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.


Wednesday, October 12, 2011

This is what Faye has been waiting for!

 She has been praying for weeks that she could get to go to church!  Finally on Sunday her wish came true!  Everyday for the past two weeks she has been asking me if it was church day.  The week before this she could have attended church, but it was General Conference, but another week to let that immune system get good and healthy we will take it!  It must be doing something right, because Mitchell caught a cold, then passed it on to me,  and Faye has yet to get it!  So that is great! 
 She was so excited about her new dress, and showed everyone at church, or made sure if they came up to talk to her that they noticed her new dress! 
 Before church picture....not the greatest, but the best we could do with a self timer! 

Aren't these the cutest kids you have ever seen? 
Faye had such a good time at church, she loved every minute of it, and wasn't shy at all to go to her class, she walked right into primary and sat there!  What a wonderful day to be able to attend church all together. 

Monday was Columbus Day, Mitchell had school off.  We were in dire need of a trip tot he grocery I got a little ambitious and took all three kids to the grocery store by myself, this is the first time I have done that!  I had to keep reminding myself  "It wasn't too long ago that you dreamed of the day that you would get to take all three of your kids anywhere together, better than one being in the hospital"  now after doing it I am not so sure!  No really they were fine, but we had a talk right before we went in, and I said there will be no teasing each other, no climbing on the end of the cart, and you will stay right by would have thought I said please do all these things while we are at the store! 
Still better than being at the hospital!

Mitchell came home from school today with this story he wrote in class, his teacher had told me that he wrote a cute story about Faye...she was right!  He is such a sweet big brother!

Mitchell's teacher says he is very open with his class about Faye!  they ask why he draws pictures of her without any hair, and he explains it all to her.  His teacher asked if we minded that he was so open about what is going on.  Of course we don't mind we are glad he will talk about it.  I asked his teacher if it ever gets distracting to the class though, let us know!

Wednesday, October 5, 2011

Good Bye Old Friend......

Last week was exciting...a day that we have been waiting for forever!  Faye finally got her line taken out last is what we have been up to leading up, and since....

Cutter Cookies a definite must
                                           "Where is Faye?"
                             We got in some good card playing....
                                                Faye won!!!!!
  She may not have hair, but that doesn't stop her from doing other peoples!
 She is ecstatic that her ANC is high enough to go to the park, and swing on the swings!  It was her idea to get a picnic ready, and it had to be brought in this picnic basket!
                    "Higher, Higher!"  That is all she says while swinging.
 Last line flush.  You can see she is heartbroken about it!  Not really she just didn't want her picture taken.  But I like the first explanation better!

 Tuesday was the big day!  We got up at 4:30, left our house by 5:15, because we needed to be at clinic at 7:15.  Clinic days are long days to say the least!  We wait in the first waiting room!  They then take us back to an examination room where they draw labs, check her height, blood pressure and weight.  And then we wait there for labs to be done and counts to come back. 
 Where we then talk with the doctor.  Dr. Margolin came in and said Faye was ready to get her bone marrow biopsy.  The Dr. also said they weren't going to take out her line, because they wanted to see what the results of the biopsy were first, and then they would take out her line after the results got in. And she was awake...although he doctor said it doesn't hurt when the line comes out, we didn't want to wait and see!  Nick and I told her that if the cancer was back and they needed to use a PICC line again that her line was not in the right spot for Chemo, and they would want to place another line anyways.  That and deep down Nick and I didn't want to deal with a little girl who thought when she woke up after they put her to sleep that her line was going to be gone.

Blood Counts: (normal range)
White Blood Cells: 2.77  (5.0-14.5)
Hemoglobin: 11.6 (11.5-14.5)
Platelets: 170 (150-450)
ANC: 1730 (1500-8000)
(Three out of four in normal range...we will take it!)

So then after that we were sent down to PACU...where again we waited....and waited...and waited! 
 Finally they took her back at 2:00...mind you this whole time she hasn't ate a thing since the night before.  They decided to try something new and to help with the hunger of the little kids they would hook them up to an IV while they are waiting to get a procedure done.  It didn't help, Faye still started saying "Just poke me, I just want to get my pokes"  because she knows when they poke her and she wakes up she can eat whatever she wants!  The nurses in recovery know Faye...and that she likes Cheetos, Cheese Dip, and Milk!  Whenever they see her they say "Is that my cheese dip girl?"  most other kids in the recovery are not used to this stuff so they wake up groggy, crying, or not able to eat a lot at first!  Faye has been through it Six times now...she doesn't miss a beat when she wakes up! 
 Faye and Dr. Margolin.....Bone Marrow looked great! No Leukemia cells here! 

And we finally left clinic at being in clinic a total of 8 hours, and probably actually talked to doctors or did procedures for a total of 2 1/2...yep makes for a long day!

On the way home Faye decided Target was the place she wanted to go to get her Swimsuit, (I hadn't bought her one this summer, figuring she would never get to wear one)!  So we first stopped at JC Penney where we found a cute new dress for her for Church!  But no swim suits, so we then went to Target (Faye was right) where she found one!  It was so fun shopping with her, Nick and I loved it, she was pointing out all the pretty dresses or cute clothes!  She had so much fun shopping.

She was also funny because the whole way home she kept asking Nick "Can I drive?"

We had to keep a bandage on her arm for 24 hours, and then after that she was free to do whatever she wanted!  Take a bath, swim, whatever!
So Faye decided to do both at the same time! 
 It was funny to watch her because she got in the bath, holding her arm out of the water, because that is how she has had to take a bath for the past 5 1/2 months,  then I saw her look at her arm, realize she didn't need to keep it out of the water, and quickly put it in!  She also has recently decided she loves to take showers!
Nick's Dad left Friday morning...yep for the first time since this all started we are visitor free!  So that night we decided to take a break!  I told Nick if we stayed home I would just want to finally get my house back in order, so when I said that he decided he needed to get us away from our house, all together.  We thought why not go down to Houston, stay in a hotel and take the kids to the Zoo on Saturday?  So we went swimming at the hotel pool that night, the kids had so much fun they decided to get up and go swimming in the morning again instead of the Zoo...better for us Nick and I thought. I didn't take many pictures, we just enjoyed ourselves, but I did get this cute on of the kids first thing in the morning!
Everything is going well so far, we are enjoying getting back to "Normal"  Mitchell got a bit of a cold this last weekend, and has passed it on to me, but luckily Faye hasn't caught it yet....her immune system must be doing better than we think!

Just a few stories I wanted to share about Faye:
One night I was laying on the family room floor playing with Nixon, where I can hear Nick, Faye and Mitchell in Fayes room.  Faye is the Mom, Mitchell is the Dad, and Nick is the doctor, Faye is about to have a baby and the rest goes like this!
"So you think you are ready to have a baby?" Nick says
"Yep" faye replies
"How long have you two been married?" Nick asks
"15 days" Faye replies
"I dont think I approve of this." Nick answers
"Okay are you ready for this baby to come?" Nick says "here she comes"
"Dad it doenst go like that" Faye says "You are sposed to cut the baby out."
"Oh, I didnt know, Faye did you know not all babies get cut out?" Nick says "What is your babies name?" asks Nick
"Sleeping Beauty" replies Faye
And then they all walk out of the room, and are ready to go play outside!  Granted I didnt see exactally what went on, but I can only imagine the comotion from what I heard!  I couldnt help but laugh.

Just last night Nick was asking Faye if she could help him clean up...she replies with " I can't, I'm bored"  (pretty sure she doesnt know what that means)..Nick then says "what?"  to which she answers "I cant I'm busy."

She sure is busy, its fun to see her having fun again, and being a truly normal 4 year old little girl!