One more

My Dear Simon,

Tomorrow we go for your last round of chemo.  The thought brings tears to my eyes.  It's odd, really, because it's not so much for the reason you'd think.  In a way I feel kind of like you're graduating kindergarten or some such milestone.  Like this is just another sign of you growing up.  Like this is something every kid does.  Don't get me wrong.  I am ready for this to be over.  But at the same time it's been an amazing journey.  You've grown up a lot.  You've gotten several teeth and learned to walk.  And you've amazed me and everyone who's seen you through this.  Dr. Thompson always remarks what an exceptional guy you are.  I believe the word he uses is phenomenal.  Through everything you haven't lost your spirit.  I was so afraid of that in the beginning.  I didn't want you to become afraid of people or turn inward.  Granted, you start crying at the sight of the nurse sometimes and I don't dare let you see the mask.  But you are still the same boy I've grown to love so much.

Through this all, I've repeatedly said that I wish you could understand what's going on.  Tonight I wish you could understand that this is a big time for you and it will all be over so soon.  But here is my real wish for you.  I pray that you forget all the hurt and scared and sick.  I pray that you remember all the love and smiles and waves from nurses.  I pray that you always remember that you beat cancer and you did it so well. 

Tonight at the mall we happened upon some Brobee shoes and I couldn't help but buy them for you.  I justified it to myself (and will with Daddy later tonight) by saying it's your treat for being done with chemo.  I wish I could get you something that is more appropriate.  I wish I could get you what you've earned.  But honestly, I have no idea what that is and even if I did I couldn't afford it.  Maybe we can just call it even when you get to go to nursery in a few weeks and play with other kids and not get shots every day.  It doesn't come close to what you've earned but it's the best I can do right now.

Love,
Mommy

Big Brave Mommy

*Dramatization of actual event*

I got my flu shot today.  HEB was doing them at the hospital.  It's something that's been on my list but I just haven't had time to do.  So today my mommy took me for my shot.  I'm really just getting it for Simon's sake this year.  I hate needles.  Have I ever mentioned that?  And it's been a couple of years since my last shot.  I joked that I wanted Child Life to come.  They're the awesome folks that come when Simon gets his IV put in.  They bring toys and are a great distraction for him.  I took a deep breath and told myself I can do this.  I thought about how many times Simon's been poked in the past 6 months.  It's far too many for me to count.  It didn't hurt too bad.  But I hope he appreciates what I've done for him.  I don't get a shot for just anyone.

A Year Ago

He was such a cute monkey.  I can't believe how he's growing up.

My Monkey

Scary Stuff

Bumps and bruises all up his forehead.

So, Simon was in the hospital last week, again.  Another fever.  Seems he's been in the hospital way more than he's been home the last month and a half.  I think I'd get depressed if I tried to really figure it out.  Anyway, it's really starting to get the better of him, his dad, and me.  But I feel the worst for Simon.  He's beyond frustrated and bored and angry.  I don't blame him one bit.  He's developed a nasty habit for banging his head when he's upset.  He does it in the shopping cart.  He does it in the bath.  He does it in the living room.  And now he's really started doing it in the hospital.  You know that alien from Star Trek in the 90's that had the ridges all up his forehead?  That's what Simon started to look like because he'd just smack his head on the crib all day.  I told everyone that came in.  No one cared in the least except one nurse who said something about his platelets.  He's taken to screaming when nurses come in.  He freaks out if they come near him. 

Sunday night was awful.  He screamed bloody murder.  He arched his back.  He fought with everything in him and could only now and then be comforted by me.  I demanded to see a doctor since I am almost never around when they stop by in the morning.  Blaine and I had had enough of watching our dear boy descend deeper and deeper into his own personal hell.  We got that his white counts were non-existent.  But there comes a time when being in the hospital does more harm than good.  We had definitely reached that point.  I don't think I'd ever met the doctor before.  I was almost hysterical myself.  My boy was hurting himself and no one cared.  No one even bothered to look at him.  This doctor was no different.  "His ANC (white cells) are still zero so he has no way to fight off infection... blah blah blah etc. etc. etc. and so on."  I don't care!  My boy can not take another day in this place.  And neither could the husband or I. 

I left that morning enraged.  I did have a chance to check with the nurse who said his ANC was 10.  But I still had no assurance he'd be able to leave.  It was Halloween.  We had so been looking forward to Trunk or Treat at church which we missed.  And now I had to tell my husband to make sure he took Simon trick or treating at the hospital.  That may well have been his only chance.  It hurt more than I can say to have to leave for work and miss his whole Halloween.  When I got to work our social worker called.  I unloaded on her.  Long story short, I'm not thrilled with a lot of the people at TCH.  The good news is they let Blaine take him home if he promised we'd bring him back if he got a fever again. 

I swore I was leaving work at 6:00.  That didn't work out.  I hurried home and picked up Blaine and Simon and we rushed to Grandma and Grandpa Leavitt's house before Simon got really grumpy.  He was so adorable in his Charlie Brown tshirt.  He had a ghost bag for all his candy.  I can't believe how grown up he seems.  I just love these pictures of him and Blaine outside at the grandparent's house.

Simon, candy is this way.

Trick or Treat!

Mommy and Simon.

The best family portrait we could manage.

Yummy blueberries to go with the candy.

Giving candy to strangers.  This doesn't seem right.