Expectations

It seems to me that the actual act of Chemotherapy  is pretty darn easy.  They access his port one time and all other medicines are administered through that one needle.  Easy Peasy!  It's the side-effects that make it such a nightmare.  For this last Round it was the side-effect of a side-effect that made it so.  The feeding tube being thrown up four times.  By the last time I had snapped.  We were both done.  I put my foot down and bought Caden some time with it out.  And that caused a huge problem.

Caden is old enough to understand things that younger children don't.  However, he's just young enough to not understand some things.  This raised some expectations about how Clinic was going to go today which then delivered a serious blow when things didn't work as predicted.  In Caden's mind, Mom told the Doctor's that he wasn't going to get a tube once, so she can do it again.  She'll fight on my side, we'll get what we want, and all will be good.  Until he got weighed...

There were so many procedures at the beginning that he went without food and water for a few days.  They'd allow a drink here and there between, but it wasn't ever enough.  By the time that he was done with procedures, he'd lost a lot of weight.  On a body Caden's size, that just isn't an option.  Hence the feeding tube.  We finally got him up to 32.4kg (71.4 lbs.) and felt pretty good about our progress.  Round 3 took care of that for us.  With no feeding tube delivering 2,200 calories day and night into his belly, Caden lost 1kg (2.2 lbs.) in two days; bringing him back down to the lowest he's been since arriving in Seattle.  This is 3.4kg away from the cutoff point of the feeding tube and 5kg away from his ideal body mass; a weight he has never hit in his life.  As soon as I saw that number I knew there was no chance of us walking out of that office sans feeding tube.  It was like boulders in my stomach knowing I had to tell him.

Caden spent Thursday worrying about how much he was eating, getting all anxious about the possibility of having it placed again.  He made sure to count every calorie, feeling like he was doing a good job, when it all actuality, he wasn't even close to eating all that he needed.  There was just no way that he was going to be able to do it alone.  As the time grew closer to going to bed, we talked to him about all of the scenarios.  He looked a bit worried, but also had a air of calm about him too.  I learned the hard way what this air was.  It was his expectations.  Something that would get blown to bit with just two words.  I'm sorry...

Dr. Lux talked to Caden about the need for the tube.  Talked about the benefits.  Tried to impress upon him the importance between now, Round 4, Surgery, and Recovery.  Caden just sat on the table crying.  Wiping his sad eyes, and just kind of nodding.  After a few minutes, it because starkly clear that he'd tuned us out.  He was done listening.  Dr. Lux left to go find the nurses.  And the flood gates came.  And the words.  "I don't feel like I was given enough of a chance.  I only got two days to prove to them I could do it.  They weren't even listening to me.  It seemed like you were on Dr. Lux's side."  And with each word my heart fell.  It is the WORST being the sensible parent.  Because, just like Caden, I wanted to whisk him from that room.  Run like mad to take him from the torture we knew was coming.  Ask them to give him just a few more days.  Days that he wasn't getting enough calories, but was the happiest we've seen him in a long, long time.  His food intake was down, but his spirits were soaring.  He thought he'd be able to go home to his friends with his "normal face."  And now that wasn't an option.  I had failed him.  I hadn't fought enough for him.  I wasn't the savior he wanted me to be.  And it killed me.  He thought for sure that I was going to look at them and simply refuse to let them put it in.  And they would cower and give in to me.  But I just couldn't.

On one hand, I see the emotional damage Caden has.  The tears, the begging, the anxiety these last few days have caused.  On the other, I also see my son wasting away.  He may have swollen cheeks from so many stickers being placed and ripped off, but I see the ribs and spine jutting out and feel sick to my stomach.  I also see how hard his body works simply to survive.  The last week before Round 3, he didn't throw up one time, his feeds were going 110% of the time sometimes, and he didn't gain a single ounce.  He lost 2.2 pounds in two days!!  Even when he's sitting down, his body is running a marathon.  He's always been lean, but now he's fighting for his life.  Literally!  And I can't do anything about it.  I walked into that office with a two-edged sword.  One side leaves my son happy and starving, the other side leaves my son fed and hurting.  And I ultimately chose to crush his dreams.  That's not the way that I see it, but the way that he sees it.  And it breaks my heart.

As she was getting ready, tube in hand bringing it closer to his face, he started to really cry.  He begged harder than I've ever seen.  Each time has brought more of my heart to it's ultimate breaking point, each time has made me die a little more watching him suffer.  He finally put his head in his hands and just said, "Mom, PLEASE!"  What do I do?  I am so tired.  I am so broken.  I am so done.  There is no chant running through my head, no "one more round, one more round."  By now I feel numb.  I feel fragile.  I feel like a sponge that absorbs his "My nose hurts just thinking of it." "When will they listen to what I want?" "You didn't fight for me."  I feel myself drying up with each word spoken out of desperation, pain, and sorrow.  I hope I make it to the end.  At first it felt like all would be well after a good night's rest.  I've had plenty of those, it's not feeling better.  I feel like my wound is bleeding out.  And he's the one that has to endure the physical pain.

Being an adult is lame.  Having to be the sensible parent is so draining.  Knowing that your son was disappointed with you today and sees your actions as a betrayal is like a knife to your heart.  He never said anything hateful.  He didn't have to.  It's what he didn't say that hurts the most.

Chemotherapy isn't hard.  Side-effects are hard.