I Mustache you......who is having more fun?

These two........ I cant decide who loves their time together more!  Its not just that Faye has her Dad wrapped around her little finger. Dad has Faye wrapped around his too!  And as the Mom and Wife of these two I wouldn't want it any other way....not that I don't give them both a hard time about it still!

 Monday they made Faye go to a pill swallowing class!  I went along, but I had to wait outside. All I know is that she swallowed a tiny pill that morning just fine.  And after the class she came out in tears, and wanted to go straight back to the room.  They wanted Faye to show me how well she could swallow pills.  Faye didnt want to.  And the next time they brought the small pill for her to swallow she wasnt quite as willing!  Sooooo not so sure how effective their pill swallowing plan/class is!  On the plus side, she did get picked up and "driven" to her appointment. It's the closest to a celebrity I have ever been! 

One of Faye's friends sent her this doll.  She had me do the dolls hair, french braid with a ponytail at the bottom.  And then, of course, after Faye's bath it was requested that I do the same to Faye.  Friends gave us a sleep mask, which Faye took over right away!  When the doll came with one it was like a match made in heaven.  Faye is not letting some silly 'ol hospital interrupt her beauty sleep!  

We spent a good part of the afternoon coloring this picture!  I had so much fun doing it, I asked her if she wanted to do another one....she was excited and she picked out Jasmine.  She colored for about 5 mins, and then decided she was done!  Of course I had to finish it...but it didn't look quite as good as this one.

On Tuesday Dad and Mom switched.  I finally got to go home to see the boys.  And Dad got some one on one time with his girl!  Both were equally needed!

Mom left just in time to miss the first PICC line dressing change.  Dad is just getting his hearing back!  She always hates having to do that.  Eventually she gets used to it.  The guy who was doing it said there is some stuff called Brava adhesive remover, they dont carry it at the hospital, but Dad ordered some online and I hope it arrives for this week's dressing change.

Someone sent Faye this pillow.You take these squares of fabric and punch them through marked holes.  She has been working on it all week here and there.  Everyone that sees it says how cool they think it is. We like a "take a long time" project!

Dad had to expand her game horizons by teaching her a few new ones.  After far too many frozen board game matches she is now skilled at Suduko, crazy 8s, and old maid.

On Wednesday she got some platelets.....

And then...you knew it was coming!  It was time for Faye to get a haircut!  We found it is easier to cut it short than have long hair falling out every where.  I mean the hair gets everywhere.  We are prepared this time with a lint roller to keep the hair cleaned up! 

But look how long her hair is....she has been blessed with good hair!

They have a little salon on the 16th floor.  So Faye got her mask on (to protect from any outside germs) and dad and her headed up to get a cut!

At first when we found out the cancer was back Faye told us that she didn't want to cut her hair this time.  As time went on she decided she wanted to see which ponytail was longer...this time or last time!  So Dad brought her other ponytail down to the hospital so she could compare.

Its amazing how much longer,  thicker..and a bit darker her hair is now.

And the finished product! Honestly we weren't loving it at first.  Nick said...."well in about a week or so you don't have to worry about it anymore!"  I suppose it is just the shock.You don't realize how different a little haircut can make someone look!  

But then, of course, after a nice bath, I was in love.....she just looks so darn cute no matter what she does!

Faye doesn't love it.  She still misses her long hair! 

This is how Faye gets around when Dad is here!

After another platelet transfusion she got all ready to watch the Aggie game with Dad on Saturday!  I am pretty sure she was super excited about it. Her face doesn't quite show her excitement!

This is Faye's little brother Jay.  He turned one on Saturday. I loaded up the boys and we went down to visit Faye so she could see him eat his cake.  This is the first time the boys and Faye have seen each other since the 8th. 

I think it was much needed!  Jay was in haven to be back with his "Mini Mommy".  That's a name Faye has taken upon herself at our house.

Dad and Faye even took a little trip down to the gift shop to pick Jay out a present.....He LOVED it, can't you tell?

 Monster cake for our little Monster! 

 The day that Faye got her bone marrow biopsy, there was alot of waiting and she was getting grumpy because she couldn't eat until after the procedure.  So to take her mind off eating we tried to think of a theme for Jay's birthday.  We pulled up Pinterest and looked at ideas.  She picked out a monster cake.  I was then committed and couldn't disappoint!

Just a bit of video from our time at the hospital!

Faye took cupcakes around to the nurses after Jay wanted nothing to do with Cake!

A few last pictures before its time to say goodbye.

We had so much fun hanging out with Faye!  But our excitement was short lived.  Before I even got back home with the boys, Nick called and said Faye's temp was trending upwards. At 8:30 it was 99.8.  She felt warm, she wasn't acting like she felt well.  Quickly my heart sank.  Nick and I had been questioning if we should bring the boys up. Now, if she was getting sick, it's the first thing that came to my mind.  But then I thought about how happy they all were to be with each other. It was very bittersweet.  I got home and was getting the boys situated when he called and said it was at 100.7  It all of the sudden got real again.  It's the one thing they don't want these kids to get...A FEVER!  The docs and nurses were on standby with all sorts of medicine and plans of action.  Then at 10:30 it went back down to 99, then at 11:30 down to 98, and she has been fine ever since. But to say it scared us would be an understatement.

She got a blood transfusion today (Sunday).  Those always perk her up.

As I was typing up the blog post, Nick sent me this picture with the caption:

"This is the face she gives me when she wins every game we play and says 'I am the queen of this game'."

Hey, when you're good you're good, right!?

So there you go....another week down!  Tomorrow (Monday), Nick and I go to meet with the Bone Marrow Doctors.   Hopefully to get some questions answered and to get a better idea of how the rest of this hospital stay is going to go.

As always a great big hug and thank you to everyone out there for all your love and support!  We are blessed.   

Week one down.......and What the heck is Chemo anyways?

 Well we made it through the first week of this hospital stay.  The first week is rough.  Getting used to living in the hospital, getting started again... it is very surreal walking these halls again, it feels so much the same, but yet so very different. 

Faye had her spinal tap on Tuesday morning, and after that she was feeling pretty good.... good enough to go out and pick a toy.

On Tuesday B.I.G Love comes around with two carts, one with toys for the kids, and the other with snacks and hygiene supplies that might be useful to have.  They also drop off a paper that you can fill out with needs or wants up to $25 dollars, and they will go to the store pick it up and bring it to you on Friday. 

Everyday she takes a few minutes to decide what to eat for the next day.  She already is onto hospital food.... its not good!  But she is especially not fond of the scrambled eggs.... "not ordering those again"!

With the start of chemo she also had to start doing mouthwash (supposed to be 4...we can usually get three times a day) and also do some eyedrops every six hours (even during the night) So this is a face of a girl who doesn't love doing either... at first... she now tolerates both (most of the time).

Also on Tuesday she had an old friend come visit.  This is Hannah, she had just been diagnosed when Faye was about to go home last time.  She was at clinic on Tuesday for a check up....I didn't realize that I had taken a blurry picture until I looked at it much later....

Dad came up to visit and bring a few things.... one of which was the Wii, Mitchell being the most wonderful big brother ever, sacrificed his Wii time to help Faye pass the time.

This is the face of a girl who just bowled a strike!

It wasn't too much after our rousing bowling game that Faye started to feel the effects of the spinal tap.  She was complaining about her neck hurting, we put a warm rag on it and I would rub it.  She fell asleep for a bit, and then woke up with an incredibly massive headache.  She would barely open her eyes, and was crying at the pain it was causing.  We tried warm rags, I tried to rub her head, but nothing seemed to help.  Finally one of the nurses suggest we give her a bit of caffeine, which could help the headache.

Needless to say it worked a bit, head still hurt, but at least it was tolerable.

Little did we know this was the start of it.  At around 3 they started Cytarabine, which caused Faye to throw up and have a fever (got up to 103).  So between throwing up and the fever, they had to take blood to do cultures, to make sure she didn't have some sort of infection, and started antibiotics.  Tuesday night was a long night.

This is how we spent Wednesday.... feeling crummy! Most of our time for the next little bit was spent like this.  She didn't want her picture taken and didn't want to do anything but lay there... and definitely didn't want to eat anything.

Thursday morning we spent with her best friends....a water bottle and a barf bucket!

On Thursdays volunteers bring around pizza.  That seemed to perk Faye up when they poked their head in and asked if we wanted some pizza.  She looked at me and said "Like the triangle kind?". She asked this because remember the hospital food.... the pizza she had ordered a few days back was this thick circle thing that looked possibly more like a pie than a pizza... I can't really describe it, but I don't blame her for questioning the type of food they bring around here! ;) She only ate one little bite of her cheese pizza she was so excited about and decided she couldn't eat anymore.

Grandpa Joe was in town for work this week.....I think people are going to stop planning trips to visit us because the odds of something going wrong are going up!  We were grateful he was here, and he stopped by on Thursday evening because he was flying out on Friday morning.  When he came it was the most energy I had seen her have in two days.  It was nice to see her perk up for even just a bit!

Soon after Grandpa left we started feeling not so well again.... and went back to hanging out with our best friends and sleeping!

Friday morning we were greeted with a visit from Dr. Thompson.  Again, a Dr. from our last time around.  Our actual Dr. was out of town when Faye was really sick in one of the rounds of chemo last time, and Dr. Thompson was the one looking over Faye. 

One of the things Faye was known for around here was not talking to anyone.  It was Dr. Thompson's mission last time to get Faye to talk to him. That was kind of their running thing, that she wouldn't talk to him.  But she really did like him, when she would see him she would point him out, but only if he was far enough away to not realize she was acknowledging him.  So when he came to visit, he asked Faye, "Do know how many words you have ever said to me?". She smiled and replied with, "Zero". He quickly got really excited and said, "Nope. Now you have said one word to me." She smiled. 

It also meant a lot to us that he would come check on us because not only does he not work at this hospital anymore, but his son was in a horrific car accident over this past summer, spent 16 days in a coma and is still in the hospital. We will forever be grateful to Dr. Thompson and what he has done for us.

By Friday afternoon we were feeling good enough to paint a treasure box.  Still no eating..... but no more fevers either.

I couldn't get Faye to take a picture without blocking her face..... so I told her that she looked so super cute and that her Dad would probably love to see a picture of her.  Works every time... this girl loves her dad!  And of course she loves these socks... a good friend of mine sent them to her!

We have been able to Skype with the boys and a few friends.... she gets so excited about skyping, but then when she gets on she gets so shy!

Friends on her Facebook page asked everyone to send her cards.... you can get on the hospital website here and type up a message and send a card to her.  Then daily they deliver cards to the patients.  People did not disappoint.....

These cards were full of words of encouragement and jokes!  She loved reading all of them.  She would first go through them to see who they were from, then she would read them out loud, (unless the nurse came in, then she would read them silently to herself). If there was a joke on one she would turn sideways so that I could not see the joke and she would read it to me.

As of today she has received 53 cards!

All of Faye's friends from primary (all the children she attends church with) made this card for her.  She has it hanging right below the TV, so she can always see it, right in the front of her room!

Friday was the first of many Blood Transfusions.  When they had this hooked up  and going into Faye, she asked me, "Why are they taking so much blood out of me?". She has only seen (at least when she can remember) them taking samples of blood.  So, of course, she assumed this was the same.  I explained to her that people in the world donate and share their blood to help others who are sick, so this is in fact someone else's blood going into her to help her get better.

 Holden was a little boy who was in the hospital around when Faye was last time.  His Dad told me he is now 4 and doing well, a few scares, but doing good nonetheless.  Anyway, Holden's Dad coaches a soccer league and this weekend all the teams played in honor of Faye.  I guess they ran through banners that said "Go Faye" and everything. He said he will send me the pictures.  He brought some of the boys from the teams to meet Faye!  These boys were so cute and nice to take a picture for us.  They were all also 2nd graders. 

Nick picked this shirt up for Faye this week.... she just happened to pick it out today.  It is the perfect shirt for not only this picture..... but also for her situation!

After they left I asked Faye, "Aren't you glad that we got a bath and did your hair before they came?" I was teasing of course.  But she said, "Yes, I am glad because that would have been so embarrassing."

She has slowly been getting back her appetite.  We started out with goldfish, moved up to milk, peaches and pears.  And now on Sunday for lunch she made her own peanut butter and jelly sandwich. And ate the whole thing...minus the crust (she also cut off herself). I told her "my goodness you are getting so big to make your own lunch, what do you need me here for?". She just smiled and let me take these pictures!

So, our first week is in the books!  Not that we want to do it again, but we are feeling very fortunate with the way Faye has handled everything.  Even through the throwing up and not feeling well, she just did what she needed to do.  Sure she put up a few fights, asked to go home a few times.... and wanted her Dad!  But, all in all, we are feeling good about things.

Last time when Faye was able to finally get out of her room, and was over the initial symptoms of chemo, she wanted to be out in the hall constantly riding her bike....

She could usually be found riding this bike as fast as she could go, with Mom or Dad following as fast as we could go with her IV pole, so her tubes wouldn't get pulled out!  It was important to us to do whatever we could to make her happy....

I don't think that is going to happen this time.  She can go out of the room now, but I can barely talk her into just taking a walk around the floor.  So, although she may not want to go ride a bike around the floor, the mission is still the same: do whatever we can to make her happy!

We appreciate everything you all are doing to make this all possible.  The messages, the help the meals, the support.  We could not do this without all of you!  Thank you doesn't even seem to be enough.  But I hope you all know what each of you mean to us, even if we are not able to tell you all personally.

What the heck is Chemo?
Basically Chemo for dummies.... which is how we understand it! ;)
Now for anyone who might not know....I know all of this can seem confusing... I know before we were thrown into this cancer world we were clueless as to what chemo actually was.... if I had to guess before I would have thought it was some sort of machine you went in, or were hooked up to or something... yep I really had no idea.  So here you go I will try and explain what Faye's getting chemo means as well as I can, because we have had quite a few people ask what everything means.

So first of all, Faye has a PICC line, which are tubes, like an IV, that are inserted in her arm and the tubes go up through her arm and just barely into the top of her heart. 

The PICC line is used to give the chemo medicine.  Chemo medicine is just liquid drugs that are given through an IV. There was one dose that was given via spinal tap (just a one shot deal, not constantly). 

So last time, Faye had 4 rounds of Chemo.  A round is a group of chemo meds delivered in a specified amount of doses over a certain time frame. Recovery time is included in the round and one round typically lasts 4-6 weeks. This chemo knocks her immune system down to nothing and then it takes a number of days for her immune system to build back up.  For Example: The round that she is doing now consists of:
Day 0: AraC (via spinal tap), G-CSF
Days 1-5: AraC, Fludarabine, G-CSF
Days 6-29: Wait for white blood cells to go down and then for them to come back up again.
Day 29: Bone marrow biopsy to see how the Leukemia cells responded to chemo. Decision will be made shortly after about next steps (more cancer chemo or go to marrow transplant).

There are a host of other medicines she takes daily throughout but these are the specific chemo one.  Now that we understand what chemo is we describe it as poison they use to try and kill stuff in your body with the hope your body can work normally afterwards.

No News is Good News

There have not been many updates to Faye's blog lately because we have been having too much fun being normal (if that's possible).  It is with a heavy heart that Stacey and I update this blog with news.  Bad news.  We found out on Friday, September 5th that Faye's cancer has returned. We are completely heart broken and scared.  She is back at Texas Children's beginning chemo treatments with the goal of a second remission to prepare for a bone marrow transplant.

Below is the story leading up to today followed by the game plan moving forward.  Which is exactly what we plan to continue doing......moving forward.  I hope too that we can make clear that while we are devastated, confused, angry, etc., we also recognize our Heavenly Father has provided so many wonderful blessings leading up to this day. These blessings have and will continue to lift us up and keep an eternal perspective while facing this trial. We absolutely feel His divine love for us through those lending helping hands and offering kind words.  His army of angels are around us and we cannot adequately express our appreciation.

Off and on for months, Faye has been having leg pains.  They would last anywhere from 3 days up to 7 or 8 in 4-5 week intervals.  Given her history we asked for blood tests almost every time. Each time her blood results looked great.  Faye went to her first day of school and came home complaining.  The next day (Tuesday) she reluctantly toughed it out and Stacey got a call at the end of the day from her teacher saying she had a rough day.  That night we decided we needed to call the doctor in the morning.

The doctor's office recommended giving it a few days. Stacey called me and we decided to take matters in to our own hands because we knew something was up.  We called right back and said we needed blood work done that day and if the results were good we need to be referred to an orthopedic doctor.  The results looked good and an appointment was set up for Friday with the otrho.  After a brief visit with him he thought everything seemed ok but xrays and MRI were options to dig deeper.  We asked for both and had them done later that day.

A long Labor Day weekend passed while Faye was still in pain.  Wednesday afternoon Stacey got a call from Faye's oncologist.  They noticed irregularities in her bone marrow.   She said we would need to come in for a bone marrow biopsy to rule out any of the bad stuff.  They don't see enough MRIs of kids post AML treatments to know if the irregularities were normal for her or if it was something else.  We were scheduled for Friday morning at 9am.

Friday morning we talked first with a oncology doc at the clinic building to discuss the MRI and what had been going on the past few months.  When discussing everything I had a sick feeling that it was going to be cancer but brushed it off as my typical paranoia.  After a lot of waiting she was finally taken back to get the IV, anesthesia, and two bone marrow aspirations (one in each hip).  We were told to head to the food court after she awoke, get lunch, and then have them page her oncology doc.  Faye did impressive work with her giant slice of cheese pizza and strawberry fanta after not being able to eat until the procedure was complete.

 We waited for the doc in the oncology clinic watching Despicable Me 2.  I was having such a good time with her at lunch and watching the movie that I had somewhat forgotten that sick feeling from earlier.  We saw her doc approaching and knew from the look on her face.  She put her hand on my shoulder and quietly said "It's not good." As I began to cry she then said "It's back".  There was a long silence (aside from my crying) and Faye finally asked "Why is daddy crying?"  I pulled it together momentarily so we could get her situated with a movie so we could talk at the table across the room.

Stacey had tears in her eyes but was the one keeping it together, as usual.  Her doc and another with her told us how shocked they were Faye's AML was back.  This far out with good blood counts is very unusual and rare. They told us they had many things in process and we could go home for the weekend and get started Monday.  We did our best to pull it together and go talk to Faye.  We sat by her and began to tell her that her cancer was back.  She immediately began to cry.  She looked up at us and said "I don't want to do it again." We calmed her down and she was relieved to find out she could come home for a couple days first.

Stacey drove us home and we called family telling them the news and crying a lot.  After a few calls I decided to stop and talk with Faye.  We both cheered up a bit and she said "Daddy, I wish they didn't make cancer."  I think we all agree.

We had a great weekend together hanging out, watching movies, playing games, and just trying to forget.  Some great friends helped Stacey find a photographer who was generous enough to help us get some family pictures on Saturday morning.  Our ward (local church congregation) rallied to figure out how they could help and fill any immediate needs while we were able to sit back and just be together. The only hiccup was the little boys got sick and I had to be on sick patrol while trying to keep everyone at a distance from Stacey and Faye.

Monday was a long day at the hospital.  Picc line was placed in her left arm.  Consultations with doctors.  Echo cardiogram.  More consultations with doctors.  Lot of papers to sign and disclaimers to review.  Around 5:30 or so we were finally done and just hanging out waiting for them to have a room ready over at the hospital on the oncology floor.  We sat in the clinic trying to come up with anything that would make her happy.  She was ready to lay down and zone out.  We found rows of pictures, quilts, and photographs and made a game out of guessing which was was each person's favorite.  She finally got to her room around 7.

Tuesday was the first dose of chemo via a spinal tap and the other preventative medicines.  Wednesday will begin the other chemo which will continue through the weekend.  On day 29 they will do another bone marrow biopsy to see if it is responding to the chemo.  Best case scenario is they can't see any of the AML and then we can wait for her counts to recover and head to bone marrow transplant. AML is a higher risk Leukemia with not as many good treatment options.  So her immune system will be knocked down to nothing for long stretches of time requiring her to remain hospitalized.

We hate that Faye has to do this and that her brothers have to deal with the wake it leaves behind at home.  However, we are so incredibly grateful for each of you that are concerned for her and offer kind words, support, and prayer.  We are so sorry to have to be here but so grateful we have you to lift us up and join us in calling on our Heavenly Father for His help.

 In recovery room after bone marrow biopsy.

Some of the fun papers we get to read.

 Faye getting dolled up by her mommy before pictures.  Some 'cheer her up' stuff from dad close by.

 Some one gave her a 'heart attack'

 Ready to do this!

Making a bracelet.

 Someone came by the room passing out press on nails.

 Waking up from the spinal tap.  Not happy.

 She thought it was great her nurse had the same name as mom.  Even better that she wanted to have a nail painting party.

 Purple with pink polka dots.

An old friend.  Nurse Katie used to work here but is now at another hospital.  She was nice enough to stop by and see Faye to make sure she was being taken care of.