Going bald (again)

Austin's chemo dose was increased last month so as a result his hair has been falling out again. He won't be totally bald like before but he has some bald spots. I really resisted shaving the rest off until Austin started complaining about being itchy from the hair all over him. So I gave in and shaved the rest off. It makes me so sad to see him bald again because it's a constant reminder of the battle that he is fighting. Fortunately, Austin always finds the silver lining and his response to my sadness was: "Well look how easy it is to comb my hair now!"  You win Buddy, you win.

Pokes pokes and more pokes

Our March trip to Primary's didn't go as we hoped. Once again we had to use TPA to get his port to draw back blood.  So frustrating. When it came time for Austin's lumbar puncture they were unable to get the needle in the right place.  They poked his back 4 times without success. It may be because he has gained some weight, because they couldn't position him right, or it may have just been bad luck.  Whatever the case, we have to come back back again in a month.  I was beyond frustrated with the whole trip. Poor Austin was so bruised and then not happy about another poke so soon.  He is resilient though and I think his bruises on his back with heal faster than the ones on my heart.  His smile continues through the pain, ever the warrior that he is.

Welcome 2014

Austin rang in the new year with a week of steroids.  I have to remind myself over and over that he can't help how nasty he becomes because oh my goodness....it's not fun.  Thankfully it's only every 3 months now.  Austin's January checkup went well and we were able to access his port without TPA this time.  Hooray!

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.

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.

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!

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.