Friday, December 27, 2013

Christmas at Primary's

2 days after Christmas we made the trip again to Salt Lake for Austin's appointment at Primary's.  It was a fairly routine clinic visit except that once again we had to us TPA to get Austin's port to draw back blood.  It's so frustrating because it means extra time waiting around.  We were told we will have to see how the port continues to function but that it is an option to remove the port and just start a regular  peripheral IV each time Austin needs Chemo.  This isn't ideal because the chemo is very caustic on veins, but it would eliminate the worry about a central line infection.  We will see.. Austin wasn't thrilled about the idea of starting an IV each time and I don't want to ruin all his veins with Chemo.  So we will keep that in our back pockets and wait and see.
The drive to Salt Lake.  These kids are pros!

Getting assessed by Dr. Eldridge

Yep, he's bored

Waiting for his Port to work

Off to La La land

Waking up
Austin got his Lumbar Puncture and Chemo and we made our way home.  Austin has completed 3 rounds of maintenance and has 8 left.  So far to go...but he has become accustomed to this new "normal".  Other than these appointments that interrupt our routine and the daily pills he takes, for the most part we are not bothered too much by the big "C".  It lurks in the background, especially in my mind but we are taking one day at a time.  Austin is healthy right now and for that I am very grateful.

Wednesday, December 25, 2013

Merry Christmas 2013!

Merry Christmas!  We had a wonderful, quiet holiday.  Nothing fancy, no traveling, pj's all day.  It was great.
Meeting Santa

Gingerbread houses

Christmas Eve

Christmas Morning

Disney Infinity...Austin has been begging and begging for this.  It's what he asked Santa for.

Monday, December 2, 2013

Checkup and more TPA

Another checkup with Dr. Marsden.  Austin is doing well and feeling good.  No illness to report.  Unfortunately, the home health once again was not able to get Austin's port to draw back blood.  So after the checkup we headed to the Peds floor for TPA.  Dumb port.  I hate it when it doesn't work right.  I know this is "norma", but I still worry and worry about what it's doing inside his body.  I hate that it is so close to his heart.  After about an hour of TPA, the nurse was able to get blood.  The labs were sent off and we went home.

My silly boy...playing around while waiting for Dr. Marsden

Trying to get the port to work

Just because you are in the hospital doesn't mean you get out of doing your homework!

Wednesday, November 27, 2013

Getting Glasses

Austin has been complaining for awhile that he couldn't see well far away so we visited the Opthomologist.  Sure enough he needed glasses.  Not surprising really since both his parents are practically blind.  I think he looks very handsome and very grown up in his new glasses.

Friday, October 18, 2013

Make a Wish Trip

How do you describe the most amazing trip?  When your child is diagnosed with Cancer your world is turned completely upside down.  Your child's days consist of pain and tears, sickness and fear.  As the parent you spend countless nights worrying instead of sleeping.  You watch your child forced to grow up too fast as they are confronted day after day with things that they shouldn't even know about.  When the opportunity comes to step away from all of this, to allow your child to leave the pain behind and just be a kid for a little while, well, it's hard to describe how amazing that gift is.  Make a Wish gave us just such a gift.  The ability to leave behind the world of Cancer and allow my little boy to just be a kid.  To ride roller coasters and see Mickey Mouse, build sand castles on the beach, and pretend he is Harry Potter.  Not once in 10 days did he have to be poked or examined or throw up from poison injected into his body.  As his family we were able relax and build memories that will last a life time.  As Austin's parents, we were able to see pure joy and take a break from all the stress of his treatment.  The memories made during this week will help us face the tough road ahead as we face 2 more years of treatment.
Ok, get ready for picture overload!  This is only a taste of our amazing trip.

Our bags are packed....Austin's wish grantors gave us these luggage tags.  It made them super easy to find at the airport.

Ready to go!! These are 3 very excited kids

Waiting to load the plane.  

We flew on Southwest and they were amazing.  We got to board the plane first and the kids got to go into the cockpit and meet the pilot.  I don't think they realized how big a deal that is but their Mom and Dad sure did!

We stayed at Give Kids the World Village.  It is a very special place only for Wish kids and their families.  The atmosphere of this place is incredible.  It is entirely run by volunteers and that translates into a very special spirit of love and hope.  We had as much fun in the Village as at the parks and made sure we returned early each night to enjoy all of the activities.
In front of our Villa
Meeting Mickey

Austin's star that is now hanging in the "Castle of Miracles" in the Village.  Every wish kid gets a star and there are thousands all over the tower.

Face painting in the Village

Austin's favorite treat.  The Village has free ice cream any time you want it.  The kids even had it for breakfast one day!

Our tickets to the parks.
On to the parks.  Make a Wish gave us three days at Walt Disney World, two days at Universal Studios, and one day at Sea World.  Kevin made us matching shirts to wear at each of the parks.  My Mom joined us for 4 of the days and it was so fun to have her with us.  She has been our biggest supporter through Austin's treatment so it was only fitting that she get to enjoy in Austin's wish.  We didn't get her onto any roller coasters but she was happy to watch Jaxon for us so the rest of us could go on the big rides.  Thanks Mom, we love you!


Space Mountain

 We were so spoiled at each of the parks.  They really treat Wish kids and their families like royalty.  We never had to wait in line, we got right in to restaurants, shows, and meet and greets with characters. They gave us free pictures and food.  We decided that we will never be able to go back because any other trip wouldn't be the same.  Being treated as VIP's is pretty darn fun!

Jaxon's first time on Splash Mountain!  He loved it

The Haunted Mansion

Meeting Madison's favorite princess.  Doesn't Austin look thrilled?  We had to practically drag him into the building as he wanted nothing to do with princesses.

The penguins at Sea World.  The kids were freezing, but I could watch them all day.

After a week of running to parks and all the fun at the Village we were ready for a relaxing break before we came home.  We extended our trip with three days at Cocoa Beach.  This was my favorite part of the trip.  We sat on the beach and the kids made sand castles and played in the waves.  The water was warm and beautiful. 

After 10 wonderful days we had to return to reality. I cannot express in words the immense gratitude that I have to all of those that made our trip possible.  To all of those that donated money to Make A Wish, to our amazing wish grantors that put everything together and made Austin so excited,  to those that volunteer at Give Kids the World, to the Ihop waitress that gave us our meal for free, and the kind woman at the airport that gave us money and told us to buy the kids some ice cream; to all of these and so many more we say thank you.  Thank you for reaching out and helping a little boy and his family experience the most amazing 10 days of our lives.