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