Abba Father

I've been wanting to write something for a while.  Partially for all you who have held us up so strong, and--truthfully--partially for myself.  It's cathartic to put words down.  But then I feel selfish, or the words just aren't coming.  And I don't just want to share my sorrow.  What fun is that?!?!  But sorrow is what I've felt, and if Inside Out has taught me anything it's that Sadness is okay.

Isaac doesn't deserve this.

He didn't deserve the tumor.  He didn't deserve the loss of a kidney.  And he surely doesn't deserve 25 weeks of chemotherapy.  This kid has laughed and played through so much and there's still a long road.  

So how'd we get to this point?  From the surgery on it just kept feeling like we received good news after good news.  The tumor was small!  The histology was favorable!  His swelling was going down!  We had crossed everything off of the list except one last genetic test.  This one only had a 10% chance of going the wrong way.  We were in the clear, right? Thursday night was spent wrestling for the first time since the surgery.  I kept trying to be gentle and he'd just throw himself at me.  After 15 minutes of tickles and getting HULK SMASHed the wrestling turned into a pillow fight.  Both Isaac and Leah kept coming and coming and coming.  Pretty soon I was letting them have it.  The giggles and laughter did wonders for my soul.  Beating up little kids normally is always a blast, but this was freeing.

The doctor's tested for Loss of Heterezygousity (LoH) in cancer cells.  Even in cancer cells there are still tumor suppressor genes of some sort.  On the 1st and 16th chromosomes of the Wilms' Tumors (maybe all tumors, not sure) there is a part of the DNA that helps control the rapid reproduction of the cells.  Depending on who you talk to and what you read LoH can happen in 10-20% of Wilms' Tumors.  The genes are missing for some reason or another.  When missing, the cells can grow faster, metastasize easier, and have around a 3x higher mortality rate.

When we left the hospital we left with the hope that only around 15% of kids test positive for LoH.  We knew it was foolish to get our hopes up, but at the same time how are we not supposed to?  We spent all week in this mystical time of knowing that we had encountered cancer for around 3 weeks and it was gone.  Those three weeks sucked, but the cancer was gone and our son was spared.  Melissa got the call at 3:00 on Friday (the 13th--just realized that) that he tested positive for LoH and that we'd need chemo.  She and the doctor talked for two minutes before Melissa had to hang up.  The news crushed us.  I called the doctor back and had a little longer conversation.

"Hello Mr. Doctor.  I've got some stupid questions but I have to ask.  What are the chances that this is a false positive?"

"There's no stupid questions, but slim to none, they tested both chromosomes and both came back negative."

"Yeah, figured as much.  Stupider question.  What if we deny the chemo?"

"Well Mr. Martin...it's not worth it.  The risks greatly outweigh the minor toxicity of the drugs we'd give him.  And...we'd probably take you to court to make him take it."  

OKAY OKAY.  I get it.  Stupid questions!

I came home and curled up in the darkness of our bedroom and cried.  Since then, my wife and I have talked and sat in silence.  At one point she asked me a question and it has stuck with me.  She asked, "Do you begrudge the hope we were given for those 7 days?"  My initial reaction was "Absolutely!"  But I'm not so sure anymore.  I think it would have been easier if all along I'd known that chemo was the path through the forest.  Yet I think I would have somehow trivialized it more.  I think I would have just known it to be the path and not near the trial that our family faces.  And I think the temptation to do it on my own and plow through the problem would have beat the utter desperation of needing to lean on Abba.

So here we are.  We'll shotgun blast the cells in Isaac's body for the next 6 months to try to avoid cancer coming back.  We'll trade 25 weeks for the rest of his life.  

I want this to end on a positive note, but I sense most of you can sense my melancholy.  So this is what I've got.  Sadness is okay.  We will continue to listen for that still, small voice.  We'll do our best to follow when He speaks.  We'll continue to groan deep in our hearts for the safety and healing of our son.  And we'll rejoice in the darkness for Abba Father is near.