“Otherwise” by Jane Kenyon

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

 

Four years and one day ago, I told Ky we would do this one thing, one day at a time.  Today, it’s been 1,461 days.  Four years and a day.

Four years and a day since Ky asked his oncologist in the middle of the emergency room at Maine Med if the cancer would kill him.  It was a hard question; I loved and hated that he had enough courage to ask.  Dr. Weiss, having only known him for a total of ten minutes at that point, said “We are going to do everything we can so that does not happen.”  I loved and hated that he had enough courage to answer.

Four years and a day since Ky pointed the hard question cannon directly at me and said “How will I get thru this?”  I gave him the first collection of words my brain and mouth could collect into a semi-sentence:  one thing, one day at a time.

Beginning May 18th, my social media becomes an alley of anniversaries.  It’s an alternately well-lit and completely dark alley; there are things I remember so well that they might as well have been moments ago, while there are other things I remember only because my words or a photo tell me that it happened.  Memory is funny like that, and, funnier still, is that the edges of Anniversary Alley feel sharper some years than they do others.

I realize that there is luxury in memory.  I don’t have to live in fear that I’m going to open something and find a memory that I can’t escape from by hugging him.  Ky is here.  I can put my arm out and be sure of him.  Tonight as I write, I’m wearing a flannel of his that is huge on me, but won’t fit him for much longer.  He’s growing.  For others whose own footsteps wore a similar path along the hallways of Maine Medical Center and Boston Children’s Hospital, this is not the case. Tonight I’ll tell him good night and I love him and he’ll respond that he loves me too; Jane Kenyon reminds me it could have been otherwise.

 

In late July, Ky and I met with a new oncologist.  We’d known for a while that his care was going to be transferred from Dr. Weiss, the pediatric oncologist who had been our steady from literally the first moments of Ky’s diagnosis.  The separation was bittersweet.  Ky loves Dr. Weiss.  I love Dr. Weiss.  But leaving his watchful eye meant something special.  Ky’s care was being handed over to the survivorship side of Maine Children’s Cancer Program.  This was the day I had waited for since the moment we found out Ky had leukemia.

I remember, shortly after returning home from Ky’s transplant in Boston, calling his doctor there to go over an odd lab report.  One of his levels was off and, for the life of me, I couldn’t stop thinking about it.  I worried it was the first marker of relapse, the first sign that, in the dark recesses of his body, one little cell waited out the chemo.  The doctor reassured me that things were okay, that a relapse wouldn’t look like that, told me to try to focus on the child in front of me, not the numbers; he would worry about those.  “When can I breathe again?” I asked him.  It was a serious question.  I remember the silence as he drew a breath, then the crackle as he exhaled, “Good question.  If he makes it to the three year anniversary of his transplant without issue, you can take a breath.  But also, in my experience, you’ll never totally exhale.  That isn’t how it works for the parents of pediatric patients.”  I sat on the bathroom floor, tracing the design on the vinyl flooring with my finger.  Three years and never.  The countdown began that day.

On that late July day, we sat in a room at MCCP.  We were only a few weeks from the three year anniversary.  A nurse reviewed Ky’s pertinent medical information with us.  We had always had access to social workers during Ky’s inpatient and outpatient work with MCCP, but Ky rarely engaged unless he was sharing something with them that he wanted to do for other kids.  That day, though, for reasons I may never understand, he engaged with the social worker.  She marveled at his strength and asked him what it meant to him to be a cancer survivor.  At that, my eyes filled with tears.  I tried not to look up.  I didn’t want him to see that or feel the weight of my emotion.   I heard his voice begin “To me, it was just an experience I went through.  I don’t think it stuck to me like it did other people.”  At that, our eyes met.

On the way home, I asked Ky more about the question the social worker asked.  He looked out the window and said “I didn’t do anything, Mama.  I laid in a hospital bed.  The nurses, the doctors, the medicine…that’s what did it.  I just laid there.  I didn’t fight a battle.  I waited for science to help me.  Science fought the battle.”  His answer was so practical it moved me to immediate frustration.  “Part of that is true, Ky.  Nurses, doctors, and medicine did part of your healing.  But your spirit – that had to be strong, too.  You had to believe in your nurses and doctors and medicine, but you also had to believe in you.  It’s more than science.”  He remained unconvinced.

On August 17, we low-key celebrated the third anniversary of his transplant.  I let him sleep in and, when I heard him stirring, I went in and wished him a happy third birthday.  He smiled and rolled out of bed, into the day ahead.  I took stock of him all day.  Three years.  Here we were.  It stuck to me.

Today marks the three year anniversary of our return home from Boston.  Three years.  And now, forward to never.

Cheers to you, Cappy – my boy who believes in science.  Love, your mama – who will always believe in you.

“Let us run with endurance the race that is set before us.” Hebrews 12:1

“It takes a night to make it dawn
And it takes a day to make you yawn, brother
And it takes some old to make you young
It takes some cold to know the sun
It takes the one to have the other…”

-Jason Mraz, “Life is Wonderful”

 

It was too early to feel anything and I was sorely under caffeinated for the task in front of me…but there I was, feeling it all with no coffee life preserver.  I took a chance and slid my hand over to Ky’s leg, under his own hand.  “What, Mama?”  It wasn’t too early for teenage angst and grump, I guess.  “I love you…”  “Mama…”  “No, I know.  I’m just really proud of you, excited for you.”  We hadn’t taken a traditional first day of school photo, instead Ky snapped a selfie of us on our drive.  Unconventional and silly as it seems, it was perfect.

We pulled up to the middle school and parked.  There was a moment of quiet before I gathered up a “Here we go…”, less an exclamation and more a statement of fact.  This, his return to school, is what he has wanted since the day I picked him up from 5th grade and drove him to Maine Medical Center.  May 18, 2016.  So, we were ready.  So, were we ready?

There is a lot from the fifteen months that I truly cannot remember.  It’s frightening sometimes, comforting others.  One moment I cannot forget is sitting in a chair in Kyan’s hospital room in Boston during last year’s first day of school.  It was an absolutely awful day of social media for me.  It took all I had to “like” posts from my Facebook circle – beautiful children, rosy-cheeked, hair combed, ready to start fresh with a new year.  But how could I not like them?  Of course I was happy to see healthy, amazing kids doing exactly what kids should do in the fall.  But, three hours away, without me, Lou’s was having a first day of fourth grade…and three feet away, Cappy lay nearly motionless, unable to eat due to complications from chemo, and puffy from a plethora of steroids.  Where was his fresh start?  Where was the childhood he was supposed to have?  I ached for the simplicity of a battle over bedtime or of a zillion reminders to please brush his teeth.

As I’ve often done, I counted steps, this time from the parking lot to the front doors of Lake Region Middle School.  I wondered how fast I could run from my Jeep into the main office, in the event he ever needed me.  I looked around, all kinds of activity that felt very familiar to a version of me from years ago; I spent a handful of years as an 8th grade English teacher.  Instead of seeing it as a hive of activity and hope and fun, I wondered about germs, who was up-to-date on vaccinations, and if I could trust these children to be kind to Cappy.  I was awash in worry.  And then I saw his face.  He was a little lost and kind of overwhelmed, but the corners of his mouth were finding a way toward a smile.  With the help of a school secretary, we found his homeroom and, I think, a homeroom teacher that will be perfect for him.  He walked in without much more than a “Bye, Mama…” and a quiet “I love you.”.  Though I tried not to alarm his teacher, I likely overwhelmed her with some key details that might matter, even on day one.  Teacher me was mortified, Mama me knew it had to be done.

When I got home last night, I asked about his day.  He raved about his homeroom teacher.  His locker is a next-level labyrinth which appears to only respond to the wisdom of his friend Avery.   Some kids are really tall.  Some aren’t.  The more he talked, the more I cried.  By all accounts, it was a magically average day.  I couldn’t have asked for more; it was the stuff of my dreams.

When I woke him up for school this morning, he grumbled about how early we needed to be up.  “You know,” he mumbled as he walked to the bathroom, “the nurses did 6 a.m. vitals but they were always nice enough to let me sleep.  Can you get me ready for school without waking me up?”

Tomorrow is September 1.  Tomorrow it will, once again, be Childhood Cancer Awareness month.  Last year, I wrote about what that meant in the context of where we were last year.  This year, I write about it in the context of where we are now.  I still hate cancer.  As often as I am able, I work to find the silver lining, but that doesn’t change the fact that I hate it.  I hate that I have a small circle of other parents who I know that didn’t get first day of school photos yesterday, who ache for a magically average day.  I see you; I’m so sorry.

I promised last year that we would spend time paying it forward in terms of the support and love we received when we were able to do so.  And we will.  There are several organizations that go above and beyond to support children in situations such as the one we found ourselves in.  I would be happy to share those with you if you are care to give time, money, or some other donation.

I wish you a magically average September…and the wisdom to know it is so.

 

 

 

 

In a rare moment of vulnerability, I shared with someone yesterday that I’ve been afraid to write.  In case the Universe had forgotten about us, in case we were due to be left alone for a while, I didn’t want to raise my hand and remind it that we were still here, still fighting.  What good comes of remembering and reminding?

On February 17th at 6:17 p.m., Ky had officially been in remission for six months post bone marrow transplant.  I walked to him at his computer desk as the clock ticked from 6:16 to 6:17 and kissed him on his head, just as I had after pressing start.  “Mama….”  I couldn’t help it.  6 months. 

Three weeks earlier, we’d been given permission from Ky’s Boston team to have his central line removed.  They had started weaning him off the major immunosuppressant that kept his body from attacking the donor marrow.  As a result of that, he doesn’t require labs as often and since that’s really the only purpose his line has served in a while, it was time.

Except, it wasn’t.  Ky wasn’t ready.  Since May, Ky has had a central line.  That line was the way most things medical and miracle went from the outside world into Ky’s body.  It sent chemo into his system, medicine to combat the side effects of the chemo, nutrition when he couldn’t eat, and, of course, his donor marrow.  When the line was first placed, he wanted to know immediately when it could come out.  Cancer makes you look for strange security blankets and for Ky, it was one.   In a weird way, it was for me too.  It was a way to measure time.  Every 12 hours we flushed it, Heparinized it, and capped it off.  Every 4 days we changed his caps.  Every few days (though it should have been less frequent), we changed the dressing.  During a dressing change a couple of weeks ago, he looked up and said “When can I get this out?”.  Of course it was a Saturday, so there was no one to call.  Monday arrived and so did a huge snowstorm, so I called on Tuesday.  And this morning, Ky’s line was removed.

We drove away from Maine Medical Center just before noon, we’d only been there three hours.  I watched as the nurse accessed his line the last time, a little teary that I wouldn’t be the last one to do it.  I reminded myself that is how it’s supposed to be – leave the medical things to the medical professionals, leave the mama-ing to the mama.

While we were there, we had two amazing visitors who came to see us in the surgery unit.  The trek from the unit where Ky spent his summer to the basement Maine Med involves several floors and two absurdly slow elevators.  But, two of his favorite nurses were undeterred.  Wendy arrived first and Ky’s grin lit my whole soul up.  Wendy was, without a doubt, Ky’s partner in crime.  No one was safe when the two of them were armed with Nerf guns or silly string.  She hadn’t seen Ky since just before we went into transplant.  It was on Wendy’s shift that we had to shave Ky’s head…and now he was in front of her with a beautiful head of baby soft hair.  Shortly after Wendy left, Misty arrived.  Misty sat with us on a shift right before the 4th of July and watched fireworks for a few minutes.  She was over Ky’s shoulder as I took one of my favorite pictures of him, his face aglow in the light.  We didn’t know it at the time, but a really rough night waited for us.  She knew something was up before she transferred our care…and she made sure he was on their radar.  Two doctors had to take a bit of a backseat for our reunions with these two incredible women.  Neither seemed to mind.  As Misty hugged Ky and rubbed his head, I leaned over to one of the doctors and explained that he was pretty close to some of his nurses – there was a look in his eye that let me know I didn’t need to explain.  He understood.

Ky’s procedure was fairly quick and straightforward.  As I’d done so many times before, I walked him into the operating room and told him that I loved him repeatedly as he counted up to ten, resisting the anesthesia for as long as he could.  His hand feels impossibly heavy in those first moments when he goes under.  I kissed his forehead and thanked the team, then returned to the waiting room to wait.  Twenty four minutes later, his surgeon appeared.  He explained that all went well and that they’d be out to bring me to him in just a few minutes.  “Congratulations,” he said as he shook my hand, “today is a big day.”  When Ky and I were reunited in recovery, there was a cake waiting for us from the hospital.  Today was a big day.

On our ride home, we listened to NPR.  Among the top stories at noon was Donald Trump and the way he plans to address the Affordable Care Act.  They cut to a clip of him saying “Nobody knew that health care could be so complicated.”  It was ironic, at best.  I thought about the last nine months.  I thought about the care we (used intentionally) had received from social workers, housekeepers, a man named Tom at our medical supply company who has sent all sorts of medical things to our house, other families, our community, doctors, nursing assistants, and, of course, our beloved nurses.  I think they know just how complicated it is.

But then there’s also the least complicated part.  The best hug I’ve had in a long, long while came right after surgery – a boy and his mama, nothing medical in between.

Within moments of seeing me, he asked when we could go home.  He wanted the blood pressure monitor off and could they please take out his IV?  Why, he wondered, did they have him hooked up to all that stuff?

We’re still here, Universe.  We’re still fighting.

A couple of weeks ago, Lou got into my car at backdoor pick up with a telling furrow on her brow.  I braced myself – when she has a rough day, I think she starts a running checklist of all that has gone wrong in her mind and saves it up, only to regurgitate it into my lap upon first sight of me.  “What’s the matter, Lou?”.

As it turned out, someone told her at recess that Santa isn’t real.  But Lou?  She’s a believer, so she settled on “He is too!”.  In the quiet of my Jeep, though, she wondered.  “Is he real, Mama?”  I could hear it in her voice.  Part curious, part nervous, part sad.  “I told him, Mama – I told him Santa *is* real and he shouldn’t try to ruin Christmas.”  2016 has been a year and we’ve let go of a lot, but damn it, Santa was not going, not this year.  “Santa is real, Lou.  He’s kindness and wonder and magic, all wrapped into one.”

Later that night, as I tucked her in, Lou started crying.  “Santa can’t come, Mama.”  Lou isn’t one to let things go…I can’t imagine where she might get that from.  “Why not?”  I was ready for just about anything:  because he isn’t real, because we don’t have a chimney, because….just about anything…except for the one thing she said.  “Santa can’t come because he’ll be in all the other houses first.  He’ll be covered in germs and he’ll make Ky sick.  Santa can’t come, Mama.”  There it was.

Lou is 9.  For as much as they fight – and wow, can they fight – her brother is her hero.  It was a long summer of infrequent visits.  She missed him.  He missed her.  Each week after Ky’s doctor’s appointment, Lou finds a way to quietly ask how things went.  Is he okay?  Did anything change?  What medicine is different this week?  She never does it in front of him, instead she waits for a quiet moment when I’m starting laundry or laying out clothes.

Like Bill and I, Lou is keenly aware of germs.  She doesn’t love it, but each day she comes home from school, showers and changes clothes.  She’s aware of who in her class has the sniffles or went to the nurse…and she avoids that kiddo….and provides a full report, as only Lou could, of the arc of their cold or stomach bug.

Laying there in the dark, I didn’t have any answer but this:  of course Santa will come, Lou.  Of course he will.  He’ll find a way.  A moment later, she said “I’d rather he didn’t.  It just isn’t safe.”

I had a long weekend of my stomach being gnawed by the sadness of that.  As it happened, we had two clinic appointments that week.  One of Ky’s levels was low on Tuesday, so we went in Thursday for an infusion.  Ky was premedicated prior to his infusion and mostly sleepy when I enlisted the help of a nurse to save Christmas.  He smiled as he heard my plan; he isn’t a believer in Santa, but he’s a believer in the magic of Christmas.

The nurses at Ky’s oncologist’s office are, like so many others we’ve met in the last seven months, angels among us.  Within an hour, they’d made my vision come to life.

Tinsel, our Elf On A Shelf, was quiet for 24 hours.  That’s pretty unusual for a guy known for making huge messes on the daily.  When he stirred back up, he had a package and a note.  The note was to Quinn – Santa heard her concerns about germs and he consulted the top doctor at the North Pole.  She put together a safety kit for Santa – complete with a chemo-proof gown (surely germs can’t penetrate that), gloves, boot covers, and a cap to cover his hat.  Santa would be able to visit the Macdonald family after all.  His special outfit will be by the door, next to his milk and cookies.

Yes, Lou – there is a Santa Claus.  He dwells in the hearts of all the people who have found a way to hold us close and pray for our family.  He is in the minds and hands of doctors and nurses who cared for all of us during the last seven months.  He is the twinkle in the eye of a total stranger – all the way in the Netherlands – who gave Ky a second chance.  He lives in your brother, Lou, who is braver than anyone could have ever imagined.  And he is absolutely alive and well in you, Lou – like Santa, your heart is full of love and wonder.

 

We crossed into Maine and Ky shifted in the passenger’s seat.  He conked out as we crossed the Tobin and snored through the entirety of New Hampshire.  “I’m hungry, Mama…and I need a bathroom.”  I had a feeling that would happen eventually.  Ky can only be two places with a roof:  home and the hospital.  When we were first discharged from Children’s, I asked what I should do if, as we traveled home, he needed to use the bathroom.  The nurse practitioner gave me a fresh container of hospital grade wipes (that will even kill Tuberculosis!) and special gloves…I could disinfect something enough so that he could use it in an emergency.  Shit happens…and now I could deal with it.

Eventually came today.

The Kennebunk rest area is located twenty five miles up Interstate 95.  6 months ago, it would have provided a fascinating location for a study of humans and their behavior.  Today, all I could think about was germs, the number of people who had touched the doors, that sort of thing.  But, I could get him squared away.  I got him a fresh mask and purple gloves.  I tucked the wipes under my arm and in we went.  “Mama, I’m okay now…I just need to pee.”  We were already beyond the threshold of the door, so we continued.  “I’ll just use a urinal, Mama.  It’ll be okay.”  Ky could sense my nervousness, but I saw his too.  His gloved hands were tight inside the pocket of his sweatshirt and, I think without realizing it, he was looking ahead to figure out where the least amount of people were so he could walk there.  It wasn’t hard – it wasn’t all that busy today.  I’m assuming Ky’s trip to the bathroom was, mostly, without incident.  He emerged pretty quickly, declaring that he felt much better.  As we walked out of the rest area, Ky said “Mama!  They make milk chocolate M&M’s now!!”  I looked over to where his eyes were fixed.  The classic brown and white packages were stacked high on a display.  “I think they’ve always been milk chocolate, Cappy.”  “No, Mama.  I think those are brand new – brand new since I had my transplant!  I’ll have to try them!”  I agreed and we continued back to the car.

As I buckled my seat belt, it occurred to me that since August, Ky hasn’t been anywhere but the hospital, Maine Children’s Cancer Center, and home.  No convenience stores, no malls, no Wal-Mart, no Target.  Since I’m a mama who is particularly adept at feeling guilty,  I immediately wished I’d at least found him a nicer restroom.  Something with…slightly more class, more clean, more…just more.

“Woah, Ky – that was the first time you’ve been somewhere but the hospital, clinic or home…in a long time.  I just realized that.  How was that for you?”  He looked over and smiled.  “It was great, Mama!  Did you see the tank with lobsters?  People must be buying them like crazy.  There were only two in the tank.  It was nice to see people.  And no one really stared at me.  And you know what?  I got to see a new kind of M&M’s!  I’m so trying those.”

People have asked a lot about how we are, how things are going, what’s new.  They’ve asked what’s next and where we’ll go from here.  All fair questions.  I’m sorry I haven’t answered sooner.  I’ll try to be better at that.

Life is a lot like this little snapshot.  We’re good.  Things are good.  We see things differently than we used to.  None of it is easy or perfect, but my word – he is a warrior – and my word, I am a worrier.  Today, right now – that’s what’s in front of us.  Where do we go from here?  Probably to the store.  We need to try some new M&M’s.

 

 

 

 

I need to tell you something.  Lean in a little closer, please.  Forgive my language, but I fucking hate cancer.  I hate it. I hate that I have a reason to know that September is ‘Childhood Cancer Awareness’ month.

I have held my son’s hand through things I wouldn’t dare explain here.  I’ve wiped vomit from his lips, dried tears, breathed with him through panic, I’ve cleaned feces from a hospital floor and spoon-fed him the world’s smallest bites of food, just so that he’d have something to eat.  I’ve signed on his behalf for treatment that, if his cancer stays away, will cause other side effects we don’t even know about yet…five, ten, or twenty years down the road.  I’ve called a couple of friends, declaring myself at the lowest point of my life, unsure of how I will walk back into his room and not weep by his bed.  I always walked back in…and most of the time, I didn’t weep by his bed.

I’ve made a careful point not to talk about Ky’s odds, the odds for his subset of leukemia and the things that make Ky’s particular version of it unique.  As awful as this sounds, I cannot be invested in how other kids have done.  I have one beautiful boy in front of me.  One beautiful boy who is battling.  Numbers don’t change his will, the way Bill, Lou and I love him.  They don’t change what we do or how we treat this.  Long-term survivor rates don’t account for the miracles that have already happened:  Ky’s leukemia was discovered very early, long before it had a stronghold on his bone marrow that is typically seen in kids with AML, Ky went into remission after one round of chemo and has remained there since, Ky had ten perfect matches, one of whom gave a liter and a half of his marrow so generously.  Percentages don’t account for his spirit, his determination, the way he loves and is loved, the medical team that we are blessed to have on our side.  Put simply, I’m not interested in someone doing a Google search and forgetting the mighty that is Kyan.

It’s easy for me to name what cancer has taken.  Too easy, I think.  I’ve worked really hard to try to show up in each day and see what cancer has given.  I hope you’ve seen that in my writing.  Sad as this all can feel, there is always, always hope or a blessing to be found.  Cancer has given me a whole new set of eyes to see, not just my son, but the world.  I have perspective that I will work to never lose.  I’ve had to find a courage in me over the last few months that, quite honestly, I had no idea was there.  I’ve chosen to find a voice.

The other night as Ky slept, I wondered if I could wave a wand and magically make the last several months not happen, would I?  My gut says – absolutely, give me the wand and I will hand over anything for that.  But then, would I ever have found my way to the appreciation I have for the moments between his breaths?  The last few months have taught me to live entire lifetimes between those breaths.  If life hadn’t been reduced to moments and complicated beyond belief last May, I don’t know what answers or wisdom I might have lived my way to.

But still, I hate cancer.  My reason for knowing it’s ‘Childhood Cancer Awareness’ month is five feet away from me, exhausted, but feeling a little better today.  He’s silly and bold and thoughtful and salty all at once.  He’s lived lifetimes in the past few months…and his future remains uncertain.

Childhood cancer research remains ridiculously underfunded; large pharmaceutical companies see childhood cancer research as not profitable and too risky, so they don’t invest.  Consider these statistics from Alex’s Lemonade Stand, a non-profit dedicated to childhood cancer research and support:  In the past 20 years, there have been three drugs approved to treat childhood cancer.  Three.  In 2012 alone, there were 23 new drugs for adult forms of cancer.  The lack of research means that the treatments available to children are more toxic than their adult counterparts and that means an eight times higher risk of future diseases and death.

I know everyone has a cause that they champion.  If you’ve been moved by Ky’s journey thus far, I would invite you to ‘go gold for childhood cancer’ too.  Wear a gold ribbon and if someone asks, tell them why you wear it.  If you want to donate money to a group or organization that has eased some of the financial or emotional burden for our family, I would gladly give you the names of specific places that have been wonderful resources for us.  We are blessed with good insurance, but there are silly realities, especially given the scope and sequence of what we are dealing with (like paying for parking my car in downtown Boston) that add up really quickly.  We’ve been given some support with such things that all families in this situation get.  We will pay that forward when we are able to…and we can provide contact information for such organizations if you’d like to do the same.  If you can, do something kind for a child this month.  I don’t know if there’s a greater tip of the cap you could give my Cappy than that.

 

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

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.

 

I returned to the hospital on Sunday after a couple of days in Maine.  Reports from Bill over the 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.

 

At 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.”