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.”

 

 

 

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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.

 

 

“I Am Your Praying Hands, You Are My Saving Grace…”

“You Are My I Love You” by Maryann Cusimano

bday

I am your parent you are my child

I am your quiet place, you are my wild

I am your calm face, you are my giggle

I am your wait, you are my wiggle

I am your audie

nce, you are my clown

I am your London Bridge, you are my falling down

I am your Carrot Sticks, you are my licorice

I am your dandelion, you are my first wish

I am your water wings, you are my deep

I am your open arms, you are my running leap

I am your way home, you are my new path

I am your dry towel, you are my wet bath

I am your dinner you are my chocolate cake

I am your bedtime, you are my wide awake

I am your finish line, you are my race

I am your praying hands, you are my saving grace

I am your favorite book,

you are my new lines

I am your nightlight, you are

my sunshine

I am your lullaby, you are my peek-a-boo

I am your kiss goodnight, you are my I love you.

I can’t believe it’s your 12th birthday, Ky.  I can’t believe it in a way that most any parent can’t believe it.  “Don’t blink…” people warned me.  But I blinked. The first eight weeks of your life are a total, complete blur.  You had to be fed every two hours because you were so tiny…and I’d no sooner get you fed and changed and fall back asleep…before it was time to do it all over again.  You were a tiny, beautiful dictator who ruled my every moment.  Sleep-deprived as I was, I was in total and complete awe of you.

The first time I held you, I couldn’t believe you were mine.  You were perfect.  How could you be half of me?  And your hair – my word – I’d never seen a baby with such gorgeous hair.  After you were born, Papa went home to get sleep and I held you while watching Barack Obama – then a new senator from Illinois – an up and coming guy, maybe you’ve heard of him? – on television at the Democratic National Convention.  I listened to him speak, but never took my eyes off of you.  His words…tiny you….I’m not sure I’ve ever been so full of hope.  I didn’t know that feeling would accompany every moment of our journey as mother and son.  The world as I knew it would never be the same and I was, somehow, smart enough to know that.

And here we are, on your 12th birthday.  It’s an important one.  For years, I thought it would be an important one because it’s your last year before you’ll be a teenager – and it is.  But…it’s also the last birthday you’ll celebrate with just one birthday.  In a few weeks, you’ll have another birthday, another important day that we’ll always celebrate – your day zero – the day when you’ll get new marrow that will, fingers crossed and prayers constantly sent, rid your body of AML forever.  It’s bittersweet.  Secretly, or maybe not so secretly, I carry guilt around that your cancer is my fault.  I did something, ate something, touched something, that I was a bad person and your body is paying the high price.  What I know in my head and what I know in my heart sometimes conflict.  You have AML…and along with that a rare, gnarly sub-type.  That’s reality.  People comment on my strength, but it isn’t that I’m strong.  It’s that I’ve always been an excellent student and I’m learning from the best, most honest teacher I’ve ever known.  What you’ve taught me in the last ten weeks is that it doesn’t matter how it got there, it matters the way in which you work to get rid of it.  Each day, you rise.  You remind me to focus on the moment, to keep my heart and mind where my feet are.  You remind me that sometimes it’s hard and it’s okay to be angry.  You remind me that, even when kids get cancer and people drive vans into crowds and kill others for being ‘different’, there is an unbelievable amount of good in the world.  Just like the day you were born and every day since, you remind me to have hope.

I don’t know what the next year holds, Ky.  I think that’s both a blessing and a curse.  But I do know that my wish for you this year is no different than it has been any other year – I wish for you to be happy and feel loved, always.  Ironically, that’s the same wish that you wished for me on my birthday this year.  Thank you for being my guy.  Thank you letting me be your mama.  I love you most and tenderly.

Gezellig.

I woke early, showered and crept out of Ky’s hospital room before 8 a.m. this morning.  I’ve gotten used to navigating my way away from the hospital toward 295, but today I went beyond the usual exit that drops me in South Portland, a mecca that covers most of Ky’s fickle appetite.

At 10:37, after dealing with ridiculous traffic and a closed exit, I pulled into the parking garage at Dana Farber.  I made my way to the Jimmy Fund Clinic, the only parent in the place without a child by my side.  I looked around and recognized myself, my actions and reactions, in the faces around me.  One mama did everything short of standing on her head to try to cajole even the smallest smile out of her despondent son.  She colored a hat for him, talked about their upcoming weekend plans and all the fun that awaited them…after this round of chemo.  Another mama got a snack out for her son, but held a firm limit that he couldn’t eat her Powerbar.  A papa carried his young daughter into the clinic and tried to soothe her as she sobbed when the receptionist came around from behind a desk, just to put an identification band on her leg.  I closed my eyes and to my right, I could hear a skirmish over who was the boss of the game, who would set the rules, who was in charge.  With closed eyes, I couldn’t see bald heads or faces swollen from steroids, I could just hear the struggle over who would be king of the metaphorical hill.  I relished the normalcy of that.  I kept my eyes closed until my name was called.

I was there to meet with Dr. Margossian, the pediatric hematologist-oncologist who our care will transfer to when Ky has his bone marrow transplant.  The point was to provide us with the information about Ky’s transplant without his ears hearing – and worrying – about all the information we would know to properly prepare us.  As you might imagine, ridding a person’s body entirely of his own bone marrow while simultaneously preparing it to accept new marrow is a pretty involved process, which is neither easy, nor for the faint of heart.  Part horrifying, part fascinating, part science, part miracle.  Though overwhelmed, I didn’t cry – there was just too much information floating in the air and not enough space in the conference room to hold my worry, my fears, and my hope all at the same time.  I took notes, asked the questions I was ready to hear the answers to, and listened.  Bill was at the hospital with Ky and was counting on me to come back with information, so I would.

Since May, I’ve returned often to a line from a Jane Kenyon poem “God does not leave us comfortless, so let evening come.”  Today was no exception.  Amid all the talk of chemo and conditioning and day zero and risks, there was a piece of the puzzle we’ve been waiting on.  A donor was contacted on Ky’s behalf.  Within 24 hours of that contact, the proposed donor submitted a blood sample.  That sample was sent to the lab and analyzed for the layers of compatibility with Ky’s body.  On all the levels they need to match, they do.  If the donor centers can coordinate schedules and timing, we believe there is a 30 year old man in the Netherlands who holds a very important key to Ky’s future.  Those are the only details we know:  30  years old, male, from the Netherlands.  We don’t know if he was born and raised there or if he’s an expatriate.  We don’t know why he’s in the registry in the first place – is he a generous man who just wants to help or did cancer move into his life in some way as a most unwelcome guest too?  There’s a big part of me who wants to know what he’s like.  I think he must be kind.  They’re genetically similar, so I wonder if Ky’s donor is curious in the way he is?  Does he look at the stars and wonder what else is out there?  Is he empathetic to the point that it sometimes hurts?  Might they like the same breakfast cereal?  Does he want to be a papa as badly as Ky does?  At the intersection of nature, nurture, and bone marrow…I wonder how these two would line up.

The reality is, we may never know anything besides the facts that we already know:  30 years old, male, the Netherlands.  I was told that every country has different restrictions on what they allow for contact between donors and families.  Some allow however much contact both parties consent to, others only a letter with no identifying information, others no contact at all.  I don’t know how that will sort out for us, but I know there are many people who would love to thank this seemingly magical human.  I can’t even think of his existence right now without getting teary.  Perhaps he will luck out and it’ll be only letters exchanged – I can’t imagine the weepy mess I’d be if I met him.

I left Boston after a 90 plus minute meeting with Dr. Margossian, put my iPod on shuffle, and tested the limits of what my ears and speakers could safely handle, even with a pounding headache.  There was some thing to be said for feeling the vibration of the music.  I liked being shaken to my core with musical vibrations, rather than words.  It was refreshing.

I got back to Maine Med and answered Ky, Lou, and Bill’s questions.  Ky feels very positively about the donor being from the Netherlands.  Evidently the Minecraft players from that area of the world are pretty amazing, so he’s hoping this new marrow will further his skills.  I’m sure, post-transplant, we’ll have plenty of time to figure that out.

I’ve become pretty obsessed lately with words from other languages that are untranslatable.  It started with my discovery of saudade a couple of months ago.  Tonight I learned a word from the Dutch language that has no translation:  gezellig.  It’s a word, it seems, that “embodies their warm, welcoming culture”.  Gezellig is an adjective that “describes much more than just a coziness, a positive warm emotion or feeling, rather than just something physical…[it] connotes time spent with loved ones, togetherness.”  It’s derived from the word gezel, which means companion or friend.  It’s a feeling, not simply a word.  After quite a lot of reading tonight, it seems that gezellig speaks to the heart of Dutch culture.

Tonight as Ky and I looked out at the stars, we wondered about the magical man in the Netherlands.  That he’s willing to try to help, that he’s willing to do this for Ky…that’s the closest I’ll ever come to translating gezellig.

 

 

 

“The doorway into thanks…”

“Praying” by Mary Oliver

It doesn’t have to be
the blue iris, it could be
weeds in a vacant lot, or a few
small stones; just
pay attention, then patch

a few words together and don’t try
to make them elaborate, this isn’t
a contest but the doorway

into thanks, and a silence in which
another voice may speak.

 

During Ky’s more challenging spell last week, he looked over at me and asked “Why did God do this to me?”.  It’s a question I’ve asked too.  My answers ranged the spectrum in my own head, but holding myself accountable for an answer to him – that was a whole different ballpark.  In the end, I told him that I can’t believe that God, or whatever we believe in, did that to him.  “Bad things happen,” I told him, “but that wasn’t God…or whoever.  That was just bad things happening.  You getting Leukemia is a bad thing.  But it isn’t a punishment or something that God did to you.  God, or faith, or grace – that’s in the small things we’re trying to notice.  The kindness of strangers, the love of the people around us, the actions of the incredible nurses, the wisdom of your doctors, the kindness of a potential donor.  That’s God.  Remission?  That’s God hearing all the people who believe in you and want you here, making the world a better place…being the beautiful kid that you are.”

As Sunday night rambled into Monday morning, Ky’s last bag of chemo for this round was hung.  It’s called Mitoxantrone, also known as ‘blue thunder’.  The timing of it being given in the middle of the night was deliberate as it would lessen the extent of Ky’s nausea.  I slept through the first two nights of ‘blue thunder’, but for some reason, there was no sleeping through the third.  Emily, Ky’s nurse that night, was the same nurse who hung his last bag of chemo during the first round.  She made us a fun sign that we kept on his board during the remainder of our stay after that round was done.  Lately it seems as though nothing is a coincidence.

Emily was in Ky’s room getting vitals around 9 that night and Ky struck out for the bathroom.  He was going to be sick.  Again.  As he vomited, Emily and I talked. “Poor guy,” she said.  I told her about his earlier inquiry about God, offered her my explanations, hoping that given her career choice and dealing with so much more of this than I ever will, she might have more to offer.  She did.  Her explanation was eloquent and beautiful and that of a woman who has such reverence for the Universe, good and bad.  It comforted me in such a way that I was sad Ky missed it.

At 12:30, Emily and another nurse quietly verified is medical record number, his date of birth, the name of the medicine and the infusion rate by the glow of a small pen light.  I popped my head up as she hung the mighty liquid on the pole, “That’s it?”  “This is it,” she said.  Just like that.  Round two, in the books.  After they left, I got up to look at my boy.  Sure enough, blue thunder was blue, an ominous shade of dark, dark blue.  It looked just exactly like poison dripping from the bag, down a tube, into the central line in his chest.  I couldn’t stand to look at it, but I also couldn’t look away.  I reminded myself over and over that this process is how we restore his health; this is how we put Humpty Dumpty back together again.  Then I sat by his bed and sang the song I used to sing to him as he fell asleep in my arms as a baby, over and over until it stopped dripping.

When I woke Monday morning, I went to take a shower while Ky slept.  Next to his bathroom on his ‘daily plan’ board was a note – another note of congratulations from Emily and next to that, a poem that had been printed and mounted on a bright yellow piece of paper.  It was a poem called “Praying” by Mary Oliver.  If I’ve read it ten times, I’ve read it one hundred, but it’s never meant more.

There are a million and one reasons why I have such heavy doubt around belief in something greater right now, but here on our board was a voice, a sign, a something, loud and true.  Mary Oliver has been my favorite poet for years.  I’ve made it my personal mission to teach my students about her, to teach them to notice the way she does.  I drove four hours, one way…on a school night…to listen to her read for 90 minutes.  Then, as she held a book that I brought to have autographed, I cried.  Her books are my bibles.

I was covered in goosebumps.  Emily left us notes…but it felt like a whole lot more.  Of all the poems and poets and things that could have been left, here it was.  Anyone who knows me can imagine just how much that tiny poem meant in this time of need.

When Ky woke and headed for the bathroom, he saw Emily’s notes too.  He knows how much I love Mary Oliver, so that little yellow piece of paper gave him a huge smile.  As he crossed the threshold into the bathroom, he offered “You know what?  Sometimes good things come from bad things, Mama.”

I feel like my words fall so short of the gratitude I felt in that moment, that I continue to feel for that moment.

Thank you to my beautiful boy for the reminder…and to Emily, for words I needed.

It’s A Bittersweet Surrender…

sunset

“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…

 

The Grass is Greener…

duoKy 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…