My turn

Just a quick disclaimer, its Eric, not Cindy - I couldn't sleep so I hijacked the blog.  We had quite a day yesterday.  Cindy has said that writing this is therapeutic, so i'm giving it a try.

   Atticus got an invite to play on the baseball team that he played with last fall.  One of the players quit the team and they are letting Atti play the last couple of games.  Yesterday was Atti's first game.  Atti hasn't been doing that great the past couple of weeks, but was so excited to play, Cindy and I couldn't say no.  Atticus was beyond excited, and kept chanting "Let's go Longhorns! (his team's name) all the way to the game.  Cindy and I were beyond excited.  I have a picture in my office of Atticus in his baseball uniform-its one of those rare pictures that a stranger could look at and really see Atti's personality.  I force myself not to look at it too much because I have a hard time not tearing up when I do.  When I got home from work he was wearing the uniform and I nearly lost it.  There's just something special between a father, a child and sports.  I felt an overwhelming sense of gratitude that Atticus was able to play.

        When Atti was first diagnosed and couldn't walk, we all had a rough time for a few weeks.  Not only could we see him suffering, but we could see that Atticus knew something was wrong with his body.  He would get so frustrated that he couldn't walk or play or even chew his food.  We pleaded with God to let the radiation and chemo help Atticus, so that he could, at least for a short time, run and play sports and do all the things that define him as a little boy.  We have been so blessed over the last two months to see Atticus happy again.   Every time I see him run and have fun is a gift.  Seeing him play baseball was going to be the apex of that gift.  I knew that he wasn't going to be able to play like he used to.  He can't swing the bat like he used to, can't run as fast, can's throw as well - but he can play, and that's all that matters.

       Atticus came up to bat and looked so happy.   Moments like these define joy in life.   He hit the ball off the tee and ran as fast as he could towards first base.  I didn't see if he was safe because I had to take a "tear walk" (basically I walk away from people so they won't see me cry).  With so much practice, I've become very adept at controlling my emotions, but I couldn't keep it together.  So many emotions filled me at one time; overwhelming joy and gratitude seeing Atti playing baseball, but then also an overwhelming feeling of sadness knowing that this would be one of that last times I would see him play.   I really try to "be the strong one" and keep it together as much as I can in front of Cindy and my family so that I can be the source of comfort,  but this time it was Cindy who came and comforted me.  I can't imaging what we looked like hugging and crying a few feet from the bleachers.  The opposing team may have thought we were taking Atti's out a bit too hard...

     After the game, Atti and I had some coveted father son time on the ride home.  When Atticus played last fall, Cindy would take Isaac home before the game ended and I would usually take Atticus home in my car.  We would always stop at the gas station to get a treat and talk about the great plays he made.  yesterday, we got the treat, but didn't talk much baseball.  I think he knew that he didn't get a hit, so he didn't want to talk about the game much.   I can't imagine what it must be like for him.  He knows he is sick, but he doesn't know what cancer is, or how it is supposed to be affecting his body.  I can't imagine how frustrating it is for for him that he can't do things as well as he used to and not understand why.

    We all didn't get home until about 8:30 and Atticus was really tired.   As usual, he wanted Cindy to sleep with him.  A few minutes after he went to bed, Cindy came in our room and told me Atti's breathing was "off."  She left the room to call the doctor and I went in Atti's room.  Atti would take a few breaths and then stop breathing for about four or five seconds (I had to count out loud because those seconds seemed like minutes).  We have been told that when Atti's tumor starts growing again, his symptoms would come back and the tumor would eventually affect his breathing, which is often how DIPG kids pass away - they stop breathing in their sleep.  These past few weeks, Atti had been extremely fatigued, was vomiting off and on, and was starting to show some signs of facial paralysis.  Needless to say I was scared.  When Cindy was on the phone I knelt in prayer.  I wasn't ready.  This wasn't how it was "supposed" to go.  We were "supposed" to have more time.   I pleaded with God that we would have more time.  On our way to the ER, and during all the waiting that invariably happens at the ER (yes even terminal cancer patients have to wait), I was having a mental war with myself.    It's the same mental battle I have at certain moments of every day - to seize every moment and find the joy in each day, rather than dwell on the negative and the reality we will soon face.    Some days it takes everything I have to fight that fight, let alone win it.  During the first couple of hours at the hospital, I was losing that battle, and I was probably a bit rude to the ER nurses, who weren't as good as Atti's normal nurses.

     Atti, as usual, was a champ at the hospital.  Most times when we call the doctor and have to go in to the hospital, Atti does his best to make the doctors and nurses think we are the most paranoid parents alive for bring him in.  He was cracking jokes, using funny one liners (like asking Cindy to play a game on her phone and saying,  "Mom, what does it matter in the grand scheme of things"  in front of the nurses).  I am so proud to be his dad.  After an x-ray, a CT scan, and lots of waiting, the doctor gave us some good news.  He did not see any tumor growth, but did possibly see some increase in the swelling, which may have been causing some of Atti's issues over the past couple of weeks.

   We will find out more with another doctor visit tomorrow and MRI on friday.  But for now, the news that it is just  some brian swelling, rather than tumor progression, is great news.  From our understanding, we can control swelling with more steroids (I know, I know, they are trying to get steroids out of baseball-we just hope Atti doesn't get a random doping test before his next game :)! ) ( I am tempted to "juice" him with steroids right before the next game so that he can go out in style with some long bomb home runs...just kidding of course...maybe)

    Finally got home at 2:30 a.m. or so.  We all crashed.  Just another day in the life of a terminal cancer patient.  Here are some pics of the big game.

        Gotta get loose before the game

     Look at that batting stance!

It must have been a great pep talk!

Atticus' new friend Cline.  He was so nice to Atticus

           

                   Showing dad where he runs after a hit.  Mind the plumber's crack dad.

   What a fearsome hitter on deck.

                         




   Atticus, turn two!!!

 Great hit buddy.  What a miracle!! 

 A couple of months ago, he couldn't walk.