“It’s bittersweet, more sweet than bitter / bitter than sweet / it’s a bittersweet surrender…”

We were up early Tuesday morning to be at Maine Med in time for Ky’s procedure.  We waited until the last possible minute to wake him.  We were literally out the door three minutes after his feet hit the floor.  It was early, so it was just the two of us.  Bill walked us to the door, he and Lou would join us later, once Ky was settled into his room after his procedure.  No sooner than we’d gotten out of our driveway, Ky started to cry.  “Don’t take me back, Mama.  Please.”  I told him I had to – that this was part of the deal.  We had to get through this next round of chemo, then we’d have a better plan – a better outline of our next few months.  I put on sunglasses, less to shield myself from the sun, more to shield my son from my tears.  “Don’t you get it, Mama?  Kids don’t grow in hospitals.  I’m not going to grow there.  It’s not…natural.”  There was no silver lining, no bright spot to be found this morning and we both knew it.  “Mama, I need my sister.  And Papa.  And our cats.  And the dogs.  I need a yard, Mama.”  His attempt at reasoning gave way to quiet sobs.  By Windham, thirty minutes from our house, he’d resigned himself to the fact that we had to go back, but he was going to catch every single site he could on the way.

Shortly thereafter, “Bittersweet” by Big Head Todd and the Monsters came on.  “I *love* this song, Ky!”  I launched into an explanation about why, about the nuance in the lead singer’s voice, the nostalgia that the opening chords always inspire in me, the story the song seems to tell, why it matters that the word bittersweet gets split apart.  Ky heard the the chorus and smiled, “I know this song.  You used to play it all the time.  I like it too.”

We arrived at Maine Med in time to watch the city start to wake up before us.  We were close to time, but we opted to watch life perk up from our perch on the 8th floor of the parking garage.  “I don’t want to go in, Mama.”  His protests got harder to refuse as we got closer.  I didn’t either.  I knew what was waiting for him.  A bone marrow draw, a spinal tap, chemo directly into his spine…within the first 90 minutes of our arrival.  Then he’d be treated to regular chemo through his line.  This round is an aggressive one.  Since we knew he was going to need a bone marrow transplant, Ky’s doctors opted to skip the traditional second round and go straight to the more intense third round.  Shorter in duration (only six days), but mighty in awful.  His oncologists told me to ready myself.  He’d be sick – both chemos he would get were considered ‘moderate’ in terms of causing nausea.  Two wrongs don’t make a right, but two moderates seem to make an awful.  I’d also been told that one of the drugs can be challenging from a cardiac standpoint, so he’d need to be monitored carefully during infusion and for an hour afterwards.  Some kids also get fevers.  Bittersweet, more bitter than sweet.

Waiting for us on the other end of that day, though, was something beautiful.  Ky was given the opportunity to make a wish through Make-A-Wish Maine.  His fairy godmothers met with us as a family.  One filled out paperwork with Bill and me, the other stayed with Ky and Lou and let them dream big.  We’ll find out shortly if and how Ky’s wish will be granted – but for now – know that it was given a whole lot of thought – in a way that only Ky could.  As the last few days have gotten increasingly challenging, he brings up his wish, “Do you think they’ll grant it, Mama?  It seems kind of like something they might not be able to grant.”  I think it’s just the kind of wish they’d love to grant.  Bittersweet, more sweet than bitter.

The next day our spirits were lifted further by the news of Ky’s remission.  I hoped, but I didn’t dare let my hopes get to high.  Cancer has taught me to keep two feet on the ground at all times…more often than not, two feet and two knees.  It’s one step in his journey, but it’s such an important one.  As I mentioned on Facebook, we will finish this round of chemo and then, if a donor is identified, move on to the bone marrow transplant.  He will still need that because that’s the best way to be sure that there isn’t leukemia hiding out somewhere, waiting.  I’m telling myself it’s not a better or worse path on this journey, it’s just a path.  Bittersweet.

Bill, Lou, and I were ecstatic to hear the news.  What a victory!  Having been reminded that hospitals are no place for a boy to grow and knowing that soon he’ll be confined to his room, I took him out for a walk. “Are you excited to be in remission?!” I asked Ky, as we lay in the grass outside the hospital, just the two of us, soaking up the sunshine.  He looked up at the trees, then over at me, “If I get too excited, they’ll find bad news to give me, Mama.”  Bittersweet…more bitter than sweet.

He’s spent the last two days as sick as I’ve seen anyone.  I spoon-fed him eight and a half bites of applesauce yesterday, but that was all he ate.  He has enough fluids going into him now to keep him hydrated and going, but for a mama who thrives on making sure people are fed, and hopefully then happy, this is a fresh layer of hell.  The more he sleeps, the less he’ll remember, his oncologist told me yesterday.  The current issue is that this mama doesn’t seem to sleep…and she’s going to remember.  Every.  Last.  Detail.  And while I’m glad he’s sleeping, the stillness of my never-still-boy is hard to watch.  He has a pounding headache that is made worse by the amount of retching he’s doing.  He refused so many medications that would have helped him during the first round of chemo, but this time – he’s not.  He can’t.  It’s a bittersweet surrender…

 

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Ky and I wish to report that sometimes the grass really is greener.  Mostly.  We got to go home for a few days.  What was once mundane seemed so magical – I can’t quite explain it.  Our time in Eden wasn’t without reminders of our current reality – there was medicine to take and his line needed to be flushed and maintained and we had about 18 hours worth of a fever that required antibiotics.  But…we had so many average, beautiful moments.

We spent time as a family, we spent time with dear friends, we paired off for mama/daughter and father/son adventures, and then we came back together to compare notes.  We told each other “I love you” more than what most people would regard as socially acceptable.  Given the last month of our lives, I don’t think any of us are willing to leave anything to chance.

On the same day his friends celebrated the end of elementary school with a 5th grade farewell ceremony, Ky learned that he needs a bone marrow transplant.  It feels as though my son has had to take a temporary leave of absence from being a kid.  The depth of unfair as it relates to Cancer seems to know no bounds.

The night he ran the high fever, he reached for me in the darkness.  I thought he was fast asleep; I was laying next to him counting his breaths.  He put his hand on my shoulder and said “Mama, we’re going to beat this.”  It was the first time since his initial diagnosis that I heard that kind of resolve from him.  I don’t know if I’d truly exhaled since I learned he had Leukemia…until then.  Finally, there was a reserve of strength that wasn’t just about the day-to-day.

As for now, Ky and I are back at Maine Medical Center.  Yesterday morning  he had a bone marrow biopsy, as well as a spinal tap and intrathecal chemotherapy.  Late yesterday afternoon, his second round of chemotherapy started.  His bone marrow is on its way to Seattle for testing to help us better understand how the Leukemia responded to the first round of chemo.  Our greatest hope is that he will be in remission.

The doctors in Boston are currently working with the National Bone Marrow Registry on a formal search for Ky’s donor.  He has ten people who are perfect matches.  When I can’t sleep, I think about what those ten people are doing, whether they’ll be willing and able to help Ky as we move forward, what they’re eating for breakfast, and how, when this is all said and done, I will ever repay them.  I think I’ll start with ‘thank you’….and I’ll say it over and over again as he gets to return from his temporary leave of absence…

“Was blind, but now I see…”

The word grace occupies a lot of real estate in my head right now.  Recently, I’ve come to a deeper understanding of that word as an observable concept.  I’ve needed to be able to do that.  No matter how rattled my faith or spiritual base is right now, I can see grace.

Grace is…

-A nurse who, at some point between the hours of 3 a.m., when I fell asleep, and 5 a.m., when I woke, took it upon herself to cover me up with a warm blanket.  Grace is a nurse who rubbed Ky’s back gently as he wretched and had a bloody nose.  Until he was done getting sick, she stood beside him and whispered “We’re going to get you through this, sweet boy.”  Grace is the nurse who will walk into this room tomorrow and, no matter how miserable he feels, his face will light up.  She took it upon herself to create a special handshake with him; who, when his door was allowed to be open, encouraged him to send Nerf ammunition zipping into the hallway at the other unsuspecting nurses.  She is his very favorite.  Grace is the nurse who got in his face today because he needed medicine to address his pain and he didn’t want it.  Grace is the growing army of nurses who know about Ky’s best friend Avery and how her visits bolster him.  It’s the delicate balance they intuitively know how to walk between “How was your visit!?”and asking too much and mortifying him (perhaps their grace in that department will rub off on this Mama….).

-Grace is the ways our collective communities are showing up – in ways too numerous to count.  Our families, my Bridgton Academy community – faculty and alumni alike, Bill’s Macdonald Motors community, Ky and Quinn’s school community, our greater Bridgton community, our high school and college communities.  Grace is our collective tribe saying “We can do this.”

-Grace is the eye contact of strangers on the rare occasions when we are outside his room.  Ky’s head is shaved, he has to have a mask on, and there’s always an assortment of medicine bags attached to his i.v. pole.  Thank you, strangers, for seeing my son.  I see you see him.  You aren’t staring, you are acknowledging him.  That means as much to Kyan as it does to our family.

-Grace is the people who have to look away from my son under those same circumstances.  I see you trying not to see him.  I understand.  Eight years ago when we were here after Quinn’s first heart procedure,  I was you.  I couldn’t handle looking at the children with Cancer and chemo.  Look away, strangers, because you’re totally right.  It shouldn’t be this way.

-Grace is our favorite oncologist who Ky trusts enough to cry in front of him.  It’s the water I see in that same doctor’s eyes as he watches Ky figuring out this process as best as his eleven-year-old, old soul can.

-Grace is seventy-two steps to the washing machine down the hallway from Ky’s room.  It’s an appreciation for a task I used to dread, that now brings a brief respite and different sense of purpose to my day.  It’s the sixty-three steps back to the sink outside his room where I scrub my hands and the two additional steps it takes me to get into his room without touching anything, including the door handle, with my clean hands.  It’s recognizing that it takes me seven less steps to get back to him.

-Grace is the woman who works in housekeeping who comes to make sure his room is clean each day.  It’s her efforts, although English is not her first language, to connect with us.  It’s the growing confidence to trust that I understand her and, because of that, her willingness to speak more.  It’s that she thinks I know anything about dryers and how to repair them because she sees me walking once a day, seventy-two steps with a basket of laundry in hand.  It’s also the knowledge she brings to me.  She’s a mama of six and, she tells me, “Honey, it doesn’t matter if you have one or six.  Once you are a mama to one, you are a mama to all.”

-Grace is the network we’re somehow building from a small hospital room.  It’s a sweet, handmade card from two total strangers in England.  Ky whipped up three different mock conspiracy theories about how they heard about him, but I am sure it was a friend who wanted to make sure he was getting mail – and a variety of it.  It’s other friends calling in HUGE favors to give Ky (and, quite honestly, his mama) boosts of encouragement.  It’s another total stranger who completed a triathlon this weekend in California with the words “Cappy -Stay Strong” on the back of his shirt.  He heard about Ky from the mother of a dear former student who has grown to be a dear friend.  It happened that this total stranger was completing this triathlon to raise money for Leukemia research.  Run, swim, bike, sweet stranger.

-Grace is my beautiful daughter who is so unbelievably brave, but is equally scared.  Quinn is a wonder.  Given the choice, I think she would trade places with her hero in a moment.  There are a number of us who would.  Grace is her quiet realization tonight that her brother was diagnosed with Leukemia two days after her ninth birthday.  I was hoping she’d not connect those dots; I didn’t want them connected in her mind.  They shouldn’t be, but – they are.  Grace is three tears falling down her cheeks and her explanation that “Sometimes they spill out, Mama – so I let them go.”  Grace is that they spilled out a lot from Mama after that – and from her too.  That was good.  Grace is the way she’s helping us figure this whole thing out, because she is – and of course she’s doing it in a way that only she could.

-Grace is Kyan.  It’s the way his hand goes, so easily, to the side of his bed when he wants to hold mine.  It’s his requests for a hug or for me to lay in his bed with him.  It’s his earnest belief that, even though we just shaved his head on Friday, he can “…already tell it’s growing again.”  It’s the way he’s handled his entire world being turned on its head with equal parts laughter and tears and wit and anger.  It’s his voice through the darkness a moment ago, wondering if I needed a blanket because I could have his.  It’s his plea to “Please just take me home for five minutes…” because even though he understands I can’t yet, he gives himself the opportunity to ask.  Grace is his curiosity about everything, a trait that, even now, never gets checked at the door.  Grace is returning from a meeting with his doctor today to find him getting himself ready for a brief walk and then transportation to some testing – dressing his own feet, lacing his own shoes, washing his hands and getting a mask out for himself, even though he doesn’t have a lot of strength right now.  It’s his proud smile from under that mask because I was totally taken aback, so incredibly proud to see him navigating the real estate in our current world.  Grace is the way he’s showing up for battle, every single day.

-Grace is the way this has all unfolded.  Given the choice three weeks ago when this became a reality, I might have said “Tell me everything you can about what kind of Leukemia, what the course of treatment will look like, what complications we will see…tell me everything.”  But that would have been so wrong – I know that now, even though it’s early in this process.  Grace is sitting here even now, only three weeks later, knowing I couldn’t have handled any of that then, but I can now.  At least I can today.  At least I can right now.  Three weeks ago, I hadn’t seen the way nurses care for us (used intentionally), the way our communities would support us, the way people would see him – or not, the relationships he would build, the value of human interaction, the network this would create, the way Quinn would rise, and the way Kyan could rally in a way that…I don’t have words for.  Even as his mama, I never knew he was so strong.  You never do know until you have to, I guess.

#beautifulthingshappen

 

 

“Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.” – Louise Erdrich