A Fourth Grade Something.

For Ky, today is day +14.

For Lou, it’s week 14.  Fourteen, nearly fifteen, weeks ago, Ky and I went into a hospital because Ky was sick.  She knew he hadn’t felt well.  Early dismissals, a couple doctor’s appointments, some missed school – we didn’t know enough to hide it; as soon as we knew for sure that Ky had Leukemia, we told her – named

lou
Lou’s message for us before we left for Boston.

the thing that was worse than any monster her nightmares had dreamed up – and we held her while she cried.  She immediately wondered if Ky would be okay and what doctors were going to do to help him.  I don’t think Bill and I had any clue what to say to her as Ky looked on from his hospital bed, but – we assured her that of course Ky would be okay…and doctors would do just what they needed to to make it so.  But we had no idea.  We’d only spent a whopping three hours wrapping our minds around the official diagnosis ourselves.  Who could know?  Days turned into a week, a week turned into weeks, one round turned into two, two rounds turned into a bone marrow transplant.  It’s easier to tally what I’ve been there for with Lou over the last several months than it is to tally what I’ve missed.  Even when I was balancing a busy career, I could tally the hits far more readily than the misses.  I did what I could not to miss.  But, this is different.

Today is her first day of school.  She’s a fourth grader.

Last night I called as she was getting ready.  “We still have to put my stuff in my backpack, Mama.”  I always liked to get that done a few days ahead of time – but first, I’d label it all with their names in Sharpie.  I assured her Papa would get that done for her, he’d make sure she was all set – and he will.  “I miss you, Mama.”  I told her I missed her too…and that I couldn’t wait to hear how her first day went.  “I don’t want to go, Mama.”

Summer has provided a lovely respite from a barrage of Ky-related questions from curious peers.  She went to the summer program a little, she spent time with family and friends, she visited Ky as she could.  She went swimming, read books, had adventures…but she did it with some uncertainty and a little nervousness.  Stoic as she is, it’s taken a toll.  At the end of the last school year, she confessed on a teary car ride to the hospital that she was being asked daily if Ky was going to die.  School, she told me, was a place she liked.  She loves learning, loves to read, loves to help.  But now, without the watchful eye a quasi-protective big brother and lots of curious children, she had to find her own way through it.  Her teacher assured me that she did – of course she did.  Her new teacher is lovely – one who knows our family and Ky quite well – he had her last year.  She’ll loop fourth and fifth grade with Lou.  Consistency alongside such a wonderful teacher will be good.

Today I’m not there to do my gal’s hair as she gets ready for school – it’s the one day there wouldn’t have been an elaborate protest about just wanting to wear her hair down.  I haven’t labeled her supplies.  I did manage order a new lunch pail and backpack, but I don’t have the slightest idea what will be in either of them.  By now she’s used to the yin and yang of a Mama-packed snack.  Something kind of unhealthy paired with something pretty healthy.  Parenting Gods, please forgive me for the Handi-snack fake cheese and crackers, which are not whole wheat, because I also provided an organic apple.  I don’t know if that’s how it all works, but – I like to think it keeps balance.

I know Bill will take her outside and get photos of her for me – we’ve always done that.  But, the other half of those photos – dating back to preschool – is 143 miles away.  I just reminded him that she starts fourth grade today.  “Wow.  Where does time go, Mama?”  Oh that I knew, Ky.

We made Lou a little ‘good luck today!’ video from room 612 last night.  Ky’s IV pumps cast a lovely glow on his face and the constant hum of his suction features prominently.  I hope she doesn’t notice all that.  I hope she’s so busy seeing just how much we love her, how much we miss her, that she gets the boost she needs to tackle today…and the next day…and the remaining days until we’re home, when I promise to pack her ‘only makes sense to Mama’ snack again, double-check her backpack, make sure she has clean clothes, and occasionally offer to do her hair, bracing myself for a “No.”, but hoping for a “Yes!”.

I hope fourth grade is your most magical year yet, Lou.  I hope all the courage, grace and gratitude you’ve had the chance to discover and refine this summer serve you well…but I desperately hope you don’t need them in quite the same capacity.  More than anything else, I hope you get to resume being nine again; I hope you get to return to your regularly scheduled childhood.

We’ll love you forever too, Lou.

 

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Perspective, Part One

I returned to the hospital on Sunday after a couple of days in Maine.  Reports from Bill over hidingthe weekend were good.  Ky had resumed eating and, though tired and sleeping a lot, he was doing better.

But when I walked in and looked at Ky, I was taken aback.  It took me a millisecond to realize something was off.  Ky lost the hair on his head exactly ten days after his first chemo treatment began in May, like clockwork – exactly when we were told he would.  But his eyelashes hung on valiantly, until this weekend.

Ky’s eyelashes were gorgeous.  Ridiculously long, they were known to occasionally get in the way of his vision.  From the time he started walking, those eyelashes were a magnet for people’s commentary.  All agreed they were beautiful, but their path to that was a little different.  Some would declare them a total waste on a boy, others commented that they were impressively long, and still others couldn’t get over how beautiful they are.  For my part, I loved them.  Ky could work his eyes and eyelashes in such a way that it would be hard to stay mad, stay strong or firm.  Ky and his eyelashes were a mighty combination for this mama.  They were a piece of what made Ky…Ky.  And now, they’re scarce.  To most, Ky losing that many of his eyelashes is akin to a woman suddenly not wearing mascara; it doesn’t freak a person out necessarily, it just sort of throws them off a bit – makes you think they’re a little more tired.  But to his mama, who has spent the better part of his life being sure of him by looking into his eyes, especially these last few months, it was another bit of Ky that cancer had changed, even temporarily.  I spent last night reminding myself, over and over, “They’re just eyelashes, Binaca…get over it…” and I know it’s true.  The problem is…I can’t.  Or I couldn’t.

Then I walked by a room that seemed to have an abrupt name  change on the door over the weekend.  I didn’t know the little boy – patients here don’t really leave their rooms – but I had spoken with his mama a few times in the kitchen; we’d exchanged smiles at 3 a.m. meetings at the Keurig machine.  It occurred to me late in the day today that I hadn’t seen her at all since I’d been back.  Maybe he’d gone home…or been moved to another floor…but in a place where codes aren’t quiet and crash carts dot the hallways, I find it hard to have faith in that.

Perspective is an awful, beautiful thing.  It’s the delicate balance between being swallowed whole by the grief I feel because my child, the boy who first made me a mama, has cancer (even typing that line brings tears to my eyes – 12 weeks of living this and I still haven’t fully accepted it) – and seeing the beauty in every single victory that he works so hard to claim.  It’s watching him ache for his papa, his sister, his friends, his cats and knowing, without a doubt, that this is where we need to be, this is the work he has to do right now.  Perspective is missing his eyelashes, even temporarily, but knowing that, with or without them, he’s still right here to bat his eyes at me.

Today, perspective feels like the difference between having what you know and knowing what you have.

 

Pressing Start.

tuxedoAt 6:17 p.m. last Wednesday, I gave thoughts and intentions to St. Jude and Mary.  I took a deep breath and looked at Ky and watched as he turned his eyes away from my tears, he wasn’t shocked, but it wasn’t necessarily something he was ready to see either.  Then I said thank you, over and over, to the magical man in the Netherlands who graciously gave a liter and a half of his bone marrow to my son.  I verified with the nurse that I was about to press the correct button, then I pressed start.

I pressed start on a chance to put the nightmare of AML behind us.  AML might always be like that awful neighborhood dog that got off his leash once and bit Ky, hard.  Now, no one in our family dares walk by the metaphorical dog slowly, even if the chain is reinforced and no one thinks the dog will get loose again.    Maybe we’ll get away from it, maybe we won’t.  Our whole family wants to run because we think we can outrun it.  I pressed start to give Ky that chance, to give us that chance.

I pressed start to honor the work that Ky has done thus far:  an early pick-up from school that turned his whole world on its head – he didn’t go home for four weeks that time, two intense rounds of chemo, two pretty gnarly infections, seven plus weeks in the hospital, remission, a bridge chemo program at home to hold him in remission.  He’s put in work.  Damn it, he deserves this chance.  He’s more than earned it.  I pressed start to honor Ky.

I pressed start for a five hour infusion of a substance that, on a table, would look like ketchup – but in a giant bag, hanging on a pole – it takes on a serious mystique.  It was a quiet five hours.  We had very few lights on for most of it.  Nurses warned me it would likely be anti-climactic; they haven’t yet mastered this highly emotional mama.  No bells went off, no music chimed overhead, there was no ticker tape parade.  Ky wore a faux-tuxedo shirt all day and into the night, which made me smile each time I looked at him; it was the perfect shirt for the occasion.  It was silly and Ky-like, but it let me wonder if someday he’ll go to a prom or get married, he’ll wait for his partner at the end of an aisle, ready to make a promise for a long life together.  For now though, there was a pickle boy, his savage mama, and a giant bag of marrow.  How much does hope weigh?  In this case, 3.3 pounds.  But I pressed start for an infinite amount of hope.

I pressed start as were at the base of what we’ll call Mount Awful.  The prize for reaching the summit is engraftment, when the donor marrow settles into its new home and begins making blood of its own in Ky’s body.  Ky’s conditioning regiment is cumulative – the toxic built as we went along.  Fumbling toward awful, we couldn’t have known it would be quite this bad.  In fact, we hadn’t even reached the base of Mount Awful when his cells went in.  When his numbers didn’t dip as quick as I thought they would, the attending physician assured me that the two chemo-therapies were ablative; any fast-growing cell was a target for the duo.  The result of cumulative and ablative are a combination that no one, especially not a child, should experience.  His body is pissed.  Add to that mix a bunch of new cells that, with all the best intentions, are trying to find their place in a whole new world (Ky’s body).  Ky’s body doesn’t entirely trust the new cells to not be up to no good, so – it’s suspicious.  Pissed and suspicious make for tears, his and mine, vomit, mostly his, a high fever, him. and sleepless nights, me.  I pressed start, knowing it will be worse before its better.

I pressed start and dove a little deeper into being a medical mama; a mama who has to walk a delicate line between just wanting to snuggle with my baby and forcing myself to help him negotiate this world.  A mama who can no longer truly hear the dinging of the alarms on his IV – they’re more natural than a television in the background at this point in my life.  Alcohol wipes have become smelling salts for me.  When one of those 2×2 packages is opened, even if I’m in the bathroom showering, I can smell it; something is wrong, they’re accessing his central line.  A mama who chooses to participate in rounds, with Ky’s blessing, so that I can learn as much as possible about what’s going on.  Slowly, I’m picking up their vernacular…and with the confidence of a stone rolling down a hill, no choice but to gather speed, I’m learning to speak their language, enough to watch for trends and provide data that I can, when I can.  I pressed start, he’s counting on me to be his voice.

How did I end up pressing start?  That’s the silver lining; for me, a moment of beauty in this disaster.  Earlier in the day last Wednesday, when we knew Ky’s cells had landed and were being prepared for his body, Colleen asked if Ky wanted to press start on his new marrow – “Lots of kids your age love doing that!”.  Ky looked up at her, over to me, then asked “Can my mama do that?  I want her to press start.”

 

 

 

Mighty

 

“I’m pissed I have to do this, Mama.” Those were Ky’s words on the way to Boston yesterday.  I’m pissed he has to do it too.

For Cappy, the pissed has passed.  He’s here. And he’s doing it. Today was the first day of conditioning, Day -8. His new marrow will be given on Day 0. Between now and then, he has a significant course of high dose chemotherapy and other medications to rid his body of its own marrow and prepare it for the donor cells.

For most of our trip down Interstate 95, we followed a tractor trailer.  On the back of the cab was the word “Blessed”.  I had Cappy take a photo.  If that was a sign, I’d take it.  blessedIt probably chewed up time, but I chose to follow that truck as long as we could.  Who am I to pass a message like that?

For a mama and her guy, who are both incredibly tentative about a big hospital in a big city, we’re okay.  Well, I’m okay because he’s – amazing.  No surprise there, really.  His IV pump is three times the size of the one he hauled around at Maine Med and he has more tubes coming out of it than I can count – but he negotiates a small ‘alley’ between his bedside table and a chair like a pro.  This morning he was asked to work on a list of things that he wanted anyone who entered his room to know/follow:  please make sure Mama is with me when you want to talk to me about something, please ask if I want to talk about home or not because sometimes it makes me really sad, and please limit the number of medical people in my room at one time.  For Cappy, that bit of advocacy is a pretty big deal.  He also asked that he have some way to share his jokes with people who work here as laughing makes him feel better.  (Today’s joke:  Why didn’t the toilet paper cross the road?  It got stuck in a crack – no shortage of bathroom humor with this guy…).

As part of our intake, a nurse asked Cappy if he knew why he was here.  He looked at her and said “…because you’re the best in the country at this and I need that right now.”  I think she was more looking for “I’m here for a bone marrow transplant…”, but – she got Cappy, true to form.

Mighty is the battle; mightier, still, is my boy.