The Exhaustion

This month's checkup came and went without event.  Austin feels good and hasn't been sick.  I want to talk a little about the exhaustion that has set in. This marathon of a treatment plan is 3 1/2 years long.  We are a few months to the 2 year mark. There are some days that I think it will never end. Austin is so tired of the frequent doctor's visits, the pills he takes every night, the painful pokes, the nausea and vomiting and general crappy feelings that come with chemo.  As his parents, we are so tired of seeing him suffer, of being the "bad guys" that make him go through it all. I feel so guilty every time I drive him to his appointments to get tortured. I know it's not my fault but I feel so responsible and I somehow feel like a failure that I can't take it all away and make it better.  The constant worrying and sleepless nights take a heavy toll on me.  I sometimes lose sight of the big picture, I forget to count our blessings and appreciate how good Austin is doing. Sometimes, an extended pity party sounds great. Austin rarely complains. He takes his pills every night without a blink.  He usually lets out a long sigh when I tell him we have to go to the doctors again but he doesn't whine. He is so brave and manages to keep his sense of humor intact through it all.  But sometimes, every now and then, I see this look on his face and  I know he feels the exhaustion too. 

Trying for the LP again

It was only a month since the last visit and poke but we made the trip to Primary's again. Once again the port wouldn't work without TPA. We are really getting tired of it because it adds hours of waiting around for the TPA to work so they can draw blood. Finally they were successful so we headed to the RTU for Austin's lumbar puncture. Because the last time was so difficult they wanted to have Austin go back to the RTU where they can use heavier sedation. Austin was not at all happy about this because he hates waking up in the recovery room.  Mom and Dad hate it because it takes so much longer and makes Austin more sick.  The LP was successful so we headed out.  We went to lunch and Austin seemed to feel fine and eat without a problem but as soon as he finished he had to run to the bathroom to throw up.  He came back and said, "ok I'm ready for desert!"  I told him he acts like a pregnant woman. He was not amused.

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.