16 December, 2011

One Year

Today marks the first Anniversary of what I hope will have been the worst day of my life.  Its 7:00, exactly this time last year I was just meeting  Kasie and Robert at the hospital.  I got the call from Kasie an hour earlier saying that the Pediatrician thought Robert may have Leukemia, and we should go to Children’s immediately.  The call was crushing, I just couldn’t believe it.   I was already in Decatur, so I went to the hospital to wait for my wife and son.  The near hour I spent waiting, writhing in anxiety, I tried to grasp what was going on.  I had been searching my mind for what I thought I knew about Leukemia.  "I know it’s a blood disorder...but c'mon it’s not REALLY the C word”. 
In a truly vein attempt to prepare myself for the experience, maybe to afford myself a chance to pompously posture as the infallible, unshakable rock on which the foundation of my family rests…I figured I needed to get ahead of this Leukemia business.  Surely I pictured myself in some         Rockwell-esque scene, standing behind my "overly concerned" wife, rubbing her shoulders and assuring her... "there, there, honey...don't you worry, everything is just fine". 

I began to gather information from which to build my platform of victory.   After just a few minutes of searching Google, I felt as if my entire body was instantly engulfed in flames.  My eyes welled and as if I was drop kicked to the chest I unwittingly collapsed in a waiting room chair with the air seemingly too thick to breath.  "It’s Cancer...Its blood cancer you damned idiot." 

I sat there staring at the floor for a while, oblivious to my surroundings.  After about 30 minutes I finally became aware of the bustling room around me.  I realized that there was absolutely nothing I could do to prepare myself, or protect my family from whatever lay ahead of us that night.  I found a quiet spot, folded my hands and prayed.  I found myself unable to give truly humble, thoughtful prayer.  Instead it was a desperate, shallow, mind racing, negotiating sort.  Similar to my prayers from years before as a child, in a desperate attempt to ferry a favorable outcome in an important situation like sports or grades… I was wheeling and dealing.  "Please don't let Robert have Cancer...I'll do this...I won't do this....I'll do that...etc".  I had to calm down and figure out what to do.  And all I could come up with was to relax and try to be there to make the best decisions I could for my boy.

 A few minutes later Kasie and Robert arrived.  She was holding the hand of a pale, tired, sick and bruised looking little boy who smiled when he saw me. I had never been so relieved to see my wife.  I immediately realized that with my best friend at my side we would figure this out the best that we could.  We handed our son over to the doctors and a few hours later, around midnight, a good man had the terrible job of telling us our son definitely had cancer.  Now it was Dec 17th, a new day and a new reality.  It was the most challenging year of our lives.  I immersed myself into all things cancer.  My wife struggled between being with her sick son at the hospital, and being with her other two children.  It’s unimaginable the strain and guilt she had to deal with in that situation.  We became “cancer parents”, as if we were filling a mold that had been predetermined to be ours.  We met others who had gone this way before.  Once we wrangled our emotions, we settled in to the routine and overwhelming logistics of the challenge.  Once we were confident that our son was going to survive, and this is something that we just needed to get through, it got a bit easier.  Home became some exotic resort, and the ever present goal.

What a difference a year makes!  As if acting upon a cue to make me shift gears, Robert and Ben are downstairs yelling and carrying on.  We of course still have spinal taps and IV chemo every month at the hospital, and oral chemo every day at home, but Robert doesn't have time to dwell on that.  There are some episodes of getting sick, sore bones, and the like but he trudges through it all.  We have one week a month of the Steroid monster, but it subsides as quick as it arrives.  Robert has been busy with school, missing very little, and he and Ben are all amped up for Christmas.  We spent last Christmas in a hospital room so I assure you we are reveling in every moment this year.

2 more years or so of chemo, then all we have to do is pray that it never comes back.  We'll have a few fevers and hospitals trips in there for sure, but hopefully things will pretty much stick to plan, we can drive on and keep moving forward.  We have just received a report confirming that Robert is having a few cognitive effects from all of the chemo.  Some days it’s hard to remember the toxic cocktail that is coursing through his veins, but it’s there.  You sometimes hear breast cancer survivors talk about something they call chemo fog.  It can be hard to concentrate or get your mind to go the direction you want it to.    The docs do not think that it’s anything permanent, in fact he is above average with math and science, which shows other good cog. function.  However his writing is worse than it was when he left Kindergarten, and he is slower at reading than his classmates.  That's where the concentration issues come in.  Fortunately between the hospital’s experienced education staff, and the caring folks at Roberts school, a plan is being developed to get him back on pace as these effects hopefully diminish during his 2nd grade year.

The exciting thing is that we are enjoying life again, dare I say  in some ways even more than previously.  Being Christmas time, let’s make an obligatory gift analogy. I know I've already made this point, but it's worth repeating.   Along with all of the terrible, dark things that accompany a child having cancer, comes an amazing gift.  That gift is perspective.  Having the right perspective on life is truly liberating. We have a clear vision of what’s important in life.  What’s worth worrying about, and what’s not.  I am often amazed when I think about the things I was worried about before all of this.

I can’t say enough about how lucky I am to have married my best friend.  We've notice others at the hospital who are not as fortunate.  Neither one of us could have made it through this year without the other.  I feel that it was no coincidence that when one of us was having a weak moment, the other was strong.  And together we made our way through what we pray is the worst of it.  My wife is truly amazing, and the best person I know.

I asked my wife out 6 times before she finally said yes.  This shows that her instincts are good but her decision making may be a bit questionable!  All kidding aside, our family is on the mend because of the amazing relationship I have with my wife.  Thank you Kasie, for being you.

I will spend the rest of my life trying to deserve you, all the while knowing that I never could.