Friday, July 12, 2013

Ever Crawl Out of a Cave?

How I'm feeling, these days, is like I'm crawling out of a cave.  I feel like I've been hibernating, in a dark, chilly, mossy place, and I'm just beginning to get confident enough to sneak my face into the sunshine and test the air outside.  But this is in no way a romantic or even a pleasant image; I'm still patchy with dirt, and my hair's a mess.

Really, I hope that this upswing continues.  Because, you know.  It's been hard.

Lately...things have been SO MUCH better.  Things have been freaking fantastic, compared to February of this year.  Compared to March of this year.  Compared to April and May.  Things have been great.  But I'm still a little flinchy and nervy and afraid of the big wide world.

Gage is doing awesome.  He's fit and healthy, and he left the hospital at 42 pounds and quickly ate his way to 50, where he has remained.  He's never been 50 pounds before, and it looks good on him.  He's been riding his bike and running around and climbing trees and bugging the heck out of his sisters, all things I (daringly) looked forward to when he was in the hospital.

He's been on Prednisone for four months, and will likely have three more months of it.  They started with quite a high dose, and have been slowly weaning him down.  He is on daily blood pressure medication, and after several weeks of adjustment the medicine is completely controlling his blood pressure to high-normal (down from unacceptably high).  He had four infusions of a chemotherapy drug and is now in clinical remission from the Vasculitis.  We go back to CHOP in a few days (we've been there about every two to three weeks since March) and they will start him on a new drug at that time - an oral chemo med that he will be on "indefinitely."

The next hurdle will be watching and waiting, and seeing whether remission continues once the fourth dose of chemo is out of his system (which should be any day now).

Anyway.  I can't say enough good things about CHOP.  Really, I can't.

Last month we were getting breakfast at the cafeteria (we arrived a little early for his appointment - never can judge how traffic will be driving into Philly) and I looked over to see Rebecca, the pastoral care person who came to Gage's room and sat with me so many days in March.  "Hey!" I said, pleased.  "Hi!" she returned, enveloping me in a big hug.  She looked around.  "Where's Gage?"

"Having breakfast," I said.  "Come sit with us!"  

So she did.  We ate breakfast together, me, my mom, Gage and Rebecca, and she commented on how good he looked, how healthy and what a good color.  (He was super-pale in the hospital; his bone marrow wasn't working properly to create enough blood for his body.)

I introduced Rebecca to my mom.  "Rebecca was such a comfort to me in the hospital," I said.  The memories came flooding back, me confused and angry and unhappy, with only the loosest control over myself.  Crying and urgent and sad.  Rebecca's shoulder had been my pillow, for many hours.  Her shirt had been my handkerchief.  "Sorry about all that," I wanted to say.  "Sorry I was a maniac."  But of course I didn't need to.  She knew, and she was happy to see us well.

"No pasta today," Rebecca observed, grinning.  Gage had been on a strict diet while inpatient, with very limited sodium and potassium.  It was hard to feed him something he'd eat within the restrictions (he wasn't at all hungry then) and he had plain oiled pasta...frequently.

After breakfast, on our way up to the oncology clinic (where the doctors would assure me once again about his *other* issue, the mass in his liver, that "We get all the bumps and lumps that no one can identify.  We're almost positive that it's not cancer.") we waited for an elevator with Kate, the art therapist that had visited Gage at least four times during our stay, for at least a half hour each time.  It was the same all over again.  "Hey!"  "Oh my God!  Hi!  Gage looks great!"  

And again with the memories.  Gage carefully painting a wooden box before decorating it with plastic jewels, a gift for his sisters.  Gage drawing a picture of himself, complete with hospital pajamas, while I leaned over to take a few markers for myself.  Kate the Art Therapist subtly moved the markers closer to me.  She also pushed a stack of line drawings across the table, and, without looking into my eyes, murmured, "These pictures are popular with parents."  

I almost laughed, almost said, "But I'm not the one you need to provide art therapy to!"  But then one of the pictures caught my eye and, without saying a word, I slid it over and began to color.

"Sorry about all that," I wanted to say.  But Kate knew.  She got it.

The doctor we saw in oncology was the same one who had seen us while Gage was inpatient.  (Of course she was, because that's the kind of day I was having.)  And, seeing her, more memories surfaced.  She was so patient with me, when no one could say what the liver mass was, when we were all anxious to try to identify it.  I remember showed her an image on my laptop, and saying, "Granted, I am not a radiologist.  But have you considered this?"  She smiled, not at all mockingly, but maybe a little sympathetically.  "Yes," she said, patient and kind.  "We've considered that."  "Okay," I slowly closed my laptop.  "Okay," I said again.  "I'll, maybe...stop looking."  "It's okay," she said.

Now we were seeing her again, months later.  "You look better!" she said to Gage.  "You look better too!" she said to me.

Sorry I was a maniac.

Gage's main doctor now, the nephrologist (kidney doctor) who correctly diagnosed Gage's auto-immune disease and performed the kidney biopsy, I'll refer to as Dr. C.  He's amazing, and I love him.  I have a kind of crush on him.  But the first time I met him, the first time I really met him, I had a sort of a breakdown.  

In the beginning of Gage's hospital stay we saw so many doctors, nurses and residents that it was completely impossible to remember everyone (we had multiple teams of doctors, including general pediatrics, nephrology, oncology, gastro-intestinal, infectious diseases and who knows what else).  So I'm sure that I met Dr. C. before I remember meeting him.  But once they started to narrow down Gage's condition we saw far fewer doctors, until we settled on just the ones who were right to deal with exactly what was going on.

The day I really met Dr. C. was a Bad Day.  I was just waking up, as was Gage.  The attending general pediatrician had just come into the room to introduce himself for the first time.  I was confused and sleepy and sitting awkwardly in my pajamas on the couch-turned-bed.  Dr. C. came in and said, "I think we know what it is, we need to do a kidney biopsy."  I remember looking up, sitting on that couch with my bedsheets crumpled and feeling completely inappropriate having not yet even brushed my teeth, and there were two doctors, two residents, and Gage's current nurse all standing in a half-circle, looking at me.  I started to cry.

Rachel, Gage's nurse on that day, watched me, her eyes widening.  Barely a moment lapsed before she took a step forward, lifting her arms and ushering everyone out of the room.  "Can you all come back in about an hour?" she asked, her voice strong and confident.  "This isn't a good time for us."

"Okay," the doctors agreed.  And they left.

Rachel called another nurse into the room and asked that she entertain Gage for a while.  "Come on," she took my arm.  "We're going to get a cup of coffee."

Rachel took me to a lounge and pressed a hot cup into my hand.  I sat on the couch and cried for a few minutes, and she sat with me and allowed it, even encouraged it.  Then she said, "You're doing amazing."

"I'm a mess," I said.

"No, you're doing awesome.  I don't even know how you're keeping it together.  This is a really scary situation, and you're doing awesome.  In front of him, where it matters, you're doing amazing."

"It's just--" I stumbled over my words.  "It's so hard.  And then there are kids here, I see kids here who are so sick.  Kids who are really, really sick, and I feel like I should just be able to handle this--"

"No, none of that," she cut me off.  "This is your kid."

Dr. C. came back later, and talked to me again about the kidney biopsy.  And I expected him to treat me as though I was delicate...I thought he would tiptoe and be quick and be wary of my tenuous emotional state.

But instead, he invited me in to watch the biopsy.  I immediately agreed, and when I later learned that not many doctors were willing to have parents in to watch biopsies I knew that he was taking a chance on me, and I started to kind of love him.

And last month, when we were there for Gage's appointments, Dr. C. came into the office, said, "What's up, Gage?" and sat down heavily in a chair next to my mom, slumping a little to get comfortable.  And he smiled into my son's eyes and he said, "How's summer been treating you?"

Sorry about all that, Dr. C.

Things are starting to normalize.  We're so far from where we were.

The sun is shining and I'm stretching my joints, testing the air and shaking the stiffness out of my body. I feel ready to come out of hiding.  My kid...he's okay.  Nobody's perfect...we all have issues.  He's well, today, and I am accepting a new normal.  Yes, he'll have this forever.  Yes, we'll always have to monitor him, and he will probably have future hospital stays because of his disease.  But right now (right now) he's laughing on the couch with his Dad, and he's strong and smiling and hungry, and I'll take it.

I'll blink, hesitant of the bright, bright light, but I'll move forward with confidence.

I'll take it.

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