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Heartbroken by his bravery

I'm not sharing this one.  I'm just venting.  

We didn't get any results yet.

Yesterday I got the call I've been procrastinating for a couple weeks.  Max's CT scan.  7:30 a.m. today.  I tried to reschedule, but apparently it's all a very intricate dance of appointments and doctors. If I was to reschedule, the whole thing would fall like a giant Jenga game.  I knew Kelly couldn't make it.  He's working every day to make up for the week we'll be gone to Disney.  I've been dreading this appointment and I was going to do it alone.  Well.. with Jameson in tow as well.  

I'm pretty sure for adults, a CT scan is easy.  For kids, you have to drink 3 glasses of Gatorade laced with some kind of "contrast" every half hour.  So here I am coaxing Max into doing these shooters, and Jameson helpfully spills a cup on the floor.  He's a climber now.  Not a very good one, but ambitious nonetheless.  He thinks he can jump off low edges too, but what he actually does is bend his knees, "jump" into a standing position and sort of lean forward into a face-plant as though his feet were piano-hinged to the edge.  That'll come into play later.

The nurse comes in and starts slapping his little wrist looking for the best vein.  She asks how he is with needles.  I tell her that he's a pro.  She asks if I need to hold him down.  I say no.  But he wants to sit in my lap anyway.  He asks the nurse if he can insert the needle himself. I laugh because by now, he just about probably could.  We get into position and I cover his eyes so he doesn't make me a liar by jumping in anticipation of the poke.  She warns me, "He can't move.."  He knows it's coming and starts to cry.  The nurse is holding his right hand, so he balls his left hand into a fist and it tenses up until it's vibrating.  She pokes him and he screams through clenched teeth, fist still shaking, but his right hand doesn't move.  His tiny little body is protesting in this eerily mature and controlled way.  He's not thrashing.  He's not recoiling.  He's completely in control of what his right arm is doing.  She pushes and pulls the needle for a little over 5 minutes.  That doesn't sound very long, but if you had to watch him... it was an eternity in Hell.  And to no avail.  No blood.  

She wraps up the right hand and starts slapping the left.  Same thing all over again.  Exactly the same.  After a little over 5 minutes, no blood.  Are his veins shot?  Did the chemo do this?  Is this going to be a problem indefinitely?  What are we going to do?  

She ultimately calls "the vein team".  They use an ultrasound to find the vein.  So there will be at least one more poke.  Great.  Max isn't terrified of needles yet, but he might be after this.  

They cart us to this special room.  Three guys hover over Max as I caress his forehead.  Jameson is asleep in his stroller, thankfully.  They ask me if he's a fighter.  I almost cry when I tell them no.  Obviously, they don't believe me.  All kids thrash and fight.  All kids panic and freak out.  Max can't possibly be different.  They ultrasound him, spray him with the numbing spray for the third time and... poke. One guys is holding Max's shoulder, another holds his hand while the third wiggles the needle around for another 5 minutes.  Max tenses.  His eyes squeeze shut.  He screams through clenched teeth and his left hand balls into a shaking fist.. but his right arm doesn't move. The two prison guards slowly let go, astonished.  "Wow.  He's really good!"  Wiggle, wiggle. Yeah.  He's really good. Max hitches through his tears and says, "I can take it much longer!!"  A couple more wiggles and.. no blood.  They let his arm flop.  After another minute, blood came.  I think I didn't breathe until that moment.   

Apparently he has spasmodic veins.  As soon as you poke, they recoil and constrict.  That's fantastic. 

It's another hour before we get to the CT machine.  The kids have been there 4 hours with no food or games.  They both have had it.  
Now we have to go upstairs to the next tower and get blood drawn.  Max is excited to be back on the cancer floor.  He knows this place.  Jameson promptly climbs up onto a chair and piano-hinges onto his face in front of everyone.  I'd be embarrassed at all the disapproving glances, but it's been a long day.  Tape up and play hurt, kid.  You're fine.  

I haven't been to TCH in three months.  I physically cannot look at the window to the ER because now that I'm no longer desensitized with weekly visits, all I can think of is when we went there that very first day.  I was scared and in shock.  My baby had cancer and all these other parents were sitting there annoyed because they'd been waiting for hours with a sick baby and had no idea how lucky they were.  I hated them all..  It was the worst day of my life.. right there through that window.  And it cut me as deeply as if it were yesterday.  

But these moments where my baby is extraordinary... when he's so brave and mature beyond his years and at the same time still a scared little boy...  It's harder, I think, than if he wasn't.  I'm angry and heartbroken that life threw my baby a cactus and he had to make a beautiful rare flower from it.  It kills me.  

We don't find out the results for another week.  Please keep him in your prayers and good healing thoughts.  He doesn't need to be any tougher.  He doesn't need to be any more extraordinary.  He just deserves to be a healthy, bratty, snotty little kid.  No more cacti or flowers.  No more lemons or lemonade.  Most of all, no more pokes for a while.  

Thanks for all your prayers.

Heather, Kelly, Supermax, Alex, Austin and Jameson Duke.