look back on and read about. I have 2 children and i understand what it's like to feel completely helpless when they are sick. I know Faye has gone through so much in a short period of her life. What an amazing example she has been and she really knows how to persevere. My daughter is 22months and has been sick since Jan. she has been in the hospital 4 times and we just found out that she has Asthma. I know this is nothing to compare to Faye's challenge but it has been so difficult and heartbreaking to watch her struggle to breath over and over and spending so much time stuck in a hospital room. I know Faye has had her share of that and im sure it has been difficult. I really enjoy reading your post and watching Faye's progress and fight this disease. I feel that God gave us children to help strengthen our faith in him and his miracles. We have seen many miracles with our children, my son was 6 weeks old he got Meningitis and since then we have had one illness after another. I pray and hope Faye will continue to fight this and you and your family will be blessed through these trials. Erin Kennedy

Dan & Staci said...

Wow thanks for sharing. I can't believe it has been one year. That is crazy. Faye looks so beautiful with her cute short hair! What an amazing journey you and Nick have been on and I know your story will help many people out there going through the same struggles. You two are amazing.

Grandma Mary Ann said...

Wow! I have just had a good cry. I think that you have been one amazing family. It was a blessing for me to see first hand the wonderful people who helped in amazing ways. Asking how Faye was, bringing food, or donating time and money. I just feel so grateful. Love you!

Kristi Rowley said...

Thank you for sharing. I have been touched by your words and spirit. What an amazing example of strength and faith you are to so many.

Ryan and Hetz said...

Wow! I can't even imagine being in your shoes...(I was just crying in my office and someone asked if I was okay haha as I sat here reading this). You are so amazing. I love your little family and bet it is so nice to be together again.

Sharp Family said...

Oh that sweet sweet Faye!!! I pray for continued health and strength!! She sure does deserve it!! So glad to see you are all doing so well!!! She's cute as a button!

Lark (SparkyLarky)@ Lark's Country Heart said...

I absolutely LOVED reading this!
Thank you for sharing this private memory and thoughts!

Wildthreeplus2 said...

LOVED every bit of this entry! It really hit me, as a mother of 3 kids I am very aware of my mother's instinct. However, sometimes I don't follow through. What a blessing to have all 3 of your gorgeous children again, together at opening ceremonies! The Lord's tender mercies are amazing!! Lots of love and answered prayers from UT! Melyssa and family!

Isabel said...

I loved reading, it is a good reminder for me to not take anything for granted! What a test of strength... You guys are a stronger and amazing family. We will keep praying for health and know that you are such a great example to so many!

Jen&Trev said...

You are a friend of a friend and I remember reading something about your story in a Facebook post months ago. I am so glad to hear that Faye has been blessed to be healthy again. My thoughts and prayers have been with your family ever since I heard about Faye. Isn't it great, the miracles we get to witness here on this earth? We found out that our daughter had a heart condition when she was a year old. Her condition caused her to have severe breathing issues, and since her aorta was wrapped around her airways and esophagus she would choke a lot. I truely feel like the Lord guided us and helped us through. Our daughter had surgery last year, and is a mostly healthy little 2 year old. Love and hugs to your family, and especially to Faye. Experiences like this make us all stronger. It gives us hope, and helps us think about more than just ourselves or our lives. Thanks for sharing!!

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