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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Saturday, April 16, 2011

Chemo Round 1: Week 1

"This week was a good week! Considering....I feel really grateful starting this week out on a good note....we know there are going to be bad days/ weeks! But starting out it is nice to have some good times!" -Stacey

We still don't know how the cancer cells are reacting to the chemo, but thank goodness Faye's side effects to it have been minimal so far. The hope is that after 2 rounds of chemo the cancer cells will be all gone, she'll be in remission and then receive 3 more rounds of chemo to keep it away. If after 2 rounds of chemo there are still cancer cells she will have to have a bone marrow transplant. Nick, Stacey, Mitchell and even Nixon will need to be tested to see if someone is a match. Siblings are typically the best bet for a match. (Nixon won't be able to be a donor but they need to know if he can be if it comes back down the road.)

Here is a breakdown of each day on chemo:

Tuesday: Faye had an echo cardiogram, a PICC line placed, a lumbar puncture, spinal tap, and a dose of AraC-IT. (AraC is one of her chemo medicines. "IT" means through a lumbar puncture, "IV" means through her IV.) She was groggy from being sedated and threw up a lot. The good thing about last week's spinal fluid being clear of cancer is that she won't have to have a lumbar puncture every 4 days to keep checking it. Yay! That night Grandpa Mike had to say "bye". :(

Wednesday: Faye had 2 doses of AraC-IV, 1 dose of Daunorubicine and 1 dose of Etopocide (VP-16). She responded well! She was a little ornery but mostly in good spirits. She got in and out of bed by herself and walked to the potty. One of the side effects she had was diarrhea. No fun! Stacey switched Nick at the hospital (due to his sore throat) and Nick and Mitchell stayed in a hotel in Houston. The next morning, they came and got Nixon from Stacey. (They decided it wasn't going to work keeping him with Stacey when she's at the hospital. Faye requires too much attention.) And lots of bottles were purchased. Stacey's mom, Mary Ann, got in and went straight to the hospital to help.

Thursday: Another 2 doses of AraC-IV and 1 dose of VP-16. Faye felt more active, was being silly, and used her IV stand as a scooter! (video below)

Friday: Faye received 2 doses of AraC-IV, 1 dose of Daunorubicine, and 1 dose VP-16. Her bum has become very sore from the chemicals. :( Nick and Stacey have to wear rubber gloves to help her go to the bathroom to make sure they don't get any chemicals in their system. Such scary stuff to be pumping into our little Faye! The chemicals can also damage the cells in her mouth and give her sores, so she has to use a special mouthwash 3xs a day. She doesn't like it. "It's too spicy." But if she doesn't take it Nick and Stacey have to use a spongy swab which she likes even less. So, when threatened with that, she does it. Nick came back to the hospital and Stacey went home to the boys.

Saturday: It's looking like a pattern: 2 doses AraC-IV and 1 dose of VP-16. Poor Faye is on "isolation/contact watch" because she has a cough. That means she can't leave her room to go play in other areas of the hospital. That has got to make you so stir crazy!

The hospital has provided Faye with some new discoveries. She loves Golden Grahams! And Connect Four! And got her first Barbie! One of her favorite things to do is look out her window and see all the cars, buses and cabs that go by...and especially the commuter rail.

She is getting better about when nurses come in. They are constantly coming in to check her blood pressure and temperature. Now instead of hiding under the blanket, she will stick out her leg or even pull her little pant leg up for them to check her blood pressure and just goes through the motions letting them stick the thermometer in her mouth to get a temperature. On Friday when the nurse walked in with her machine to take her blood pressure and temp, she looked over at the door, saw the nurse and said "Uggg again" and sighed.

Nick has started to talk with her about losing her hair. He asked her if she'd like to get her hair cut short and she said yes! And says her hair will grow back big and pretty like "Puhtunzel".

Nick and Stacey have a system in place for hospital/home duty. Monday through Thursday Nick will work 10 hour days while Stacey's at the hospital and whichever family member is down helping will take care of the house and boys. (I can't wait!) Thursday night Nick will switch Stacey and stay the weekend with Faye while Stacey can be home with Mitchell and finally be with her baby! But this means husband and wife have a to go a long time without seeing much of each other. Nick said when it's over they'd have to play out the last scene in You've Got Mail where they meet in the park and instead of yelling "Brinkley" Nick will yell "Mitchell" and Stacey will say "I wanted it to be you." haha!

Now for pictures! Yay! And to make them even better, I've got some captions from Stacey! (in quotations)

"This crown Daddy and Faye made, well mostly Dad, he created it! Anyone who walks into the hospital room is greatly impressed!"




"Mitchell has a bit of a cold, so he is not able to go in the room with Faye. She can't wait til he can come hang out in her room with her and watch Tangled! But for now him and dad make funny faces through a corner window!" (Except Mitchell left Nick hangin' here to make him look crazy. Good job, Mitchell!) "...She loves these boys, they are always good for a laugh!"

"Gifts she received already....people are being so generous, but she genuinely loves everything, it makes her smile to see a new something someone has sent her!"

"The night after Faye had her picc line put in, and she woke up, she was not able to keep anything down, and all she wanted was a turkey sandwich! I told her we had to make sure we could keep some juice down before we graduated to trying a turkey sandwich! She woke up at about 2:30 in the morning tried some juice and was able to keep that down, she fell back asleep, but as soon as she woke up again she was asking for a turkey sandwich! Finally for lunch the next day she was able to have her turkey sandwich!" (What does a girl gotta do around here to get a turkey sandwich?!)

"The evolution of the IV stand: First, she would just stand on one of the feet while it was stationary, then she moved onto standing on it while I pulled her out of the bathroom after taking a bathroom break! And now she has already graduated to scooting around on it like it is a scooter!"




"More presents......She especially loves the bunny and blanket...this girl can never have enough soft fuzzy blankets! Now if only we could get her to rotate so we could get some of them washed!"

Chemo means one SLEEPY Faye.

Playing her version of Connect Four. Just putting in all the pieces and dumping them out.

More sleepy medicine

The "spicy" mouthwash. Bottoms up!

"A balloon for Faye from Mitchell!"

"The primary kids were so nice to send Faye cards, so she is coloring a picture to send back to them."

"In all of her hard work she still finds time to take care of her baby!"

"She told me I didn't take a picture of her blood! So this was a Faye picture request! Here is where her first IV was put in, until they had it switched to the picc line! She hated taking the IV out, but really who would blame her, I hate having that done too!"

Golden Grahams and a crazy straw.

Nixon got to sleep in a drawer at the hotel. What a good boy!


A "kitchen barbie" from Nick's coworkers!

She really loves it!

Grandma Mary Ann comes to visit!


"Floppy Hat Faye loves her some fruit! Strawberries and raspberries are her favorites!"

The boys back at home without their girls. Mary Ann said Nick slept with Faye's pillow. :(

Thank you so much to everyone who has reached out to Faye and her family. I hope you will all continue to pray for them throughout the whole journey. It's going to be a long six months where so many things can go wrong. This is what Nick had to say about the love they've been shown:

"I am so thankful to everyone who has stepped up in so many ways. It is such a comfort to me during this. It has been overwhelming to say the least and we need to be humble enough to allow people to help in any way they can. Faye and Stacey deserve absolutely anything anyone is willing to offer in help, love, and prayers. It has been such an uplift and inspiration for Stacey and I to get the offers of support and words of encouragement. We have been truly touched by the kindness and generosity. We are in for a difficult and trying time and we feel so blessed to have such wonderful people that care about Faye enough to try and do whatever they can to help her become a survivor of this. I love you all so much. Thank you. I have been praying since this situation began for a miracle and I am convinced that all of you and the others that are and will help are that miracle. " -Nick

Make sure to check out Faye's 'Thank You' at the bottom of the page!

17 comments:

katie ellis said...

What a great post! It's nice to have a picture of what she is going through and where she is. Baby Nixon looks just like Nick! So grateful Faye has had a good week. She is A-DORE-A-BLE!!

Katie Ellis said...

Oh and I am VERY impressed by Nick's crown making skills!!

Cute Carbines said...

I am so glad she is doing so well this week! Abbie was so sad that she missed the phone call from Faye, we will have to try again. This post shows how strong Faye is and how hard she is going to fight! I love you guys!

Tracy said...

So glad that things are off to a good start and that Faye's spirits are still high! Thanks for the update and the cute pictures of Nixon (what a chunk!). As always we will continue praying and helping where we can!

Thiago & Teri said...

Oh friends...can't believe this post. These pictures are adorable. Even in the middle of all this, those smiles never leave your faces. Sounds like a great week considering what you are up against. What a little trooper she is, and so beautiful...she is so beautiful, just like her momma. Sweet Nixon, what a way to come in to this world. Hope he is doing okay with everything. Praying that Mitchell's cough goes away so he can go in and be with his sister. Stace, I will call you this week sometime if thats okay. Love to you all, 1 week down you guys. You can do this!

Chalisse Martineau said...

Thanks for doing this blog! Our thoughts and prayers are with you all.

Eric and Jenny said...

Oh dear each and every picture made me cry, not out of sadness but out of love for your dear family. You are so special, each and every one of you, Stace and Nick what a blessing those babies have with you guys as parents.

Lets see loved Mitchell leaving Nick hanging, too funny! Nixon sleeping in the drawer, precious and little princess Faye in her crown, so cute.

I am so happy the first week went off reasonably well, it's a sign of good things to come, love you all!

Lark (SparkyLarky) said...

Oh I am LOVING all these pictures!

I am just wondering if perhaps I could get an address where to send a little something to Faye?

And I am wanting to share this story with my Activity Day girls. I just know they will want to send her something also.

You can leave me a message on my blog, just go to the "contact me" for my email address.

http://larkscountryheart.blogspot.com/

Thank you! And you are in OUR prayers!

Ashlie said...

Hey Stacey, I am a friend of Jenny Smith's I read a blog post about your little girl and also she has link to this blog on her blog....anyways I doubt you will remember me nor do I expect you to but I just wanted you to know you are in my prayers and I know you will get through this trial. Tell your sweet little girl GO FIGHT WIN, FAYE!!!! I don't want you to think I am some crazy blog stalker but I am going to post this link on to my blog so others can donate if that is alright with you??

hoLLY said...

Stacey, I just found your blog! and after reading and finding out about your sweet little girl, I am literally in tears right now! My heart goes out to you and your adoarbale family!! I can't imagine what you guys are going thru right now! especially just having a new little one! congrats by the way, he is stinkin cute! But I know you guys are strong and so is little Faye!! She is seriously so adorable! Our prayers are with you!! xoxo
Amos family

Kim Smith said...

Love the updates. We would love to send Faye a little gift at the hospital. How do we do that? Hang in there.

James and Kim Smith

Isabel said...

Thank you for keeping us updated! This little girl is such a great example of strength! She is just a ray of sunshine! You have no idea how much I wish I could be there to lighten your load! I will be fasting for her,and praying every day!

Genn said...

Just checking in and so glad to read that things have gone well so far. Faye is such a darling sweet thing. Stay strong Nick and Stacey! Much love to you all from Ca. Keeping you in my prayers.
xoxo.

The Nelsons said...

@Ashlie: Please feel free to put this link on your blog, Thank you!
@Kim: if you can send an email to fayesfight@gmail.com then I can reply with an address to send to the hospital. Thanks!!
(not trying to pretend to be Stacey... this is Nick's sister)

Dixie Meldrum said...

I'm so proud of you guys! To see the smiles on all your faces is truly inspirational. Nick and Stacy, your family is adorable!! The video of Faye made me laugh and laugh!! Your family is inspiring everyone around you. You will always be in our thoughts and prayers. Love from Utah!

Cole

Mitch and Stacie said...

Man you guys are tough! You already have strengthened my Faith through your courage. We are praying for you guys, best of luck to little Fay!-Stacie (Lifferth) Dorius

Holly said...

Thank you Faye for the beautiful card to the primary!! Everyone love receiving it from you! I showed them your video and they really liked it and laughed when you got silly with your voice. We're praying for you and love you very much!