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.
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 store....so 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 me....you 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!
Last week was exciting...a day that we have been waiting for forever! Faye finally got her line taken out last Tuesday...here 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 3:15...so 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!
The following was written by Stacey and has been reviewed with comments and/or corrections have been made by Nick (shown in blue).
We woke up the morning they were sending us home and the line for her hats had broken, and fallen down....I think the hats were just as ready to be done as we were!
Taking it all down....after we decorated for Faye's birthday last round we decided for this round we should do it again! So we had made these little strawberries and swirlies!
Dads contribution....this is just a little example, but he wrote Fayes name all these different ways and hung them up!
One Last peekabo through the hospital bed!
Yeah last Hospital Chemo!
A few families from church made signs and were waiting on the side of the road for us when we got home! I had no idea, Nick knew what was going on! It made me so happy. It's a good thing I was wearing sunglasses.... Faye was so excited to see Mitchell (Mitchell was right at the front of the kids so as we drove past Faye saw him. As we slowly we kept driving, she started to cry, so we stopped the car and got her out so she could see Mitchell. We decided she was confused, she didnt understand why we were leaving Mitchell)...and then of course Nixon!
Can you believe all this "STUFF" we had in one little hospital room! Me neither!
Our friends at church were so wonderful...when they welcomed us home (as if that wasnt good enough) They had this big basket of treats, toys, and a few other things..........they are so wonderful!
Getting back into the swing of things! Helping Dad clean out the car!
This is definitely one of my best pictures.
What would time at home be with out a fort? The whole room rearranged, sheets tied to the ceiling fan....Dad really knows how to do it right! The kids loved it!
And of course what would a fort be without treats and a movie!
Grandma was even nice enough to climb in!
Plenty of bike rides! It makes us so happy to see her riding a bike, because before all of this happened the idea of her using her legs to even walk, let alone ride a bike...unheard of!
Little Miss Thing!
Faye always wanted to play wedding when she first got home! Mitchell has decided he does not want to play wedding! He had a really hard time at first, cuz he is such a sweet brother! He said "I know I should just do whatever Faye wants to, to make her happy, but I just really dont want to play wedding!" Poor Mitchell, Faye even found a ring box, put one of her rings in it and wanted Mitchell to give it to her. We told her Dad would play wedding with her, but that wasnt good enough, "He's already married" she said. So we told her that when Nixon gets a little bigger she could probably convince him to play wedding with her...she decided that was a great idea! So now poor Nixon! I feel like this is the most accurate game of marriage I have ever witnessed. There a few different ways to look at this. 1. I told Mitchell that it's really good practice. Marriage is all about doing stuff for your wife that you don't want to. 2. The first reason gives some reasoning to Mitchells argument of not wanting to play. If he is going to have to go through this later he should be able to enjoy the freedom while he's got it. 3. What they both don't know is that them arguing about it makes it seem like they are neck deep into a game of marriage already. I think I will be playing out the third scenario once Stacey reads this. I love you Stace.
Oh, the talks we need to have with her are endless after coming home! It is really hard coming from the hospital where we were happy to get her to eat whatever she would, sleep whenever she could, and do whatever to make her happy! Now trying to get her to go to bed at night has been the biggest challenge! She flashes that sweet smile at her dad and she can do whatever she wants! I really don't see what the big deal is. This is a strategic move on my part. I am trying to bring her in as close as I can so that when the time comes for me to scare off boys and convince Faye that none of them are good enough for her she will believe and trust me!
She gets frustrated easily when she doesnt get what she wants and storms off to her room, or cries! It has been really hard for me to not get frustrated, becasue you think of all she has been through, but then also we have to get back to normal and she has to learn to follow rules, and share! Its really is a bit of a challenge! Again, my fault. I still struggle with this in my 30's. She's a four year old girl and it comes with the territory. I think it has been just as difficult for us, er ...... me, to not give her everything she wants as it is for her not to expect it.
We went back to clinic last Monday, they had an art show on Sunday with art the cancer kids had drawn, luckily it was still up on Monday so we could see it!
"Rainbow Princess"
(Faye made this in the hospital one day with dad)
Fence Post Girl, one day when we went into clinic Faye made this while we were waiting to be seen by the doctor! We werent able to finish it, but Faye had all the stuff picked out, so someone else finished it for us! We were happy to see this little girl in the art show too!
This past weekend Aunt Holly was able to come visit! It was a good weekend! Is it just me or do both of my boys look more feminine than Faye in this picture? (Nixon's raised limp hand as if responding by saying "fresh" and Mitchell's bright pink shirt)
Grandma and Holly left on Sunday, then Grandpa Mike came in that evening! With him he brought this Hannah Montana wig...Faye was a big fan of this long hair!
The other day she comes into the bathroom holding two little elastics and tells me she wants her hair in ponytails. She was dead serious, so I said: "Sure.
We will see if we can get two ponytails in there". (She does have a few "longer" strands hanging in there) Just as I was going to see what I could do she got sad, dropped the elastics, and went and sat on her bed. I followed her into her room and asked her what was wrong. Our conversation went like this:
"But I dont have any hair to put in ponytails"
"But you will one day"
"And is it never going to fall out again?"
"Well if your sick comes back your hair might fall out again"
"Ugg but it is taking forever"
"I know but one day it will be back and long and we could put it in ponytails, braids, or whatever you want"
"okay"
This conversation just broke my heart. She has never cared yet that she doesnt have hair...or realized it I dont think. But today she was truly devistated about her hair. I wanted her to know that it might fall out again, so she would be okay with it if it happened again!
And of course Faye puts Grandpa right to work, being her assistant while she paints her nails!
We went for another clinic visit yesterday! Faye passed the time by writing her alphabet on the table!
"Hmmmm what letter comes next?"
Counts:
WBC: 1.41
HGB: 10.1
Platelets: 141
ANC: 640
Everything is looking good the doctor says, so the plan is to go in next Tuesday for a bone marrow biopsy, and get her PICC line removed!
When we were getting ready to go to clinic Faye was telling me we needed to get all her stuff in the car, I think she was confused when I told her we weren't staying! After clinic we went to see our friends on the 9th floor, when we got up there Faye says "Now which room is mine?"
We took this little picture up for the nurses to hang in the break room! It was Fayes favorite thing to scare the nurses, and they were always nice enough to play along...even if they already saw her!
She is having a wonderful time holding this brother of hers! You can see he really likes it too!
Being home is wonderful! It has occasional challenges but that just makes it feel somewhat normal again! Fayes loves to play with her dolls, dress up, ride her bike, take Mitchell to school..and pick him up, or make "Recipes" (help me cook).
So I guess you could say " We Could Get Used To This"....or better yet "We Are Getting Used To This"
(When my friend Jenny came to stay with us and watch the boys, one weekend her and I got to do a little shopping, I found these PJ's on the clearance rack at Gymboree and just knew I needed to have them for Faye. We both got a little teary just thinking about this and how much more it means to my sweet little Faye! I have been hanging on to them, and Nick and I gave them to her for her first night of staying home!)
None of this could have been possible with the amazing Nurses and Doctors at Texas Children's! When Faye first got there she wouldn't say anything to anyone, but by the time the party was over, she was giving hugs, high fives, and taking pictures!
One last hospital dressing change to send us on our way! Also at first Faye would scream the whole time this was being done, now when they walk in she says to them "I am going to be tough!"
"Big Love" they came every Thursday with carts of stuff for the kids and families...treats, toys, and personal hygiene stuff. Faye loved when these guys came, and they were always so generous! These people are Awesome!
One last weigh in...imagine at first it was such a chore to get Faye to even stand on this scale...now she just hops right up!
Andrea...Nurse Practitioner from he purple team! She will sorely be missed...we Loved our Purple team. They have different teams of physicians on the floor with a different color to label each team. We got spoiled by having them switch us to the purple team every time we would get readmitted. It was nice having the same people come check out Faye everyday!
Faye's new friend Aiden...he recently had a relapse of AML so they are back again! But these two became quick best friends. The second he would walk out of his room he would yell "Miss Faye" and be wondering where she was. This picture brings tears to my eyes. We were getting ready to go home, while Aiden was getting ready to head down to get a bone marrow biopsy to see if this round of chemo was working. The first round that Aiden got after his relapse didn't work so they had do a new round of chemo trying different medicines. As they left I couldn't help but cry. It made for such a bittersweet day, we were heading home, but the McSpadden family was waiting to hear news that could change everything! Luckily we found out later that day that the chemo was working! YEAH...such wonderful news!
Love this boy Aiden, you cant help but love him. And his parents, they are wonderful! They have been great to have around to be able to talk to. I will miss our walks and talks following Faye and Aiden around the halls!
Stephanie (another Nurse practitioner from the purple team) Giving Faye a "WAY TO GO" high five!
One last hug to send us on our way!
And one Final shot to say.....WE DID IT!
I think its funny to look at this picture compared to our first pictures! At first we were geared up ready to go, but these last pictures you can tell this was wearing on us! Especially towards the end I would just tell Nick "I need a vacation". But being home is just as good as any vacation! Its been super fun being at home. I will post tomorrow about the Welcome home party, and the fun we have been having!
