Friday, December 31, 2010

Cave Touring

Since we stayed an extra day at the lake, we decided to tour a cave nearby.  

Relaxing at the Lake House

Since we all are home between Christmas and New Years, we decided to spend time at the lake house.  We planned to stay 4 days but ended up staying 6.  We spent most of our time just hanging out but did some tourist stuff too. 

Playing Wii

 More Wii

Lego ship building

Playing a new game 

 We visited the Butterfly Palace in Branson.  All of the butterflies there for the winter are white. 

 A good photo op, but K is giving me attitude and J is trying to give me bunny ears...

That "statue" is a real person.  I thought it was cool, but Joey thought it was creepy and wouldn't let me take a picture of him with her.

Being goofy in the palace

We went into Branson for dinner and walked around Grand village. 

Christmas 2010

Jon and I went to Katherine's Christmas party at school.  

We also went to the Christmas parties at Tree House. 
Katherine got a good book in the book exchange.   

In Joey's room - somehow I ended up reading to the class.  

Mrs. Kathy and Joey 

 Grandma reading the Christmas story to the kids on Christmas Eve. 
I took several pictures and Joey was goofy in every one.

 Opening presents at Grandma's

 Opening presents at home on Christmas morning.  
This is what Joey got for Katherine. 

 This is one of Joey's favorite gifts. 

Christmas dinner at Mom's/Grandma's.  The Perez family joined us - this is Sara and Ethan.

Friday, December 24, 2010

All Good News

Lots of good news and blessings from God to share today:
  • It's Christmas Eve and we're not in the hospital 
  • His counts came up some this week from last week - his immune system is stronger
  • The rash is still there but going away
  • The lips sores are almost gone
  • No vomiting since Wednesday
  • He went to a movie yesterday for the first time since diagnosis (I've been too scared to take him into a theater)
  • He gets to "meet" his Uncle Dave (Jon's only brother) today - he lives in Japan and Joey was 18 months old last time he was here.
  • I'm done going to work until Jan 3
  • My company made a deal with the state this week to keep them in Wichita for the next 10 years, rather than moving to a Louisiana, which as been an option for the last several months
  • Really BIG news: Jon got a job and starts Feb 1!  He'll be designing and selling for Superior Landscape Management.  It seems like it's going to be a much better place to work than where he was before and it's the exact type of job he wanted.  

Monday, December 20, 2010


Here are some articles about Joey's Pilot for a Day:

After the awesome Air Force experience last Friday, we went to Table Rock for the weekend with the family.  My parents recently bought a house right on the lake and this was our first chance to go with Joey.  It was good to get away.

Last Tuesday, he got 2 hours of fluids and then a spinal tap.  He was a very big boy and didn't fight them (because he "finger promised" me that he would be a big boy), but the doctor had a difficult time getting the fluid to come out and had to dig a bit, so it was painful for him.   He carried around his bag of chemo for 48 hours from Tuesday to Thursday afternoon.  He spent Wednesday morning at Tree House - the first time he has taken his bag there.  I thought he might be embarrassed but he was fine.

They checked his blood on Tuesday, and we discovered that some of his counts plummeted from the week before. His immune system is lower now than it's been for a while.  We're starting to see some side effects to the methotrexate. He's got a full-body rash, sores on his tongue, and sores on his lips.  There's not much we can do - just wait for them to go away.  They don't hurt him as much as they look like they do.  

We saw the Nutcracker Saturday night and he loved it.  I made him wear a mask since his counts were so low - I was too paranoid about having him sit in an auditorium with all those people. 

He's been battling a cold for the last few weeks and had stopped eating this weekend.  When he saw Dr. Rosen this morning, he wasn't feeling well and the doctor knew the look.  He handed him a bucket and Joey vomited for the first time since this all started.  Afterward, he felt much better and ate his lunch.  After sleeping for the afternoon, he woke up with lots of energy for the rest of the day. 

 Outside Bass Pro Shop in Branson

 Making Rudolf at Build-A-Bear

 Katherine, Kyler, Kennedie, & Joseph with their new friends

 Being silly at Bass Pro

 Got a pic of Katherine with Santa but not Joey - he refused b/c it wasn't the "real" Santa

 Posing before going to the Nutcracker

 Being silly -if you look close, you can see the sores on his poor little lips

Saturday, December 11, 2010

Pilot for a Day

We got to spend much of our day at McConnell Air Force Base where Joey was Pilot for a Day. 
It was amazing - they put a ton of effort into it and made it as special as possible for him.  He turned shy when people were really watching him, but he loosened up and had fun with everything.  Praise the Lord, he was feeling really good and had more energy than I've seen for a long time.  It couldn't have gone better.  We are so thankful to everyone there who made it happen.  They were so good to us!

Here was the schedule of events:
Presentation of his own Joey-sized flight suit and patches
Climbed the stairs to the control tower and watched a touch-and-go of a KC-135
Visited the control tower simulation room
KC-135 flight simulator - presented with his wings and his own helmet and got to "fly"
Toured a real KC-135 - learned how to use the boom and sat in the cockpit
Visited the base fire department to shoot water with the "snozzle"
Met some attack dogs, saw a real demonstration, and got to pet the sweet boy, Adam (at least he's sweet to the "good" people)
Pizza and cake party where we (mostly Joey) were presented with gifts and got to meet more awesome people 

I'll get more pictures from the base photographer and will share them then, but I'll share some of the ones I took for now. 

 Looking at maps during a tour

 They told him that he should wear his hat whenever he goes outside and take it off when he comes in and he was determined to follow the rule. (He only had it on here for the picture.)

In the control tower watching a KC-135 come in for a touch-and-go 

He got to sign his name in the tower. 

He got the Commander's parking space while we were there. (I think it's the Commander's)

Receiving a special coin

Getting his wings from the pilot he flew with in the simulator (a shy moment, but he loved it)

Another shy moment getting his helmet, but he loves it and can't wait to show it off.

In the simulator - he really wanted to sit there by himself, but he wasn't tall enough to see out of the windshield.  I guess tankers aren't made for pilots who are 39 inches tall.

After "flying" - he made a couple of landings and did some spins. 

A real KC-135 (his eyes are really sunlight sensitive right now)

Looking at the boom

At the fire station, after shooting the water
He's helping empty the hose.

The firemen

Adam - the dog who can love you or kill you, depending on what he's told to do :)  (Actually, I don't think the dogs are trained to kill, but he certainly could!) I've never seen a dog so well trained in my life.  It was amazing. 

I believe this was made by an Air Force wife.  Joey wanted the wings, so they cut them out and sent them with us to eat at home. 

Joey fed live goldfish to the piranha's - I think the men thought it was funny that he wanted to do it - they are gathered around to watch.  Notice Katherine hiding behind her dad - she didn't think it was as cool as Joey did.  

Sunday, December 5, 2010

There's not too much to report from the last week or so.  He's been getting chemo each week now and has been on the steroids this week.  I can't wait for him to go off the steroids - they mess with his stomach.  He has been slowing down some this week, but not too bad.  He's willing to walk most of the time but asks to be carried more than normal and doesn't like going up and down the stairs.  He'll go in tomorrow afternoon more treatments.

We did some fun things this weekend.  His grandma took him to the zoo Friday afternoon, we all went to lunch and a Christmas play on Saturday, and we had a family Christmas dinner Saturday night with my Dad's side of the family.  Tree House had their Christmas program Saturday afternoon and I was hoping he would participate, but didn't expect him to.  They tried, but he refused, so he sat on my lap and watched his class.  A year ago, he had a lot of fun singing in his program.  We see a pretty big difference in his personality since he's been sick and spent so much time in the hospital.

I'm really praying that he stays well this week.  This Friday, he gets to be the Pilot for a Day at the Air Force base.  The have 4 hours of stuff planned and every morning he asks "do I get to be pilot today".  After that, we're going to my parents lake house for the weekend.  They bought it right around the time that he was diagnosed and we haven't been able to leave town until now, so he's really excited to go.  His grandpa has already checked out the directions to the nearest hospital to the house.  It's risky for us to plan too many things, but it's hard not to.  We just have to know that we could end up in the hospital and have to cancel.

 Playing Wii - Super Mario game that he loves

 9 Kids at my aunt's for Thanksgiving

 Trying to get the star on the tree - he wasn't quite tall enough.  (Joey refuses to wear clothes at home, so I have hundreds of pictures of him in his underwear - at least he had his shirt on here.)
 Decorating the tree at Grandma's

He got to open one present from Grandma after putting up the tree.