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 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!


Eric and Jenny said...

Well this was fun to read, I loved the little story of her realizing she could get her arm what. I can just picture that cute little face thinking wait a minute this arm gets to go in, love it!

Mitchell is such a good brother to put up with his little sister doing his hair for him, I bet it looked fantastic.

And now Stace I am off to watch Growing Pains, thanks again for my wake up call, it was delightful!

Eric and Jenny said...

I meant her arm wet, but you picked up on that right?

Thiago & Teri said...

Bye-bye line..that is great news. How weird and wonderful that must be for you all to look at her with no wires or attachments. I still shake my head at all she has been through and what a tough little girl she has been. Some adults can't even handle that, let alone a four year old. Faye is my little hero...all of you are. Love all that you have been up to. Especially the picnic, complete with basket and everything. Keep having you guys.

Souli & Ashley said...

I'm so glad she is doing so well. I did your moms hair yesterday and she told me all the fun activities you have been doing. I bet it is so nice to be all under one roof again. I'm so glad everything went the way is did. YOu all are so strong and such an inspiration to me.

Ryan and Hetz said...

That is so awesome! I'm so excited for you guys. I can't imagine how good it feels to be at home!

Celeste and Jared said...

Yay! What good news! Thanks for posting all the happenings! It makes me feel like we still can keep in touch! Hope you got our cards the other week!! We are so excited for Faye and your sweet family.

The Nelsons said...

So so fun to read. Thanks for keeping us so informed, Stace. Faye is halarious and life must feel so good right now. I love you guys!

Piano Mom said...

Wow, her blood work looks SO GOOD for just finishing! Erin's WBC was always low....for almost 6 months after treatment finished. I'm so glad you guys are getting back to normal, what a wild ride! Seriously, I'm so thankful you are doing well.

Cat said...

Yay for normal!!!

Katie Ellis said...

Yea for normal and yea for boring!!

Katelyn said...

I'm so glad to hear things are going well! You guys are all so amazing!