The Sartins

Our Week in iPhone Photos (1/23-1/29/12)

2012-01-29T22:11:00.001-05:00

Monday

Watching something on YouTube. I don't remember what he was sucked into... it could've been Yo Gabba Gabba or videos of himself. But he really likes the KidsTV123 channel and usually watches a video or two after dinner. The songs are super catchy (maybe a tad annoying) and educational.

Tuesday

"Helping" clean out my purse and the diaper bag.

Showing his monkey what's going on outside.

Hallway bowling.

Wednesday

This week we studied Noah's and the ark. I'm trying thinking of coming up with a weekly curriculum for him kind of like homeschool preschool. Everything I've found for his age is a little too easy for him, but the next stage up is over his head, so I'm going to make up my own. (Maybe I'll write more about that later.)

We had dinner at Chick Fil A. He wanted to show the camera his waffle fry. Yum.

First time in the play area. He was a little hesitant to go in.

Thursday

Window markers. (I need to get some more.. his are drying up.)

Friday

We went to an indoor play place called Kazoing.

I thought he would be terrified of the inflatables but he was so brave.

Saturday

"Towboy"

Trying to put his "Neet Feet" on Giraffey. (They're still his favorite shoes and he's about to grow out of them.)

Sunday

Word Wagon - A new favorite.

"FIIIVE!" His favorite number.

We stayed in our PJs all day and didn't even do any of that laundry.

Watching the Pro Bowl.

It's been a pretty low key weekend. Alex was gone all day today (church, then taking pictures for Field of Kings upcoming album) so Sam didn't want to go to bed for me. Alex went in and I think he fell asleep in there. :) Sam is supposed to start accutane again this week. Please pray that his labs are perfect and pray that he'll start taking it in yogurt or food without protest again.

Also, I'll be shaving my head for St. Baldrick's again this year. You can click the button on the right side of the page to donate! :)

Chatting with Sam

2012-01-27T00:49:00.001-05:00

Sam loves to watch himself in photobooth on my computer. So while Alex was cooking dinner, I tried to get Sam to say a few little words just so you could hear his sweet voice.

He can very clearly make an "n" sound, can say "no," and has said "Noah" correctly before when talking about his pal Noah... but since we've been studying the story of Noah and the ark this week he seems completely unable to say it correctly. It comes out like "Leelah." Rainbow is always brainbow. Thomas is still "mow." (I don't get that one at all.) He's refusing to wear his hearing aids, (Really, he hides and throws a FIT when he sees them. He acts like I'm trying to stick hot pokers in his ears...) and that does have me the tiniest bit concerned about his speech. But he reproduces sounds that technically he shouldn't hear, so I'm not too concerned at this very moment. I might change my mind tomorrow. (Note to self: Reschedule his audiologist appointment from last week.)

Anyway... here ya go!

(Warning: There's a nice loud scream right at the 6 second mark...)

I just realized that the last paragraph sounds like, "Hey! What's wrong with my kid's speech?" Just to reiterate I'm just sharing this for the cuteness factor. I'm not concerned, think he's doing well, and we can understand most of what he says. At least when he takes his dang hands out of his mouth. ;)

Our Week in iPhone Photos (1/16-11/22/12)

2012-01-22T21:27:00.000-05:00

Alright. Getting back on track with this little feature this week.

Monday

Sam tried to hide under the chair so he wouldn't have to take his medicine.

We took Alex to work so we could have the car. I found some pictures he took of his feet. :)

He painted a little picture frame for my dad for his birthday.

Tuesday

My first Five Guys experience. It was delicious.. I just wish she had heard the "bacon" part of my little bacon cheeseburger order.

Sam saved some of his art from the doodle finger app to the camera roll.

Wednesday
Sam took more pictures of his feet/the carpet in the playroom.

He was playing without a diaper and said, "Oh! I pee pee! And started running toward the bathroom." He didn't make it but he helped clean it up.

Thursday

Well... this was kind of Wednesday night but technically Thursday.

He wouldn't leave the house without this ball. He even wanted to carry it into the library with him.

Also essential for leaving the house: A fully dressed Giraffey.

Watching his favorite Wiggles. Have you heard the news? The original Yellow Wiggle is coming back. I have mixed feelings about this.

Friday

Taking his UK bear to the potty.

UK bear in time out. He was giving him a little lecture in toddler gibberish then said, "Okay? Hug?"

Silly boy after nap time.

Saturday

We did lots of coloring and sticker sticking and made birthday cards for Sam's cousins Nick and Dylan.

Object essential to leaving the house: Yellow Marker. No cap.

We went to my parents' to celebrate Nick and Dylan's birthdays. Sam rode the super scary dangerous horse. I hate that thing.

Cousin Will

Sunday

"What mom? Just playing an alphabet game."

Big Bird hitchin' a ride on the dump truck.

Duck takin' a bath.

Alex was out of town for much of the week and Sam and I missed him. Sam kept walking around and checking in rooms asking for "Dad-deee." Plus he slept like junk because I think he knew that he would get me in the middle of the night instead of Alex. (We've been working on night weaning and backslid big time this week.) I hope you've had a good weekend and have a fantastic week!

Wordless Wednesday: Waking Up

2012-01-18T05:00:00.001-05:00

He has a name...

2012-01-16T18:35:00.000-05:00

And he shall be called "Captain."

Adding to Our Family

2012-01-14T22:49:00.000-05:00

We have a new addition to the Sartin household...

Sam got a fish today!

Sam is so funny. When we were suggesting names for him he rejected every single one. He paused at "Gordon" but didn't agree to it so our little fish doesn't have a name yet. If you have any suggestions I'll run them by the boss. ;)

When we got home from picking out the fish it was snowing some more. Sam was very interested in it. I planned on putting his snowsuit on and taking him back outside to investigate but I realized that those chucks from Peach's Neet Feet are the only shoes that he has that fit! They're the only ones he would wear for the longest time. He has since grown out of his sturdier shoes but since those were a smidge big to begin with they've lasted. (But probably not for much longer.)

So we watched the snow from the warmth of the house. Sam told Elmo about it and propped him up so he could see. ;)

Rice! I love it!

2012-01-11T22:19:00.001-05:00

So for those of you not on facebook, Sam peed on my laptop on Sunday night. Yes... peed. It was beneath the couch and he was standing next to the couch and peed the biggest pee any toddler has ever peed. Even though it was closed, the inside of my laptop was soaked. We were certain that it was fried. The "geniuses" at the apple store wouldn't even look at it. I had resigned myself to the fact that I was laptopless. But as a last resort at the insistance of the internet we took the back off and placed it in a container of rice. I was skeptical and Alex didn't even want to try it. But what could it hurt, right? A couple of days went by and we put the computer back together... and that sucker turned ON! I was so excited I think I peed a little. (Luckily not on my computer, though.) Seriously... I'm absolutely giddy to be posting from this thing.

SO. Since I missed last week's iPhone photo roundup here are some photos from the last week and a half. :)

Color Sorting. Puffy balls from the dollar spot at Target.

Naked butt. He loves his Percy Pillow Pet. He totally needs a full sized one, though.

Clinic. Labs looked great and he got started on his 3rd of the 6 extra cycles of accutane he's taking.

Time Out. I don't even remember what this was for but he's screaming into the corner.

Grocery shopping with his giraffe in the cart.

Fruit Smoothie for us to share. Yum!

He crawled into bed with me on Wednesday night and got sick. He was running a little fever and refused to put clean PJs back on. He didn't get sick anymore but has had a low grade temp off and on and just hasn't been 100% for the week.

After a long nap.

We have had some unseasonably warm weather so we've spent every minute we can playing outside soaking it up. He had a blast sending Diesel down the slide over and over again.

And Diesel had a go on the swing, too.

This balloon is from his BIRTHDAY.

He has a new Elmo obsession.

Finger painting.

His poor skin. The price we pay to try to get rid of every trace of cancer.

Alphabet Practice

2012-01-04T20:11:00.000-05:00

Our 2011 Recap

2012-01-02T21:59:00.003-05:00

January

Sam was admitted on the 14th for his 2nd stem cell transplant. It was a very stressful time with him not eating and me worrying that he was going to wean.

February

Once Sam started eating again things were much better. But there was still stress over the battle about whether or not to send him home on TPN. In the end I feel like I won and he only had TPN at home for one day.

March

Sam completed two weeks of radiation and I shaved my head!

April

Sam's central line broke and needed to be replaced, he had his first round of antibody therapy, he went on his very first Easter Egg Hunt in the hospital, and we found out that some crazy person was using his pictures to pretend that they had a kid with cancer.

May

Two hospital admissions and a generally yucky feeling boy.

June

Sam had cycle 3 of ch14.18 and got his hearing aids.

July

Two more admissions, but we spent some time outside!

August

August was eventful. Sam had his last scheduled admission, his central line broke and we were allowed to leave it out, he had his very first bath in the bathtub, and he was released to resume normal people activities out in public!

September

I wrote a post about fear and faith that I am glad I reread as I was looking through posts for this one, Sam saw his first movie in the theater (The Lion King,) an we had a blast at the Carnival of Life.

October

Sam got his first haircut, I started blogging our weeks in iPhone photos, Sam had a clean PET scan (which was a huge relief but still gives conflicting feelings because of the not-clean-MIBG,) we road-tripped to South Carolina, and Sam Wiggle went trick-or-treating.

November

We celebrated Sam's 2nd birthday with a big party.

December

Christmas. Christmas crafts, handmade Christmas gifts, classic crying on Santa's lap picture.

I feel like I was living in a fog for much of 2011. I couldn't remember a lot of it until I started sifting through the archives to write this post. I was just going through the motions, still in survival mode, trying to keep out the feelings of fear and uncertainty but really putting up walls and keeping myself from feeling anything at all. We had our share of tough times this year, but overall I think it was a great year and definitely ended on a high note.

The fog is starting to lift and my optimism is coming back. When I was putting up those walls around my heart I was also shutting out God. I had plenty of moments of doubt. Not doubts of His existence but doubt that He would heal my son. I've never blamed God for Sam's cancer but I've blamed myself for asking God to do something radical with our lives, and that has caused me to retreat into myself and stop offering 100% to Him. Heck, I stopped offering even half of myself. I was like, "Hey here's this cancer thing... can you just take it and heal him and let us be?" I've always known that you have to take the sorrows along with the joys that life offers but in reality that can be a bitter pill to swallow.

I'm starting to ramble. I could write a book about this stuff if I kept going. This year I want myself and my family to grow deeper in our relationship with God, putting Him back as the focus. I pray that I can fully let go of the guilt and the blame and I will be a present, positive figure for my son. I hope that our joy outweighs our trials. I pray that 2012 is our best year yet and is the year that we hear that Sam is cancer free.

Our Week in iPhone Photos (12/26-1/1/12)

2012-01-01T21:55:00.000-05:00

Monday

His Christmas present is a big hit.

I went to the grocery and the bloodmobile was parked out front. What's a girl to do besides stop and give blood? Sam has had countless transfusions. Donating is so important.

Once inside I saw this. The Valentine's Day stuff was already set up across from the clearance Christmas stuff on December 26th.

Tuesday & Wednesday

I was in bed overtaken by the horrible stomach virus that has been going around so I didn't take a single picture. I took a nap with Sam on Tuesday afternoon and when we woke up I felt awful. I had to call Alex and tell him to come home from work to take care of Sam and I'm so thankful that his job is flexible. On Wednesday Sam spent the day with my mom and he had such a good time he didn't want to come home.

Thursday

This awesome late birthday gift showed up in the mail from Laura. Best mail of the year! I need to find a frame for it but it's an odd size.

I'll be shaving my head again this year as part of Team Keegan. More on that and the reason I'm smelling my (nasty TOMs smelly) foot in the above picture later this week.

Friday

Sam has hit the toddler bossy phase and wants things just so. He drags us to the playroom and orders us to sit in the tiny chair across from him. Thursday we discovered that he's content to just have someone across from him... even if that someone is a stuffed giraffe.

Here he was showing the giraffe letters or shapes or something. So cute.

Friday evening we went to my parents' house. My dad fell asleep on the couch but Sam was very insistant about showing him his rock collection.

Sam used to hate sleeping with blankets and would wake up if I placed one on him after he fell asleep. This week he decided that he now likes blankets and needs one pulled up to his chin in order to fall asleep.

Saturday

I found this note that I jotted down with two things to remember to add to my grocery list. I think it says "jelly" and "milk."

As soon as the kid was asleep I busted open the wine. Much better for ringing in the New Year than bubbly if you ask me. ;)

Sunday

A daddy bridge. Daddy bridges are better than Mommy bridges according to Sam.

Happy 2012, everyone! I'll have a 2011 recap for you tomorrow!

Merry Christmas!

2011-12-27T00:28:00.000-05:00

Christmas kind of sucked last year. At the time we thought it was okay, at least we weren't in the hospital. But looking back it won't be remembered as my favorite holiday ever.

Sam was on lockdown because he had just finished up his first transplant and was on a small break before the second. Everything was just on edge, you know? I don't think I was really there. When Sam was immunocompromised we were always just waiting on the other foot to drop. A hospital bag packed and one foot out the door for when he spiked another fever. We agreed that a few people could come to our home for quick visits as long as they were well. And I remember being angry that someone had posted on facebook about being sick, then showed up sneezing and coughing anyway even though we were explicitly clear that a cold could very well be life threatening at that point. We were lucky, but it was just so stressful. Even if I tried not to show it on the outside.

But this year was so different. We just had the normal stresses that the holidays bring and compared to the cancer stress those are a piece of cake.

We spent Christmas morning as just our little family unit. I ended up wrapping every little thing in Sam's stocking just so he'd have some paper to rip. I'm glad that I did because it drew the process out a bit. Plus I think it was more fun for him.

When he walked into the living room he immediately parked himself at his new table and camped out there for the rest of the morning.

The presents under the tree are the ones that wouldn't fit back in his stocking once I wrapped them. He got two gifts from us and Santa filled his stocking with trains and little things. We had planned on giving him three gifts but he was totally satisfied with what he got. He probably would've been satisfied with anything.

...Except floss. If he had only gotten floss he probably would've been disappointed.

We spent the morning playing with the new toys, forced the kid to nap, then headed to Alex's grandparents' house to celebrate with his side of the family. Just like on Christmas eve I completely forgot to take my real camera to any festivities and I didn't really take any pictures with my phone. But at least we were there and present and making memories. From Alex's grandparents' we headed to my parents' to catch the tail end of the gathering with my extended family.

I'm so thankful that we got to see everyone and actually enjoy our time together this year. I hope that you and your family have had a wonderful holiday season filled with peace, love, and happiness.

Christmas Eve

2011-12-24T22:04:00.001-05:00

We spent the day celebrating with my parents and my brother and his family. I was sad that my sister and her family couldn't be there but we had a wonderful time anyway.

Cousin Will. :)

Helping make Oreo truffles.

Alex polishing off a pan of sausage balls.

I feel like all we did all day was eat and cook and laugh.
I'm so happy to be enjoying such a "normal" holiday season.

Friday

2011-12-23T22:59:00.001-05:00

Alex had a noon meeting. Afterward we met someone to sell something Alex had sold on craigslist for work and also to pick up a Christmas gift for me. :)

The kid slept.

Then we went to a late lunch and even though Sam didn't sit quietly with his hands folded in his lap while we waited for our food, he wasn't loud and obnoxious either. He whined a little bit when we first got there because he had just woken up but he settled quickly. He was playing with his trains on the table and I overheard a woman at the table near us (we were seated in a section in the back with only one other party) say, "He is so noisy. I never let my kids behave that way in a restaurant."

What the what?!

You just woke the mama-bear! Chick you're at O'CHARLEY'S. Get over yourself.

Once our food came I could't really enjoy it. I wolfed down my burger, asked for a few to-go boxes, and took Sam out to the car while Alex paid, resisting the urge to glare at that woman. So... no picture of that ordeal.

Tonight I got all of our gifts bagged up and ready for Christmas but I can't share those pictures until after they've been handed out. :) I can't believe that tomorrow is Christmas Eve!

Thursday

2011-12-22T22:59:00.000-05:00

Alex and Sam spent the day together while I went out and picked up Alex's Christmas gifts. We weren't planning on doing anything for each other and haven't really in the past few years. But this year we decided to just do stocking stuffers for each other. Alex is hard to buy for so I wound up going to 4 different stores to get a few very specific items.

It was rainy and gross and I hate this place.

I like this place a lot better, but it was actually worse than Wal Mart today. It was packed and the line for the registers was ridiculous.

Needless to say the boys had a great time together, though.

Wednesday

2011-12-21T21:08:00.000-05:00

He moves his fingers around like he's playing but always plays it upside down. :)

Tuesday

2011-12-20T23:16:00.002-05:00

We did some more Christmas crafts this morning but Sam deleted the pictures I took. In their place I found some that he took...

Oh, those little toes.

He even added a filter with this one. Yep, that's our toilet and the tile in the bathroom.

Joe, Devin, and Zander dropped off our stockings. Since Sam was born so close to the holidays we didn't bother putting up decorations or doing much for his first Christmas. Last year was transplant time. So this is the first year I've really been into it all since he was born. I got these stockings for $3 a piece at the Dollar General and Devin's mom embroidered our names on them. Love.

I almost wrote that this was a picture from our "late-night" peppermint milkshake run. But then I remembered that 8:00 pm isn't really "late" night. But it is past Sam's usual bedtime. Rebels!

Monday

2011-12-19T23:18:00.000-05:00

With Christmas on Sunday (how is it already here?!) I figured I'll have a ton of Christmas photos to share, so instead of my weekly iPhoto wrap-up on Sunday evening I'm going to share as we go this week! So yay!

We spent the morning working on our chores.

Then we made awesome reindeer ornaments

Then Sam and I spent the evening at my parents' house while Alex worked late. We put Sam to work painting his own Christmas present.

Our Week in iPhone Photos (12/12-12/18/11)

2011-12-18T21:43:00.000-05:00

Today was actually a pretty busy week but I feel like I failed to take pictures of some of the best parts, especially toward the end of the week. Like getting to visit Joe and Devin's sweet new baby Zander TWICE! (Hellooo, baby fever!) Or making Oreo balls and caramels. But I always kind of feel like my life is a little too boring for these posts, but oh well... Imma keep doin' 'em!

Monday:

A straw and a smidge of water in a glass kept the boy occupied while I cleaned the kitchen.

Jumping on the bed is his new favorite thing to do. That and watching the video on my phone of himself jumping on the bed.

He is suddenly cool with letting me paint his hands! We've done some awesome Christmas handprint paintings!

Tuesday:

He was so good during our trip to Target and then to Wal Mart to make a return that when he begged for chicky I had to get him some White Castle chicken rings. He absolutely loves them and I'm not even ashamed. Plus he was pretty upset that we were returning the sweet Thomas table that he got for his birthday from his friend Ben. (We had already gotten him an Ikea table for Christmas.)

Puppet time with his puppets from Heart Felt Crafts. He has an Old MacDonald set that he just adores. We always keep at least one of the puppets in the diaper bag for an emergency distraction tool.

Tuesday night we went to Jack Fry's with Alex's boss and his wife for the company Christmas dinner. Good food, good wine, great company. It was so nice to have an adults-only double-date.

Then I came home and took a picture of my hair. Ha!

Wednesday:

I woke up to this little goober. He stole daddy's glasses off of the night stand. Who wouldn't want to wake up to that face?

Nativity characters being transported in the froggy potty. (Note: I don't really like this potty. It's really difficult for him to get off and on. I really want to get him one of these because he wants to stand up to pee but the stool next to the toilet makes me nervous. But $24?! I'm cheap.)

He insisted that this blanket was my hat and wouldn't let me take it off of my head. Ha! I just noticed his hand down my shirt. Also... duck face.

He was super clingy and whiney all morning so I thought maybe making some more salt dough ornaments would be a nice distraction. It worked for a while.

He took this picture of me rolling out the dough.

Thursday:

Crayola window markers. This is the only picture I took on Thursday.

Friday:

Alex got all of his hours in before Friday so he enjoyed a three day weekend. Friday morning we made bacon and eggs. Sam helped.

Saturday:

Someone stole daddy's seat.

Saturday night the youth at our church held a "Parent's Night Out" fundraiser for the Chupp family where they offered childcare from 5:00 pm to 9:00 pm for just $12.00. We wound up having a pretty good turn out and raised over $400 for the Chupps!

Sunday:

Christmas at the Coomers! We celebrated Christmas with my dad's side of the family. This is the only picture I took the entire time. Sam was showing Rachel the iPad. He loves her.

He took a picture of his feet on the way home.

It was a great week and I'm so looking forward Christmas! It's hard to believe that it's already here. I need to get to work painting and putting together his table, though. Hopefully I won't go a full week between posts again, though!

Our Week in iPhone Photos (12/5-12/11/11)

2011-12-11T21:39:00.000-05:00

Hey, y'all! First let me update the non-facebookers on Sam's CT and MIBG scans. There was no change. They're still "stable." Praise God! Stable is good but geez I really want some clean scans. Maybe that's selfish.

Second... if you're local and looking for some childcare for a date night or to get some Christmas shopping done, on Saturday the 17th the youth at our church is offering childcare for $12 per child. All proceeds will go to the Chupp family. There will be a movie, crafts, and snacks. All ages are welcome, but please try to RSVP by Wednesday so we can make sure we have plenty of volunteers. If you're interested, please email me (cassiesartin@gmail.com) ASAP and I can get you the details! (And yep.. I'll be there helping watch the kiddos!)

Alright... on to the photos!

Monday:

The dentist's office has a train table. Sam approves.

Tuesday:

Not happy about getting his EKG.

Wednesday:

Cool dudes waiting for scans.

Getting his fingernails and toenails clipped while he's asleep.

Thursday:

Fixin' the bedhead.

What?! Isn't this how you watch the Wiggles?

Friday:

Melting some wax.

Most awesome ornament ever. Alex in '92.

Saturday:

He likes his cowboy hat down over his eyes. That's how the cool cowboys wear it. If we try to tilt it back he pushes it back down.

"Preeetty."

Sunday:

Where we keep the kazoos now, apparently.

Making gingerbread cookies.

Eating gingerbread cookies. :)

Generation "i"

2011-12-08T10:08:00.000-05:00

I might need to hide some of the technology in this house. I know I've written about Sam and technology here before but he's super into it these days.

He has loved playing with my iPhone since I got it and it's amazing to watch him with it... unlocking it and navigating to whatever app he wants, then expertly working it. He goes through phases with different apps.

At one point he would open up Talking Tom first thing in the morning and then carry set the phone next to wherever he was playing like he was his best friend. Yesterday at the hospital he had Tom open on both of our phones AND the iPad at the same time.

For a whole week the first word out of his mouth when he woke up was, "Pone?!" For a while he was really into the matching game in I See Ewe. He got so good at it that we had to disable the "preview" feature to make it a little more challenging for him.

The other day he was playing abc PocketPhonics on my phone while listening to NPR on the iPad.

He's crazy good at Fruit Ninja except for that he loves to slice the bombs. And he loves growing letters in Scout's ABC Garden.

After breakfast he wanted to watch "Wock-it" aka Rocket aka Little Einsteins.

Cats playing piano, lots of books, animal sounds... At least not all of it is mindless, right? But when you briefly wish that you could afford to get you TWO YEAR OLD an iPod touch for Christmas so that maybe he might leave your phone alone? Both of you might need an intervention.

Wordless Wednesday: Awesome Bedhead Edition

2011-12-07T22:51:00.000-05:00

Our Week in iPhone Photos (11/28-12/4/11)

2011-12-04T21:01:00.007-05:00

I feel like there are a billion more pictures this week than usual. Brace yourself.

Monday

Happy Feet 2 (Thanks for the giftcard, Barbie!)

He did great but didn't make it to the end without wanting to climb up and down the steps. So we didn't get to figure out how those penguins made it our of that big hole!

Makin' Brownies with Dad.

Tuesday

Happy at clinic before having to get poked for labs.

Happy after getting poked. It only took 2 suckers and playing with some trains.

Experimenting with stamps for salt dough ornaments. I didn't go with any of these designs. ;)

Wednesday

Ho Ho Ho Snow globe.

Tickling his neck with the Christmas tree.

Thursday

Needin' a haircut!

Lunch with Dad.

We went shopping for a birthday gift for a party we attended on Saturday. Sam hung out and visited the Thomas toys with Alex while I shopped... then pushed this baby doll stroller all the way through the store.

Painting ornaments. :)

Friday

I guess everyone is getting Cheerios for Christmas.

Waking up happy.

They bribed him with FOUR suckers during his opthalmology appointment. His eyes looked normal but we hope tomorrows dentist appointment goes as well. :\

OMGCOFFEEEE!

Saturday

Santa without Sam.

Getting ready to leave for Ella's party. He insisted on TWO hats.

Sunday

Playing Fruit Ninja like a champ.

He just discovered this app today and already knows how to work it.

Bath time anatomy. "Wash your neck."

We've got a busy schedule this week...

Monday: Dentist

Tuesday: Echo, EKG, MIBG injection

Wednesday: MIBG, CT scan

Thursday: 2nd MIBG scan

Please pray for a smooth week. Pray that my scanxiety will be kept in check. Pray that Sam will be comfortable and not scared at all. He's starting to show some more fear in clinical situations. And most importantly pray for great results. Pray that the accutane is continuing to kill whatever is left. Send all the clean scan prayers, thoughts, and vibes that you've got. While you're at it send some of that to my friend Shannon who happens to have scans on the same days as Sam. We're hoping it's a lucky sign that they're both scheduled this week. I'll keep you posted.

Santa! I know him! (And He's Terrifying.)

2011-12-03T11:50:00.004-05:00

Every kid needs a "crying on Santa's lap" picture.

You have no idea how awesome these pictures are to me.

Santa tried to bribe him with a sucker. Never take candy from strangers, kid.

"WHYYY?!"

Too Big

2011-12-02T11:39:00.002-05:00

A few weeks ago Sam decided that he was too big to sit in a high chair anymore. Now he sits on the bench at the table like a big kid.

Not too long ago he decided that he was too big to let his momma pick out what he eats for lunch. (Or what color plate or cup or type of drink.) Today I wasn't thinking and fixed a lunch that he promptly refused and then requested "chicky nuggets."

Apparently today he decided that he's too big for a toddler fork. Or to... you know... use his fingers. (Which I'm okay with because it means I don't have to wipe his fingers between bites.)

He still needs a little help with the stabbing of the food. ;)

Our Week in iPhone Photos (11/21-11/27/11)

2011-11-27T20:55:00.004-05:00

Monday

I got to babysit my nephew Will for a little bit. I love that Sam has a cousin so close in age. It doesn't take long for these boys to make a mess, though.

We were running a little past nap time before my brother and his wife got back. Sam was asleep before we even got out of their neighborhood.

Tuesday

He got this little track with a motorized Thomas and Toby for his birthday. He LOVES it. So much so that Toby's batteries have already died. Those trains are LOUD and are currently taking a little nap in Tidmouth Sheds aka the closet.

Wednesday

Outside lights going up! Fodder and pumpkins coming down.

Thursday

Thanksgiving breakfast with my family. The boys enjoyed a game of monopoly.

I tried to snap a family pic before Sam went to bed. Happy Thanksgiving!

Friday

The birthday boy helped decorate the tree. Diaperless of course.

Saturday

Don't you eat dinner naked?

Sunday

Sam was bright-eyed and bushy-tailed at 5:30 am asking to play trains. Such a morning calls for coffee in a festive snowman mug.

Since he woke so early he took a nap at 9:00, then again at 4:00. He usually takes one nap right after lunch. The late nap only kept him up about an hour later than usual, though.

Sam Turns Two

2011-11-25T06:00:00.002-05:00

Two. How did this happen? I know it sounds totally cliche but it really seems like only yesterday we were celebrating Sam's first birthday. But it might sound a little strange that his actual birth day feels like it was ages ago. It's hard not to classify time as "before diagnosis" and "after diagnosis" and Sam's time on earth before diagnosis was pretty short.

I found it difficult to sift through pictures of the last year to use for this post. At the time I thought he looked so good. Not like a cancer kid at all... just bald. But I was wrong. The sickness was so obvious. And I can't spend too much time looking at the past because it makes me fearful of the future. I can't watch him go through that again... not after he's had a taste of what it means to be "normal." Not as a kid who is more aware. The thought of a future with dressing changes and puke buckets and holding him down for painful and scary procedures makes it difficult to breathe.
But this? This is now. There is no time like the present. And I presently have a happy, central-line and feeding tube free, wild and crazy two year old. A two year old.

I hate neuroblastoma but I am so happy for the perspective that it has given me on life. In the seemingly mundane moments of our day I stop and try to soak it in.

"Remember this," I urge myself. I stroke his silky hair or I try to smooth the bedhead for the 10th time in a day. I place my hand on his back and try to memorize the feel of his skin. I kiss his soft cheek, warm from sleep or chilled after coming inside on a crisp, windy day. I smell his delicious neck.

Remember this. I watch his smile beam as I toss him up into the air. I hear his true laugh as I tickle his ribs and kiss his chin. I squeeze him tight as he tries to run away, too busy to cuddle. I watch him splash in the tub and I feel his slippery skin on mine as I try to rinse his hair.

Remember this. His bravery and curiosity grow each day. He hops down the porch steps. He leads us around by the hand or by pointing, "Dat way!" He keeps his distance when he doesn't want his diaper changed. He delights in the choice between a green plate or a pink plate. His world expands along with his vocabulary and his taste for new foods.

Remember this. He takes care in picking out his pajamas, letting his tiny double-jointed finger hover over the choices before declaring, "Dat one!" He loves brushing his teeth but hates letting momma do the real brushing. We kneel by his bed to say our goodnight prayers. He hugs and kisses his daddy and waves as he jabbers, "Nigh-Night da-ee. I go nigh-night." I feel his breathing slow to a steady relaxing rhythm as we lay in the dark and I nurse him to sleep.

My dearest Sammy, you have changed my world in the most beautiful way.

I love you more than life.

Birthday party photos by MommaKT

Thankful.

2011-11-23T11:15:00.006-05:00

We praise God, today and everyday, for the many blessings we receive. We are so lucky. We are so blessed.

Last Thanksgiving
11/25/10

Sam's birthday. The third day in the hospital for his first stem cell transplant. The day that he felt the cruddiest of all during his entire first transplant admission.

This Thanksgiving
11/24/11

"Oh give thanks to the Lord, for her is good; his steadfast love endures forever!" -1 Chronicles 16:34

Our Week in iPhone Photos (11/14-11/20/11)

2011-11-20T21:02:00.002-05:00

Monday

It was just me and the boy. Alex was working out of town.

Sam enjoyed just sitting in the jumper like a fort or a playhouse. He also jumped enough to work up a sweat.

We found this strange brown ball with our ball pit palls.

What? This isn't how you wear your cowboy hat?

Tuesday

Eating an all-natural organic homemade poptart. Just kidding. It's a regular poptart. ::hangs head in shame::

We braved the rain and went to Hobby Lobby and Factory Card Outlet to pick up a few more little things for his party. That earned us some drinks from Steak n Shake. I keep bendy straws in the diaper bag just for these little occasions. :) Then we stopped on the way home to visit my mom at work. And on the way home from there we stopped to visit my Nanny and Papaw. Shew! Lots of stops on a rainy day.

Wednesday

Gettin' into mischief.

Takin' up the whole dang bed.

After he was in bed I noticed his little cars and trains everywhere. There was even a trail through my bedroom. You should hear the awesome "wee-woo!" sound effects that he does with the ambulance and police car.

Thursday

I got up bright and early and battled the traffic to do a couple of interviews for the Children's Miracle Network radiothon to benefit Kosair Children's Hospital. I had to get a picture with my favorite morning show team.

It was a good mail day. We got his adorable Thanksgiving shirt from Laura and this awesome cooking set from Ms. Erika. He's been cooking us up lots of imaginary food.

Alex and I cranked out four batches of this homemade playdoh during nap time. We used up all of our food coloring to get The Wiggles' colors. I was lucky that Alex got most of his hours in for the work week being out of town Monday and Tuesday so he was able to help me get a lot of birthday prep done.

Friday

Midnight showing of Breaking Dawn with Rick, Lauren, Shane and his fiancé.

Helping with the props for the birthday party photo booth.

Baking for the party.

Prepping the favor bags. Homemade playdoh, bubbles with custom labels, kazoos, mini maracas, crazy straws, and a little bit of candy.

Saturday

Party Day! Can you believe I didn't take a single picture? I hired a sweet friend to take pictures of the party and I am so glad that I did. I didn't have to stress at all about trying to host and take pictures at the same time... and the photos turned out way better than anything I would've taken myself. If you're Sam's Fan on facebook you can see a little preview. Otherwise, I'll be sharing some of my favorites as soon as I get the disc from her. :) But the party was magical. I can't wait for his actual birthday on Friday.

Sunday

He woke up and said, "Wow!" when he saw all of his gifts. (The ones I didn't hide in the closet for later.) He spent the entire day enjoying the spoils from his party. Thank you so much to everyone who came and celebrated and made his party day so special.

Aaaand of course... acting goofy while Dad watches football. :)

I hope everyone has had a great weekend and has a wonderful Thanksgiving week! Hopefully I'll be posting more this week about Thanksgiving and of course Sam's birthday!

Details

2011-11-16T19:58:00.003-05:00

I got some of the little details for Sam's birthday party done today. Alex designed these awesome labels for the bubble favors.

He also made water bottle labels and printed out the letters for me to use for the banner I'm making. I have to say that I feel super guilty for having plastic water bottles at the party. But I was already drowning in guilt from the paper plates and cups so why not pile on a little more. Yep. EF guilt. :P (Hey... if you got an invitation to Sam's party and haven't let me know for sure if you're coming or not... please do that!)

Tomorrow morning I'll be sharing our story as part of a radiothon fundraiser for Kosair Children's Hospital. Say some prayers and wish me luck that I don't sound like a goober and stumble over my words. "Ddeeerrr... what was my kid's name again?"

Our Week in iPhone Photos (11/7-11/13/11)

2011-11-13T21:40:00.004-05:00

Once again I don't really know what days these are from. And I haven't been consistently taking photos each day because the camera issues can be kind of frustrating. Oh, well... at least you get some pictures. ;)

Washing his hands. He really needs one of these. Even with the stool he can't reach the faucet.

Making homemade playdoh.

Squishy.

Working on props for the photo booth props.

Tissue paper pom poms.

We got this jumpolene thingy to use as a ball bit for Sam's birthday party. Of course we had to go ahead and inflate it in the play room. I had planned on just getting two super cheap $5 baby pools to use, but I couldn't get site to store shipping on any of them since it's November. By the time I paid for shipping it would have been just as much as this awesome thing. Plus he LOVES it.

Except our whole house smells like plastic. Ick. That can't be good.

My mom watched the kiddo on Saturday night so I got to go see Alex's band play.

They sounded great. Afterward we went for pizza and to listen to another friend's awesome band.

Today was busy. Alex had church. (I've pulled Sam back out since he's had a runny nose for 2 weeks. Plus accutane can suppress counts, and it was just making me too nervous to even concentrate on the sermon.) Then I went to my friend Devin's baby shower.

Straight from there I picked up the boys and we went to Sam's pal Ben's birthday party. (Sam and Ben were due 3 days apart but Ben came early and Sam came late so they were born about about 3 weeks apart.) Anyway... busy but good Sunday.

And just as a bonus... here are a couple of videos from Saturday.

Jumping. LOVE how he gets out of this thing. Usually he just dives out face first but he decided to go backward.

Bowling. He was doing great before I started filming... then he couldn't knock down a pin to save his life.

Wordless Wednesday: Super Sam

2011-11-09T11:55:00.003-05:00

Cape by Kiss the Toad Creations. Go HERE to sponsor a cape for a kid with cancer!

Our Week in iPhone Photos (10/31-11/6/11)

2011-11-02T21:53:00.005-04:00

My phone is kind of messed up. Apparently it has water damage. That could be from the two times I've dropped it in the sink. Or from that one time my kid threw up on it.

Anyway. It means my photos show up all duplicate and blank and funky on my phone and I can't upload them to facebook or instagram or message them to my parents. I can take photos while in an app and they'll show up like normal but when he's doing something cute I always just think, "Hey! I should take a picture!" Not, "Hey! I should open up facebook and then decide if I want to share a photo on my personal page or Sam's page and then take a picture."

So that means less social media photo upload instant gratification for now. They could swap it out at the Apple store for me. 150 dolla no holla. Or I could file and insurance claim and pay a $170 deductible. Umm... why do we pay for insurance on this thing again? But I'm eligible to upgrade in January so I'll probably hold out on a new phone until then.

Blah, blah, blah... are you still here? I can still import photos to my computer and upload them. However... I really have no idea what day any of these were taken. I can't even really remember what we did this week. What happened to my brain?

So here are some random photos from the week! I think they're at least in order. Not that that matters. Enjoy!

Cooking.

Distracted by Thomas stickers while I address birthday party invitations.

"Microwaving" Alex's Kit Kat wrappers. (Yes, I know they're Alex's because Sam doesn't eat them and he didn't save any for me.)

Notice that you can't see his feet. He's trying to stand up in there.

Crazy boys.

He hasn't had much of an appetite because he's still really snotty. But he has insisted on wearing his cowboy hat for meals this week.

A musical book about Woody and Jessie.

Watching Cars for the first time. I had forgotten how cute that movie is.

Sam Wiggle

2011-10-31T22:31:00.005-04:00

Happy Halloween!

(That's Sam's Halloween shirt from last year. Still fits.)

This was the first year that Sam got to trick-or-treat! He was really too little last year and we were gearing up for transplant... but this year was a blast!

He was Sam Wiggle. Easiest. Costume. Ever. We just got a long sleeved yellow shirt and black pants at target. Printed the Wiggles logo on some iron-on transfer paper and, well, ironed it on and ta-da! Sam Wiggle.
We ToT-ed at our grandparents' houses before heading to the Trick or Treat on Main Street event a few miles down the road in the city where Alex's boss works and my parents live.

We had a great time collecting treats and visiting with the Tichenors. Then we finished up the night visiting my parents. By the time we made it to their house Sam was all jacked up on sugar and literally spinning in circles. He was hilarious. :) When we got home he was extra upset about brushing his teeth ready to crash. It was a good day.

Our Week in iPhone Photos (10/24-10/29/11)

2011-10-29T21:48:00.004-04:00

Monday

Hotel bed hog.

Tuesday

Boys and their technology.

Why is this place SO HUGE?!

Wednesday

My iPhone camera has actually been really funky and ALL of my pictures from Wednesday disappeared.

Thursday

Clinic. He kept backing up into the paper because it tickled his neck.

Friday

We both started feeling under the weather. We stayed in our PJs and watched movies.

Sam got all of the toilet paper out of the closet and decided that this was where it needed to be, apparently.

Saturday

Spent most of the day in our PJs again...

He wanted to eat dinner in his cowboy hat.

And then I decided that I needed to get out of the house for a little bit so we went to visit my mom. I carved a pumpkin. :)

Back Home and Back to Reality

2011-10-27T11:33:00.002-04:00

Sam had a follow up with the radiation doc the day after we returned from SC. Everything is still okay from his standpoint... Sam is growing and hitting milestones. He got to pick a toy from the toy chest and he got a little tractor. He also picked a rock from the parking lot. Weirdo.

We had clinic this morning. After the tumor board discussed Sam they said that the PET scan results are good but that we still need to watch him very closely and repeat scans sooner rather than later. He will have a repeat CT and MIBG in about 5 weeks. I really don't know what another MIBG is going to do other than stress me out. Part of me wishes that they would biopsy them again just so that we could know for certain what we're dealing with, but I'm not sure how possible/invasive that would be.

Dr. Cheerva is also considering putting him back on accutane for a while to help those spots continue to mature into ganglioneuromas. She is talking to a few more people and said she'll hopefully have a decision on that by tomorrow. We should be able to avoid a feeding tube by busting it up and mixing it with something to give orally. And it's possible that he's at the point that I may be able to get him to swallow the pill. I know he's capable... I've seen him swallow gummies whole. But we'll cross that bridge when we come to it.

Continued prayers are appreciated! Just wanted to give you guys an update. :) I'm off to get my butt in gear and start planning Sam's birthday party!

A Big Ol' Update

2011-10-24T21:54:00.006-04:00

First off... in case you haven't heard... we got the result of Sam's PET scan super quickly. "No evidence of active disease!" How amazing is that? Pretty darn amazing. Praise the Lord!

It was an ORDEAL to get an IV in him for the scan. Three hours. FINALLY they called anesthesia and the fabulous, wonderful, amazing Ashley, who we had during radiation and we absolutely adore, came and gave him some goofy juice and then got an IV in his foot right away.

We weren't expecting to get results until Dr. Cheerva was back in the office on Tuesday, but I had asked the tech when it would be read and he said that it would be read immediately and at the very least they always read them before they leave for the day. So I called our nurse practitioner and told her to work on getting results for me ASAP. She called me before we were even out of Louisville and said, "Cassie. I think you need to celebrate!"

We were elated.

We left immediately from the PET scan and drove to South Carolina to visit friends and I don't quite think that the results have sunk in yet. I got a bit emotional during worship at Journey Church but I haven't had a big release. It's comin'. It might wait until I get the physical report in my hands, though.

Shew. How fantastic.

So, SC has been amazing. I love this place. I love the people here. My parents are slightly terrified that we're going to move here. I always cry when we have to leave. It sounds totally lame but I just can't explain this pull that I feel to be here.

(If you guys don't want these pictures on here just tell me and I'll take 'em down.) ;)

I forgot my real camera so all I have are crappy iPhone pictures. And these are super poor quality so I apologize. Another disclaimer: I left all of my hair product at home and looked a hot mess the entire trip.

We made pretty good time on the way down here. We left from Louisville around 3:00 and arrived around 1:00. Sam did fantastic in the car and fell asleep right around bed time. Here he is on one of the two pit stops we made.
Our wonderful friends the Jernigans allowed us to stay in their lovely home. They were off enjoying a Disney vacation and we had the place to ourselves until Sunday. Sam immediately made himself right at home with Harper's train table.
Saturday was our 6 year anniversary. What a great way to celebrate! Fantastic news and great friends.
We went to a corn maze that evening. We didn't actually attempt the maze but the kiddos had a good time playing in a huge pit of corn and checking out the animals. Here Sam and Wesley were playing the the water meant to wash your hands after feeding/petting the animals.
Sam went on his first hay ride and loved it! The kids were cracking me up with their crazy laughing the entire time.
After church on Sunday night we returned to the Jernigan's home. They must have been exhausted by their trip back from Florida but they had dinner ready for us. (They're seriously wonderful, selfless people.) The Polks came too and Sam and Ivalee had fun with the iPad.
On Monday morning we spent some time with our friend Phil and we all went to lunch where we ran into some other awesome people that we had already said our goodbyes to! Bonus!

Myself and the amazing Rita Polk.
Yes, our kids were stripped down to their diapers at McAlister's. They both got choked up and got sick on their clothes.
Rita's sister, Mendy, happened to be in town at the same time as us so we finally got to meet in person. I was excited. (And she was one of the bonus people we got to have lunch with today.)
After lunch we drove about 2 hours to meet my internet (and now real-life) friend Laura and her family. Her son is just as cute in real life as he is in pictures and Laura is the best.

Tomorrow morning we'll head back home. Thank you all so much for your thought and prayers and encouragement. Our journey with this beast isn't over. We still have scans every three months and the relapse rate is high. But right now we remember to live in the moment and are celebrating and praising God for answered prayers. This might sound crazy to you but we also thank God for using this experience to bring us closer together and closer to Him.

And as we celebrate this victory in our battle, our hearts and minds weigh heavy on the Chupp Family as they face the one thing that nobody wants to face with their two year old... Hospice. When you start to complain or lose patience with your little one... stop, take a second to count your blessings, and say a prayer for this family.

(Not so) Wordless Wednesday

2011-10-19T23:15:00.003-04:00

I shared this picture with every social media outlet available today but I just can't help myself. Look at it. Look at the cute. He loved those things.

Sam's PET scan is scheduled for Friday morning at 9:45. We're praying that it's "cold." Think cold thoughts. Send cold vibes. Please God, let this scan be good news. Let us celebrate these results.

Update on the Liver Lesions

2011-10-17T16:24:00.002-04:00

I just got a call from Dr. Cheerva. She said that after discussing it with the radiologist and surgeon, the next step is to do a PET scan. If the PET scan is clear, then they'll feel more comfortable just waiting and watching. Otherwise the next step will probably be to try to try to biopsy them. Surgery to remove them is not an option, they're spread throughout the liver.

Something that has never really added up for me is that the biopsies of the liver lesions that they did during his big surgery came back negative for neuroblastoma... but they continued to show up on the MIBG scan. The hope is that they're just shrunken down, scarred-up, junk that have changed composition to something less menacing.

Please pray that the PET scan will be clear. I don't have a date or time for it yet, but I'll update as soon as I do!

Scan Results & Our Week in iPhone Photos (10/10-10/15)

2011-10-15T19:35:00.008-04:00

Monday

I bought this Thomas laptop at a consignment sale a few weeks ago and saved it for this week. It was a good distraction tool.

Finishing up his bone scan. The anesthesiologist said that he needed enough propofol for TWO adults.

Tuesday

I had planned on saving this cozy coupe for his birthday. It was a hand me down from a local Sam Fan. But I really wanted to take advantage of the nice weather and use it outside while we still can.

Wednesday

A new (used) Thomas train as treat for scans.

Calling the nurses.

Thursday

Wiping his nose, and a drive by popcorn station in the living room.

Friday

Trick or Treating the zoo. He puked on his cowboy costume (jeans, plaid shirt, and a bandana and hat we got for free at the Carnival of Life) so he went as a boy wearing a spare outfit.

When we walked up on the table selling these he gasped and did his big "surprised" face. Since admission to the zoo was free with our pass... we splurged on a $3 light-up piece of junk for him. :)

After the zoo we dropped him off at my parent's house and headed out on a date. I had some of these...

And listened to these guys. It was great to get a break and to finally meet these guys that Alex has been playing music with. They are super talented.

Saturday

It's kind of a rule in our house that if you want to buy something new that's not a necessity, you have to sell something to pay for it. So I sold my cricut to pay for this elliptical. Yes that's Sam's disassembled crib that needs to be stored away. *hint, hint, Alex*

So. Scans. I spoke with the nurse practitioner yesterday. Sam's scans are still stable. Everything looks the same. Which is good. BUT. Dr. Cheerva said that the fact that he has had everything and the spots on his liver are still lighting up on the MIBG (indicating active disease) makes her a little nervous. She is supposed to speak to our surgeon about the possibility of doing biopsies. We'll most likely find out more at our clinic visit on Tuesday.

Pray that Dr. Foley will have some good insights. We trust his judgement. And pray that if he decides to biopsy these spots that they will be negative so that we can all breathe a little easier. Keep praying for total healing here on earth. Because the world would just be a darker place without this in it...

Time Out

2011-10-11T22:00:00.003-04:00

We instituted time outs with Sam a few weeks ago. We've only needed to use it a few times. The first time was for deliberately hitting me in the head with the remote, immediately after petting my face and saying, "Eeeasy." (A wise friend told me that I would know when he was ready for time out... with that little act he was ready.) The other times have been for throwing toys. (He loves the sound his trains make when the slams them down on his train table.)

This morning he raised his arm to chuck a train and I stopped him with my best mom look and in my sternest mom voice I said, "Ahh!" (You know that sound. The Mom sound.) "We don't throw trains. If you throw that you'll go to time out."

A few minutes later I was in the kitchen and I heard him clanking his trains around back in his room. Then I heard his hurried little footsteps coming down the hall. I walked into the living room just as he was plopping himself down in the corner.

He put himself in "time ow." :)

Our Week in iPhone Photos (10/3-10/9/11)

2011-10-09T21:15:00.005-04:00

Monday

Supporting Jackson!

Tuesday

Zoo with just the two of us. :)

Visiting Dad at work.

Wednesday

Stuffing Diapers during nap time.

Thursday

This is how you do a diaper change on the go!

Alex took the day off. We went to Paint Spot to paint pottery, then took an impromptu trip to the zoo. (Where they had found my license that I lost there on Tuesday. Woot!)

Tuckered out from the morning's activities.

Friday

iPad

Ready to GO!

Saturday

I didn't take any pictures but we had a fun day at Alex's Granny and Aunt Charlene's joint birthday party.

Sunday

Big Day. Sam's first day back at church since diagnosis. He barely cried when I left him in his class and had a great time. We went to lunch to celebrate. Joy!

Letting it all hang out. (He will usually pee on the potty if he's naked!)

Painting pumpkins with his cousin William. Note the difference between the two. Sam hates getting messy. Will painted himself green! :)

Sam has scans all this week. Please pray for some amazing, miraculous results. I want to hear NED!

Wordless Wednesday

2011-10-05T21:55:00.006-04:00

aka a photo dump of today's activities...

He fell in the parking lot of my mom's work when we went to get pumpkins. Double scraped knees and a sucker.

He thought that watching himself make this face in the camera was hilarious...

First Haircut

2011-10-04T22:07:00.004-04:00

Sam reached a big milestone yesterday - first haircut! This is even more special for us since he was bald for so long. I always joked that when he got his hair back I would never cut it. He would be my long-haired hippy boy. But once it started sticking out over his ears and he sprouted the baby mullet, I decided he needed a trim.

I took him to my friend, Katie. One of the sweetest people I know, who also does my hair. I was kind of nervous that he would be terrified of the clippers so she tried to use scissors. We quickly learned that wasn't the best idea. He wouldn't sit in the chair. She tried sitting on the floor with him. He was running around like a mad man. And sharp objects near a wiggly toddler's face who was whipping his head around every time she touched him? Not a good idea.

So he sat in my lap and I prepared to hold him tight as he freaked out about the clippers. But I was worried for no reason! He sat still and I think he actually thought that it tickled. That'll teach me to expect the worst!

I failed to bring my camera... so you'll have to settle for some crappy iPhone pictures. See if you can tell the difference. (You can click on the pictures to enlarge them.)

Before

After

I don't know if it really comes through in the cruddy pictures but in person -- No more hobo baby! Yes! :)

Also.. a shout out to Jackson and his fam who are celebrating this weeks scan results. (We were all sporting our J Team shirts in support of him yesterday.) And I hope you'll pray for Keegan and Sam who have scans next week.

Our Week in iPhone Photos (9/26-10/1)

2011-10-01T21:11:00.007-04:00

I went to write a post and realized that it's been a week since my last update. I couldn't decide what to post about or which pictures to show you so I took a page out of Suzanne's playbook and decided to show you our week in iPhone pictures. I guess if I decide to make this a regular feature I should try to take some more exciting pictures and refrain from sharing every little thing on facebook. ;) Anyway...

Monday
I felt like I was in some kind of toddler twilight zone. Sam decided that he was going to spend lots of naked time and PEE ON THE POTTY. The first time he was just chillin', airing out his bottom, and he looked at me and said, "Pee pee? Potty?" and signed "potty." I took him to the bathroom and he went! The he went ahead and decided to do that again two more times that afternoon. He was diaperless (I at least put a shirt on him) most of the day with only one accident.

Tuesday
We had clinic. He was adorable and super well behaved. His counts looked fantastic and we don't have to go back until scans week. (The week of the 10th.)

When we got home we tried more naked time but he was no longer interested in using the potty. (That would have come in handy when we needed a urine sample at clinic.) I'm not going to push him so back in a diaper he went. And those shoes. :)

Wednesday
Happy Boy in the car.

He's been really into Alex's new band. We rock out on car rides.

Audiology appointment. He got out of the habit of wearing his aids so they turned them back down so that he can get used to them again. Now I just need to remember to put them in first thing in the morning and then be consistent about making him wear them.

Alex had church...

...which is tragic. OBVIOUSLY.

But everything is made better by a little time outside.

Thursday
Sam and I were both going a little stir crazy in the house. Alex had to leave work to go to church and test something out so we tagged along.

Then we went back to work with him for his last hour!

Friday
At least I think this was Friday morning. Music time.

He frequently goes into Alex's office and asks for the guitar.

LOTS of time outside waiting for Alex to get home from work and after he rolled in.

And even more time outside when we went to visit my parents and The Cousins. Sam and Will enjoyed chasing the cat.

Saturday
We drove to Bardstown to meet someone who bought our big nursery glider on craigslist. Then we had breakfast (waffles and bacon... mmm...) with Alex's parents. Home for a nap, then a trip to Target. Once we got home he didn't want to go inside so we played while Alex cooked dinner.

A Special Sunday

2011-09-25T20:20:00.006-04:00

Today was a busy Sunday. We went to the Carnival of Life, a celebration for patients and families put on by the Pediatric Hematology/Oncology docs and nurses. There were games, inflatables, music, karaoke, face painting, and lots of food and fun. It was nice to see some friends and some familiar faces outside of the clinic and hospital walls.

When we left there we headed straight to my parents' house to eat chili and celebrate my brother and brother-in-law's birthdays.

Sam and Aunt Ash..

With Uncle Bob...

We got home around 8:00 pm and gave Sam his last dose of accutane and then...
Notice anything different? No more NJ tube! For the first time since he was diagnosed, he has NO tubes in his body! Praise the Lord!

And just because I can...

Feeling so blessed today,

Still Spinnin'

2011-09-24T10:09:00.003-04:00

One of Sam's favorite things to do is spin these things from his Melissa & Doug tool set. This little activity has been going on for months and it can keep him occupied for so long. Sometimes he just walks around idly spinning one. Sometimes he gets a longer piece and tries to spin it toward himself without hitting himself in the face. Lately he's been working on spinning two at once. He's pretty good at it.

Hey... whatever makes you happy, kid.

I hope everyone has a great weekend! This is Sam's LAST weekend of accutane and we're taking his NJ tube out after the last dose on Sunday night! :)

lets all go to the movies

2011-09-20T21:58:00.003-04:00

Movies only cost five bucks on Tuesdays so we chose today to take Sam to see his first movie in the theater... The Lion King. :) He wouldn't have kept the glasses on, so we didn't see the 3D version.
It just so happens that The Lion King was the first movie that I ever saw in a theater. I remember that after the big opening song when the title popped up my cousin shouted, "It's OVER!"
Sam did pretty well considering that we were cutting it super close to nap time. I wish we had arrived a little late to avoid the previews because after sitting through the previews he only made it though about half of the movie. I'm still calling it a win, though.

Pumpkin Patch

2011-09-17T17:35:00.005-04:00

I took Sam to visit my momma at work today. She works at a garden center and they have their pumpkins out for sale, so I grabbed my camera in the hopes of getting a few cute fall pictures of Sam.

He is weird about walking on different surfaces and apparently he's not a fan of straw...

I did eventually get a couple of okay pictures out of him.

But, yeah...

A Day in the Life

2011-09-15T14:48:00.013-04:00

Inspired by Jill, I decided to document an entire day around here.

Thursday September 15, 2011

9:00 am

Sam woke me up by crawling on top of me to nurse. I tried to snap a picture with my phone but he snatched it from me. So I tried to grab one with my camera and he was like, "What the heck are you doing, woman?" :)

We wrestled around on the bed and played and giggled for a bit. I hid under the covers and asked for five more minutes of rest but like every other morning he got down from the bed and started pulling on my hand and saying, "Pull! Pull!" to get me up.

He played in his learning tower while I got his meds ready.

He dropped a stainless mixing bowl into the sink which was loud enough to set off the alarm.

I didn't get his NJ closed all the way and gross stuff leaked out on his shirt.

So I got him dressed and tried to distract him with trains so that I could take a shower. It didn't work.

So I tried to distract him with cereal and Thomas. It didn't work.

Finally he found a scrub brush in the hall closet and that kept him entertained for 2.5 seconds before he started beating on the bathroom door. After I got dressed he wanted to nurse and I accidentally let my hair dry like that.

TV off. Music on. He played in his learning tower while I tried to pick up the kitchen.

My favorite household item did my least favorite chore.

11:00 am
My sister in law is a nurse who works night shift. My mom was watching my nephew so my sister in law could sleep today... and she brought him over to hang out. My mom played with them in Sam's room. I finished up some chores before joining them.

Next up - Lunch. Sam had popcorn shrimp and stole some of my chips that I had with my turkey sandwich.

After lunch we watched some Sesame Street and the boys were generally cute.

Sam started getting tired, which meant he was getting sucked into Sesame Street.

The boys said their goodbyes. Will was asleep before they even got out of our driveway. Sam was knocked out a few minutes after they left.

2:30 pm
As he slept I finished up my chores. (I usedthe Motivated Moms iPhone app and I love it.) Then I did some internetting.

When he woke up we went outside to play. It was a beautiful day.

5:00
He "helped" me cook dinner. Don't worry he wasn't close enough to touch anything. And he knows better, anyway. Anytime something is cooking he keeps signing "hot." :)

Some post dinner SuperWhy! while I cleaned up the dinner mess...

After the kitchen was cleaned up we played for a while and he nursed again. Then he was ready for a bath.

After he was lotioned up and in his PJs we had some popcorn and watched a little Thomas before he conked out at 8:00. Usually we would read a few books before bed, Chicka Chicka Boom Boom is his current fave, but his nap was pretty short today so he was tired.

Alex finally got home around 9:30 from a super long day at work. Now he's watching the news as I type this and surf the web. What an exciting life we lead! :)

How was your day?

Zoo Trip

2011-09-13T17:09:00.004-04:00

Yesterday morning Alex and I slathered Sam up with sunscreen and took him to the zoo.

He really had a great time just walking around and checking out the new sights. We had to really point out the animals to him as he was just trying to take it all in. At one point he stood for like a minute signing "water" and pointing to the water before he noticed the big tiger in front of him. Then he started growling. (Side note: Did you know they feed the tigers horse meat? And that they get blood popsicles as a treat? Yum.)

He got to feed the ducks, which he loved. I recognize that we totally could have done that for free.

He liked the lorikeets, too. But they bit Alex hard enough on the neck and ear to draw blood.

Later that night I went to the pharmacy and came home to find my boys having an alphabet jam session.

Fun day.

Do Something

2011-09-09T11:04:00.002-04:00

Want to do something in honor of Childhood Cancer Awareness month? Donate blood!

Kids with cancer get countless blood and platelet transfusions during treatment. I wish I had kept a tally of how many transfusions Sam has had. The number might surprise you!

Go here and enter your zip code to find a blood drive in your area.

Something else you can do is join the national bone marrow registry - you can do it right from home. Visit bethematch.org to find out more. Alex and I are currently waiting on our kits.

If you can't do these maybe you could host a blood drive or donate funds here or here in honor of Sam!

Pinwheels and Mountains

2011-09-08T16:48:00.007-04:00

Sam had a clinic visit this morning so that they could check him over and make sure he's good to go for his LAST cycle of accutane to start on Monday. He will get two doses a day for fourteen days and then he will be officially finished with treatment!

This was his first clinic visit since his line was removed so they had to prick his finger to get blood. He cried, of course, but nothing overly dramatic. Afterward he got to pick a prize from the treasure chest and once he saw the awesome pinwheel he forgot all about the mean lady who stole his blood. ;)

(Note to self: Pick up awesome treasures from the dollar spot at Target to donate to the treasure chest.)

The visit really went quickly by clinic standards. (Actually I'd say today was quick by any doctor's office standards!) But they didn't have his accutane prescription ready and no one there was authorized to sign it. We had to walk over to the hospital to get it from Dr. C. which meant Sam got to visit with everyone... so no biggie.

He has gained some weight (woot!) and is now tipping the scales at almost 25 pounds, which means his accutane dose went up, and his counts looked good.

I've had the idea in my head that Sam will never get clean scans. That maybe he'll just be one of those kids who stays "stable." But last night my devotion focused on Matthew 21:21.

"And Jesus answered them, "Truly, I say to you, if you have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, 'Be taken up and thrown into the sea,' it will happen."

So obviously, I immediately prayed for magical mountain moving properties just so I could mess with people.

Seriously, though... in this verse Jesus is making a point about the disciples' (and my) lack of faith. Cancer is this huge mountain that we face. Why shouldn't I believe that Sam could have clean scans? What has God done to make me think that he couldn't? Absolutely nothing. God has moved so many other mountains and foothills (and molehills that I made into mountains!) along the way. How could I doubt this possibility?

Somehow I forgot to place it in His hands. Once again, like the fool that I am, I've been relying on myself to make it through. And once again I'm resolving to let go of the worry and the fear and have faith. Scans are scheduled for the week of October 10th. I hope you have been and will continue to pray for clean scans and a long cancer-free life for Sam.

_______________

If you would like to get some of Sam's original art and help spread hope to other kids with cancer for the Christmas season that is ~~creeping up on us~~ hurling toward us at warp speed, check out this auction on facebook being put on by Battle4aCure.

Is This Real Life?

2011-09-03T07:00:00.001-04:00

People have asked me a lot how I think I'll feel when it's "all over." For the record... it's not all over, even after we finish treatment. There is still residual disease, the relapse rate is high, and the potential for late-term effects looms. But my response has always been something like, "I think when I have time to take a moment, breathe, and reflect... I'll break down. I'll probably have PTSD or something."

And that's what I did last night. I broke down and really cried for the first time in a long time. Because this? The hell my child has endured for the majority of his life it real. It's real and it's not fair.

September is Childhood Cancer Awareness month. Last night I sat through looking a pictures and I'm aware. Oh, dear God, am I aware.

I follow a lot of childhood cancer foundations and personal pages of kids who are fighting on facebook. And I can. not. read about another kid dying. I just can't. I'm going to have to hide them all from my feed. It makes me sick.

When I wrote this post last September I thought I was a ranting, raving, lunatic. Re-reading it a year later I think I seem a lot nicer than I feel in this moment, writing this entry. Cancer pisses me off. And silly little games that claim to raise awareness and have NOTHING to do with cancer piss me off. Whoever decides how little funding pediatric cancer research receives pisses me off.

I'm honestly not angry with God. Most of the time I feel like I can cope with this journey God has sent us on. Our lives have been changed for the better, our family is stronger, I don't take one second with my child for granted, and the roots of my faith have grown deeper. But sometimes I think anger helps. Anger can spur change. It's not all bald heads and smiles and rainbows. And maybe if you enough people wake up, get a grip on the situation, get mad enough that so many kids are suffering and dying horrible, painful deaths... change will happen.

-Donate to curesearch.org

-Organize a walk/run/event

-Shave your head

-Volunteer at your local children's hospital

-Join the national bone marrow registry

-Pray For A Cure

Look out, world!

2011-08-29T23:10:00.004-04:00

We've been busy! Sam got to take a quick trip to the grocery with me to pick up a few items over the weekend. Alex has been working non-stop at the state fair... so he took today off to spend with us. This morning we drove out to his mom and dad's house to pick up our piano they've been storing for us. (It's going to live with my parents now until we move to a house with more room.) Then we had lunch at McAlister's. Sam didn't want to eat anything but the bacon off of Alex's sandwich, so they gave him a couple of pieces of bacon of his own. Then she came over and surprised him with Teddy Grahams. :)

This weekend was pretty fun. On Sunday Sam and I went to my niece's 13th birthday party. Sam had a great time and I got a little break from him as he attached himself to my sister in law. AND... she finally coaxed him into walking in the grass! He has always refused to even stand in grass, but I knew he was getting close to being ready because he was willing to touch it with his toe when we checked the mail the other day. This afternoon we stopped by the park so Sam could show off his grass-walking skills for Daddy in the shade. (We have ZERO shade at our house.)

With Sam's central line we only gave him sponge baths twice a week. He got really good one on the day we changed his dressing and one mid-week. Since he's been able to take a bath he's gotten one three nights in a row!
He even lets me dump water over his head. He hated if I let it drip in his eyes during sponge baths.
And it's a good thing, too, because with all of this new exciting stuff he totally smells like a foot that's been outside by the end of the day.

Good Days

2011-08-26T20:38:00.006-04:00

Holy cow. I hate to go so long without updating here. But between driving in to the hospital every day, coming home and completing all of my household chores, plus keeping up with Sam... by the time I get him in bed all I want to do is crash!

On Wednesday night when we flushed his central line, we noticed that there was still blood sitting in the tubing... the inner cannula cracked again. So we called the on call doc and were sent to the ER. Surgery said that it needed to come out, but it wasn't emergent so they sent us home. It was a surprisingly fast visit. After talking with Dr. C at clinic on Thursday morning we decided even though the plan was to leave it in until after scans that we would just take it out and leave it out. He's not getting any meds through it and only requires blood draws every two weeks... and even that will space out. So this morning in a quick, 15 minute procedure, his central line was removed!

They were running like an hour or more behind... but he waited so patiently.

We both napped for several hours once we got home and he woke up starving.

Then we put macaroni into a Gatorade bottle. (Again and again and again.)

It feels so weird to not have this thing hanging out of him. Since he was diagnosed so young, it's just been a part of him practically his entire life. Tonight I actually walked back to his room to get supplies to flush it before remembering... oh yeah! No more flushes. No more dressing changes. No more cap changes. No more home health deliveries. He can take a bath as early as tomorrow. A real bath. Sam has never had real bath in the bathtub.

We also got his CD-4 result back on Thursday morning and Sam is now free to resume normal activity. That means that though we still have to be very cautious of the sun until he finishes the accutane, we can take him in public! I'm actually a little nervous. I'm really really freaked out about taking him to church and leaving him in the nursery. We've been inside our tiny little bubble, our comfort zone at home, and suddenly we can start pushing beyond those invisible boundaries.

These are good developments, and don't get me wrong, I'm ecstatic about them. But it kind of feels like we're losing our safety net. It's hard to describe and maybe it's hard to understand unless you've been there. Plus, I still feel like the rug could be swept out from under us at any second. But I try not to dwell on these feelings, focus on the good, and step out of my comfort zone because I should and it's healthy. And there is so much out there that I can't wait for my kid to experience.

Pray for easy adjustments to the real world and to pokey blood draws. And pray for clean scans in October!

Oh, Hi Blog People!

2011-08-14T21:08:00.003-04:00

I didn't forget you! Well... I kind of forgot to tell you that we got to come home from the hospital on Friday! Despite the swelling and hives and a few fevers here and there, Sam did pretty well last week. We are very happy to be done with that part of the therapy and looking forward to the end of treatment. End of Treatment Party, anyone?

Anyway... you'll have to forgive me for forgetting to inform you of our discharge. But in my defense, when you still have to drive back in every morning and spend several hours getting GM-CSF, it doesn't really feel like you ever left. Luckily the last day we have to do that is on Thursday. Maybe after that we'll only be seen in clinic. We're unsure how frequent our visits will have to be at first. We know that he will continue to be scanned every three months. (October 1 is when scans will be due.) I just keep praying that we can move forward smoothly, hopefully get some clean scans, and put all of this (mostly) in the rear-view.

Aside from being a little extra cranky and clingy Sam is doing well at home. We had hardwood floors installed in our kitchen and living room while we were in the hospital and he enjoys stomping around on them and seeing how far he can make stuff roll.

Oh... and someone destroyed our silverware drawer.
That's all I got.

♥♥♥

Hospital Update

2011-08-09T20:19:00.005-04:00

We are almost halfway done with the antibody for this last. scheduled. admission. I keep bringing that up and telling everyone... this is our last scheduled admission. When staff members ask, "This is your last one, right?" I cheerfully say, "Yep! Last scheduled admission!" I always add the "scheduled" in there because we have no idea what the future holds. I hope that after this, Sam is done. Like done done with cancer, but I know that isn't always the way these things go. Does that make me a Negative Nancy? No... I think it makes me realistic. Maybe soon I'll be able to sit down and pour out a post about the own roller coaster of emotions the end of treatment brings, but right now I just want to bang out an update before the kid wakes back up and asks for the boob.

Anyway... so far things are going well. We got here early yesterday morning and he breezed through his first day. He got sick once last night and was a little snoozier than normal, but no issues or concerns. My only bother is trying to wrangle him with the ridiculously short IV tubing he has to have, but if that's the least of my worries I'll take it.

He woke up this morning as happy as a clam asking to go for a "wok" and had a great morning. The antibody runs for 10 hours from about 1:00 pm to 11:00 pm and he gets morphine for an hour before and continuously until four hours after the antibody is finished. Of course he was a little sleepy again once the started the morphine back up but he's still doing well. He slept through a visit with Shannon, the chaplain, who's last day is on Thursday and will be sorely missed around here. But I was so glad that he was awake for his buddy Matthew's End of Chemo party. I'll admit to getting a little choked up when we sang the End of Chemo song because I'm just so happy to see how far Matthew has come.

Sam is, too...

His temperature has started creeping up a bit today but it's not scary high yet. It was 100.7 with his 8 pm vitals so they just drew blood cultures to cover all the bases. (Praying for no surprises like last time!) His weight is already up a little, too, and I can see the puffiness in his face and fingers, so I'm sure that the super-pee drug lasix is in his future. He is definitely nursing and sleeping a lot more and wearing out more quickly that usual but that is to be expected. But he's still eating well. He ate all of the bacon that came with my breakfast and a truck load of mashed potatoes for lunch and dinner.

Thank you for your love, encouragement, and prayers. If you promise to keep them coming, I promise to repay you with things like this...

...You're welcome. ;)

Gearing Up for the Last Scheduled Admission

2011-08-04T21:15:00.004-04:00

First off... we met with First Steps today. Sam has been eating really well and we agreed that he no longer needs services so he was discharged from First Steps! Exciting stuff!

We had clinic this morning to get cleared for Sam's last scheduled admission next week. It went well and his counts looked great. We also got to visit with Sam's buddy Matthew who was there for his last dose of chemo! Woot! It's so nice that we're finishing things up at the same time and I hope to get the boys together for normal boy time.

We don't want to get ahead of ourselves but we asked when we could expect to get his central line taken out. Dr. Cheerva said hopefully we can have it removed after his next scans. I would loooove for those scans to be clear. Oh, man would I freakin' love that. He'll be finished with the accutane in September and he can have his NJ tube out then. And that's it. No more treatment. We'll just scan every three months and pray diligently.

Pray that next week goes quickly and easily. Pray that Sam will be cancer free. And pray that we can close this chapter of our lives and move on into a new normal and long-term cancer survivorship.

"Are you comin' momma?"

Flashes of Hope

2011-08-04T17:25:00.005-04:00

We have had the privilege of having pictures taken through Flashes of Hope three times. We just got the pictures from the third session and I have to say that I think they're my absolute favorite.

Sam had just woken up from a nap on this day and I didn't think we'd really get much out of him... but they're all great! I love and cherish our other Flashes of Hope pictures but we didn't really get this much variety.

The photographer was Vickie Saewert and through a quick google search I found her website here.

Flashes is Hope is an amazing organization and I've mentioned here before but they were the first professional pictures we ever had taken of Sam. You can visit their website to learn more and to donate. $25 will provide a shoot for one child.

Wheee!

2011-08-01T21:33:00.005-04:00

Since I last posted, Sam's ANC has come back up! Thank you for the prayers. We are looking forward to getting our last scheduled admission over with next week! Also, since I last posted there have been several changes in Keegan's plan. Please remember to pray for him, too.

I finally got Sam's room cleaned up and now I'm trying to get the hubs to hang some more things on the walls.

On the wall above the cubbies I plan to hang some artwork. :)

The middle is something I painted for a patient art exhibition when Sam was first diagnosed. For the little ones I put blue tape on the canvas, let Sam paint over it and then peeled the tape off once it was dry.

This one was a finger painting that Sam did in the hospital last year. It was used in another patient art exhibition and it was given back to me in the frame.

For this corner we plan on doing this... (my mom can get us a great deal)

...unless of course we decide to turn Alex's office into a playroom. That might change things. His office has chair railing around the entire room and I'd like to paint the bottom half of at least one of the walls with chalkboard paint. We'll see.

Meanwhile, Sam is blissfully unaware of all of his momma's remodeling schemes.

And he's happy that we finally put together his train table! Thanks Wise Family! :)

Blog Vomit

2011-07-26T17:14:00.007-04:00

I've had plenty of things to blog about but it seems I haven't been able to find the time to sit down and string together some words into coherent sentences. I feel like every time Sam and I get into a good routine with our days something throws a wrench in it. So here are some random happenings.

-We finally got around to making our own laundry detergent. A whole post about that is coming. Here's a preview...

-I've been purging Sam's old toys and junk. I finally organized his craft stuff instead of keeping it in one big tub. My friend Tiffany had a genius idea for organizing and storing his medical supplies. And I've been going through and cleaning out his closet. As a result his room is a disaster and you can barely walk through it. Here are some crappy iPhone pictures of the process...

-At Sam's last audiology appointment they put him in the booth to test him with his hearing aids in. It's basically just a small room where he sits in my lap and they play different different sounds at different frequencies in varying areas of the room. When he turns his head to the sound he is "rewarded" with some visual stimulation. Well... he was not fond of the visual stimulation. They used creepy bunnies and bears that clapped and played cymbals and frankly it creeped me out a bit, too. He goes back tomorrow but they promised that when we try the booth again we won't use the animation. On a related note... he was doing so well with keeping his hearing aids in, but when he was really down and out in the hospital he didn't wear them for about a week. Once he was better and we tried using them again he started pulling them out. :\ Hopefully we can be consistant with him and he'll be used to them again soon.

-I've been brainstorming shoestring budget redecorating ideas. Pinterest is my friend.

-They've been having home health come and draw labs so that we don't have to drive down to the hospital so frequently. It makes things much easier on us, but I guess it's not so easy for the home health company. Last week when I hadn't heard from them by 10:00 am on the day they were supposed to come out I called to see what was up. Now, this isn't the first time I've had to call to make sure someone was coming... but the response really wasn't what I was expecting. They told me that their pediatric nurses were too busy and they didn't have anyone to come out. You can imagine how crazy that made me but I held it together while I told the scheduler that they needed to figure something out. Even if that meant sending an adult nurse out with the tubes and letting me draw the blood myself. (Seriously... it's not rocket surgery.) ;) She said that she would call me back after she spoke to her manager and thankfully our favorite VNA nurse, who switched areas so she doesn't come out here anymore, volunteered to go out of her way to come to our house for Sam. If it wasn't for this one spectacular nurse I'd have probably switched home health agencies ages ago. Too many scheduling misshaps and rude encounters. Thankfully we basically do everything ourselves and the only home health services we need are for lab draws.

-Speaking of lab draws... We went to OMO yesterday expecting a quick in and out visit. But when his labs came back they said that everything looked great but his sodium was really low. They gave him an oral supplement and we were told to hang around for two hours so that they could recheck it. Fast-forward to an hour after they finally got the drug from pharmacy and gave it to him and we find out that the machine in the lab needed to be recalibrated or something because it was giving lots of funky levels. They re-ran his original specimen and his sodium was fine! :P He is finally off of most of the supplements that he came home on after his last admission.

-I made color flash cards for him and my favorite colors to hear him say are lellow and puhpul. Oh, and boo and wed. Pretty much all the colors. He definitely learns and retains things better when you put them to music so we've been singing the Colors of the Rainbow song from Signing Time. When he signs rainbow it's adorable.

-I saw a potty that was only $12 when I was out the other day so I picked it up. He can tell us when he pees in his diaper after the fact but I'm totally not expecting him to potty train any time in the near future. I at least want to get him acquainted with the idea, though. He thinks it's hilarious to get to sit on the potty without a diaper.

-Sam's ANC is still reeeally low so we're being cautious. But he seems to be feeling pretty well. I mean, he felt well enough to wake up two hours early this morning, only take a 3o minute nap, and still stay awake until 10:00 pm. We have another audiology appointment in the morning so he'll definitely be sporting a mask outside of the house.

-Please pray that Sam's ANC will come up quickly, that he'll stay healthy through the rest of this therapy, and that he will be cancer free at the next scans. And if you're not already, please pray for Keegan. He needs miracle so please send all of the prayers, good thoughts, vibes, juju, whatever you can muster.

Just Hanging Around

2011-07-24T10:43:00.000-04:00

Sidewalk Chalk

2011-07-22T12:05:00.007-04:00

Since it's been so unbearably hot we haven't been spending much time outside. But we ventured out early this morning before it got too bad and I actually grabbed my camera instead of just my phone. I took one picture and noticed that my lens was fogged up... Yuck.

Sam played with sidewalk chalk for the first time.

"Circle?" Close... that's a square. haha!

"Go!"

Home health came and drew Sam's labs yesterday and I finally got the results this afternoon. His ANC has dropped some more and he's now neutropenic. Because he's on the study he can't get neupogen to boost it... we just have to be extra careful and stay on the lookout for signs of infection. It would have been awesome to get those results yesterday. Now I regret letting him play outside this morning, but there's nothing I can do about that now.

We go to OMO on Monday to check labs again. Pray that his counts will go up and that he'll stay healthy and infection free. Also, remember to pray for Keegan who is now in New York for treatment.

Happy to be Home :)

2011-07-17T22:52:00.002-04:00

As expected, the IL-2 and antibody combo really hit Sam hard. We were expecting to stay in the hospital until at least Sunday, but Dr. C surprised us and discharged Sam on Saturday!

His electrolytes got way out of whack so he came home on lots of meds. I have alarms set on my phone to give them 5 times a day. He also had positive blood cultures so he came home on IV antibiotics. He's still kind of irritable but hopefully he'll be back to normal by the end of this week.

He sees the doctor in the morning and has an audiology appointment on Tuesday. I'll keep you posted! :)

Winner!

2011-07-15T09:01:00.004-04:00

Congratulations to commenter number 16, the winner of the Jes Deis mini session giveaway!

I'll be in touch sometime today!

For those of you who didn't win you can get details here on how to get a deal on your very own mini session with Jes. Thank you to everyone who entered and congratulations to our winner!

day 3

2011-07-13T21:32:00.002-04:00

Don't feel much like posting but I'll update those of you who aren't on facebook.

This stuff is catching up to him and it sucks. Right now he's laying in bed (not caring whether or not momma is holding him!) swollen with hives and a 104 degree+ fever. All par for the course but his blood cultures came back positive, which we weren't expecting. They started him on vancomycin. His IV in his hand went bad today so they had to re-stick him and everything was late getting started. He'll be finished on Friday afternoon, but I kind of doubt that we'll get to go home then.

I just keep trying to remind myself that things could be much worse and that my Alex will be home tomorrow. :) Prayers, please...

day 1

2011-07-11T23:37:00.004-04:00

Sam was admitted this morning for IL-2 and ch14.18. This is the one where he has to have a peripheral IV site since he has 3 things running at once that can't be put into the same IV/lumen. So the morning got off to a rough start when they stuck him 5 times to start an IV. The first IV nurse tried twice. The second IV nurse tried twice and then was going to give up. Luckily she gave it one last shot and got a nice IV in his hand. They had looked for veins and tried in the bend of his arms and even talked about trying his foot, but I really wanted it in his hand because it's easier to manage with his toddlerness and plus it should hopefully last longer.

After his little IV trauma he walked around in only a diaper and crocs like a goober, but he was a crankpot. He even intentionally smacked me in the face when I couldn't get my boob out fast enough for him. He's never hit to intentionally hurt and it really took me by surprise. But once they started his morphine and it kicked in he was in a much better mood. He was kind of high and a little hilarious. :) As the day went on he just went into hibernation mode where he laid in my lap to sleep and nurse. All day. I'm expecting my milk supply to be so ramped up by tomorrow that I'll be able to feed an entire village.

Thomas heading over some mountains...

Our position for most of the day. I'm going to wind up with a DVT from sitting cross-legged so much! ;)

We started the day out in our old transplant room but luckily moved us up to a bigger room with a shower. But that really won't do me any good without any water. What? No water?

To add to the excitement of the day there was a huge, and I mean huge, water main break downtown, leaving the hospital without water. That means no hand washing or toilet flushing. Sweet. That article states that Norton is using a backup plan, but I'm pretty sure that backup plan just means giving each patient a few bottles of water in case they really need to wash their hands. I feel so posh washing my hands with bottled water. ::hair flip:: In all seriousness, I'm not complaining and I can't fault them for something like this... but it definitely stinks.

Even though today hasn't been the easiest day I've ever lived, I just keep thinking about how incredibly grateful I am for this life God has blessed me with. I look at my son and know that every single breath is a gift, and it could all be taken away in an instant. I think about how much I love him and sometimes it's so much that it physically hurts. And then I think about how God's love for me is even deeper than that and it's just unfathomable... and it makes me smile.

Please continue to pray that this week will go by quickly and as smooth as butter. Pray that Alex will have a good (and successful) week working in Nashville and for safe travels home to us on Thursday. And if you haven't entered the giveaway yet, for Pete's sake just do it because it ends tomorrow night!

Such a Talker

2011-07-10T22:58:00.004-04:00

Sam is constantly talking like this now. He walks around muttering to himself in toddler jibberish with occasional real words thrown in there. He has extended pretend phone conversations. And he's really starting to parrot words and sounds a lot more. A lot of people have said it must be the hearing aids (which he's totally not wearing in the video because I always forget to put them back in after naps) ...but I think he's just finally reached that stage. :)

For the record he didn't go to bed early. :)

We are to be at the hospital at 7:00 am. Please pray that this week goes by quickly and smoothly. Pray that the treatment works, is easy on him, and also that he's easy to keep under control while he has THREE different IV tubes going into him at the same time. And pray that I can keep my sanity until Alex comes home on Thursday. I kind of miss the guy.

If you haven't entered the giveaway yet, you had better hurry up! Maybe you need to be reminded about the awesome photos Jes takes..

See! You've got nothing to lose by entering, but you'll be missing out if you don't!

Can I Use This Forum To Pimp Out My Husband's Band?

2011-07-07T22:25:00.003-04:00

The answer to that question is: Yes. Yes, I can... it's my blog. So neener. :P

A few months ago Alex was browsing craigslist, as that is one of his favorite past times, and he came upon a band that was looking for a bass player. I know, right? You're thinking they probably suck? I did, too. But he checked out their music and actually liked what he heard, so he met with them for a jam session. (Is that what the cool kids are calling it these days? A jam session? I don't know.)

Anyway... I was kind of scared that it was just a ruse to get him somewhere and steal his kidneys. But he made it home kidneys intact and was super excited about the prospect of playing with some fantastic musicians. They've played a few shows together and Alex is just having a blast, which makes me happy. And he's listed as a member on their facebook page, so I guess that makes things kind of official. ;)

They recently played the CMA Fest in Nashville. Check out this video.

(For those of you who don't know Alex, he's the bass player aka the hottie laying on the bed and ironing his button-down with his cross tattoo...)

I totally need to get a sitter for the next show so that I can go. Who's coming with me?

Day 3

2011-07-06T14:53:00.004-04:00

Things are still going well so far this week. Sam is feeling perfectly fine and has been go go going nonstop every day. In fact... he's been on a sort of nap strike. Yesterday he napped for maybe 45 minutes and then stayed awake until close to dang midnight! His earlier nap didn't even last long enough for my Jimmy John's to get here. I don't know if it's teething or if it's just that he would just rather be in his bed at home. Maybe he wants me to lay down and nap with him. Yes, that must be it! Anyway... he's napping at this moment so I decided to pop on here and update the ol' blog.

(And now I've jinxed myself and he'll wake up in .25 seconds.)

We've just been chillin'. Hanging out and doing crafts. Having music therapy. Performing Rock-A-Bye Your Bear for everyone. The whole no napping thing has made him a little cranky at times but he's been generally agreeable.

We've been sort of working on shapes and colors. So far we have circle, star, and yellow.
For this one I was chanting "Pur-ple Cir-cle!" ::clap, clap, clap-clap-clap::

Watching Thomas. Oh! And he's been eating chicken! This is a big deal since he's always gagged on meat! :D

Making playdoh stars and then pinching them. :)

And me? I've been rocking the fauxhawk today.

Please pray that Sam will continue to do well. Start praying for next week which is expected to be rough. And pray that time will fly until next Thursday when Alex comes home because I really want him home. :)

_____

Just a little note about the giveaway. Please leave a SEPARATE comment for each entry. So for example... instead of commenting, "I would love to win! I like Jes on facebook and I shared this contest on facebook." Leave three separate comments:
1. I would love to win because I need Jes to take pictures of my awesome fauxhawk.
2. I like Jes on facebook.

3. I shared on facebook. (link)

With the comments/entries numbered this way it just makes it easier on me. So if you left one comment for all entries please go back and leave separate ones or it will only be counted as one entry. Thanks. :)

Giveaway with Jes Deis, Photographer Extraordinaire!

2011-07-05T09:03:00.009-04:00

We were admitted yesterday for therapy and Sam is doing great. I hope everyone enjoyed the holiday! Alex is out of town but Sam and I still had a great holiday weekend. The highlight was our mini photo session with photographer Jes Deis on Saturday.

Jessica Deis is one of the coolest people I know. Like, seriously. Her life is inspiring. She's an amazing wife and mother who creates beautiful things. I honestly don't know how she finds the time to be so awesome.

One of the things she's so awesome at is taking pictures. Whenever she takes Sam's pictures I have such a hard time figuring out which ones to get prints of!

Here... I'll show you...

See?!

Told you she was awesome!

Now what would you say if I told you that you could win a free session with her? You'd like that very much? I thought so. Jes has generously agreed to offer a free mini session to one of you lucky local readers!

Here are the details:

The Prize:

1 free mini session + 1 free 8x10 or 2 5x7 prints

How to Enter:

Simply leave a comment letting me know how badly you'd like to win. :) This one is mandatory.

Optional Extra Entries:

(one extra entry for each)

Please leave separate comments for each entry or it won't be counted!

1.) "Like" Jes' page on facebook. Leave a comment letting me know you did.

2.) Follow Jes on Twitter and tweet about this giveaway. Leave a comment with a link to your tweet.

3.) Share this giveaway on facebook. Leave a comment with a link to your post.

4.) Share this giveaway on your personal blog or website. Leave a comment with a link.

~~The contest will close at midnight EST on July 13, 2011. One winner will be picked via random.org and announced on July 14th.~~

The contest has been extended through 11:59 pm EST on July 14, 2011! One winner will be announced on Friday July 15!

Local participants only.
Pictures will be taken anywhere in Louisville within the Watterson Expressway. Jes can suggest great locations.
Mini sessions last 30-45 minutes and trust me - that's plenty of time to get some great shots!
I was not compensated in any way for this post or to tout Jes' awesomeness.

video

2011-07-03T11:25:00.000-04:00

Oh my gosh, I sound so country.
But my kid is cute. :)