Sunday, April 14, 2013

Following Up

We went for Gage's first follow-up appointment at CHOP.  It was much harder than I thought it would be.  Wait, let me re-phrase.  The appointment went great, but the whole being there was tough...very tough.

I've only driven myself to CHOP twice so far.  (I barely left the hospital when we were there for two weeks, necessarily.)  The first time I got hopelessly lost in Center City Philly, and before you ask...YES, I have GPS.  Yes, I do.  But it was no help at all.  It would tell me to turn, and then say 'recalculating,' and then tell me to turn again, and then say 'recalculating.'  We were stuck in some sort of twisted cycle of abuse, me and the GPS lady.  I was following her commands, but it was never enough.  It was never enough.

This past week I went armed with very specific directions to avoid getting lost again.  But what I didn't count on was my power steering failing.  Oh, that happened.  It happened majorly.  My biceps will never be the same.  The power steering kept going in and out - sometimes I could outsmart it by keying the car off and then on again - sometimes this worked.  And sometimes it didn't.  But sometimes I had power steering.  And sometimes I didn't.  The whole way there, and the whole way home.  (We have since gotten this fixed.)

By the time I got to CHOP (and parked sans power steering, which involved a lot of sweat and cursing), I was already breathing a little hard.  And then we walked in, and my heart caught in my throat.  Because this....  I spent two weeks trying to get back to normal life, but this....  Seeing the hospital again....

I hated knowing my way around.  I HATED it.  I wanted the place to be a maze.  I wanted to have to ask for directions.  It was all too familiar.

And Gage...he's doing so well, he's doing so awesome.  But he's not himself.  He's on high-dose steroids, and this robs him of his true personality to a not-minor degree.  He is impulsive, and he is wildly energetic, and he is hungry.  So very hungry.  He is doing amazing, with everything, but he is not himself.  We checked into the doctor's office, and we didn't wait long before they saw us.

"Gage!" the doctor smiled, high-fiving him.  "It's so nice to see you out of the hospital!"

I knew what he meant, but I wanted to correct him: "Actually, we're in the hospital."

I imagined him staring at me, his smile growing slightly vacant.  "That's where we are right now," I would point out.  "We're in the hospital."  Because, you know, you can tell.  Don't believe me?  Look around you.

Instead, wisely, I think, I nodded mutely.

The check-up was so fast, faster than I'd dared hope.  They gave us instructions to go upstairs for bloodwork, and said they'd see us in two weeks.

"So, after the bloodwork," I said, "We can leave?"

"Yes," the resident and the doctor said, smiling.  "That's all we need."

"So after that.  We can just...go?"

I get a text from a friend asking about a double-date.  What do you call it when it's a double-date of families?  Two couples, and five kids, amongst you?  An outing?

Can't that day, I write back.  Gage has chemo.

Wait, what?



Tonight I sent a request for a room at the Ronald McDonald House in Philly.  His appointment next week...we're supposed to be there at eight in the morning.  I cannot fathom how to get from here to there (keep in mind my past two past two drives...have been nightmarish ones) by eight.

So I'm handling this.  I'm sending the online request form, and I've filled out all of the information, and I'm reflecting on how glad I am that I have always contributed to this particular charity, ever since I was young.

When I was maybe 13 I used to go with a friend to a hospital in Delaware.  My friend had a spinal condition that necessitated regular visits to a specialist in a hospital, and she sometimes asked me to come with.  I never wondered at my parents' immediate allowance, although in retrospect it was somewhat out of character for them to say "Yes, you may skip school to go with your friend to the doctor."  I never remember them hesitating for a second, which, now that I think about it, was really very cool of them.  Over a few years I spent several overnights with this friend and her mom and her little sister at the Ronald McDonald House near her hospital.

I have fond memories of those overnights, feeling special and cared for and entertained.  As soon as I started working I made it a point to contribute to Ronald McDonald House Charities, and continue to do so to this day.  So, of course, I think of them when I can't figure out how I am going to make it to Philly by 8:00 AM (with all of my faculties intact).

But when I go to actually fill out the form online....

My heart starts up again, and my throat tightens.

Because this is my kid.  And I'm not seeing this through the eyes of a young teenager, who has the everyday perspective to know that shit happens, and friends weather storms, and they make it through to the other side.

I see this from the perspective that this is my kid.

My kid is not okay.

And that....  That.  Is really, really scary.

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