Tag Archives: cancer

League Apart

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At 21,
I imagined her in college
or backpacking in Belize
working some 9-to-5 job that she loved or hated
so that she could earn enough money to cover her rent
and the cost of clubbing with her friends
making art and living in our basement
joining AmeriCorps and teaching children how to read
spending hours wandering in museums for inspiration
rarely leaving her room because she was so engrossed in creating new apps
or music
or poetry
or never being home because her social needs were so high that she was always out
in the world and we wished at least once a month she’d stop long enough to eat dinner with us
as a young, single, loving mother
on a boat in rough seas with Greenpeace protecting whales
married
researching grad school programs and stressing over paying back student loans
single and ambivalent about the status
obsessed with locating and meeting her birth parents
working in a tattoo parlor
preparing for medical school
skating in the Olympics
building a tiny house with her girlfriend near the edge of a lake next to the greenest forest
base jumping in every continent

All is less than optimal
it is not the future
that any parent imagines

I didn’t envision
the organ failure
or cancer
the speech therapy
and special education services
wrapping my arms around my tiny-in-frame but adult-in-age daughter
as she buried her head against my stomach
her body shaking
as we went to visit
the program she’ll enter
when she graduates from high school in June

My language is foreign to my peers
they struggle to understand and respond
mishear my hope and optimism
as acceptance or surrender
to this abrading future

Although I’ve learned to mine the joy and beauty
in the oddest of overlooked cracks
no dreams have been conceded
as I attempt to swallow with some grace
each of these real days

 

February 3, 2017
Julie Ayers

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April 23 —
Today, Lucius turns nine.

Nine years ago, a ringing phone
woke me in the early morning dark
and my brother told me the happy news
about his son’s birth.

Later that day, my family
joined in a Kidney Walk fundraiser,
my 10-year-old daughter proudly wearing the sign:
Today is the 4th anniversary of my kidney transplant.

She was strawberries and cream
amidst the pink dogwood blooms.

We were relief and jubilation.

April 30 —
Nine years ago, a routine chest x-ray
of my daughter showed her lungs
full of dark blooms.

May 11 —
My birthday.
Nine years ago, I packed bags
for me and my daughter,
her being admitted to the hospital
for a lung biopsy.

May 13 —
Mother’s Day.
Nine years ago, my tiny, sweet, resilient daughter,
who carried a torso already striped with scars,
was diagnosed with lymphoma.

Every Spring Since —
Like everyone, I watch for signs
from the living things around
that it is time again to bud, grow,
display what has been hidden inside,
unseen but waiting.

I watch my radiant daughter
and pray, again, please, this year,
that every reveal hold promise
and unspoiled beauty.

April 2015
Julie Ayers
NaPoWriMo Day 23

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Today, Birthdays, Holidays, and Anniversaries

Written

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we have our stories
written in indelible DNA
myelin sheath to lace
amino acid to crystal
bell curves on the bottom of tranquility
organs falling still, silent
cells that morph to blossom darkly

the other stories
we draw in soft pastels
only fix them by resolution
dangling by thin wire
in all their suspended coloration

the plastic hospital bassinet
sheltering wisp of white onsied baby girl
arms stretched upwards, reaching
our hands unequivocally catching

forceps liberating, cord cut,
blue eyes open, fingernails fine as rice paper
a boy all weary, bloodied
from the long struggle to here

heads that fit snug in collar-bones
hair smelling of baths of bubbles
Goodnight Moon and bunnies
and spoons of mush
sippy cups and squeak of swings

hospital hallways, sleep chairs, ERs,
ORs, intensive cares, incisions, syringes,
liquids, pills, capsules,
nights and nights and nights
full of tubing and machines
that pump and beep and drain
procedures that punish and save
and save
and save
and save

circus clowns spring-board launched
somersaulting over lines of bowed children
chemo-bald and nervously giggling
cotton candy in blistered mouths
that needed to relearn the shape of laughter

a call, a text, a visit, an email
a party invitation and picnic at the pool
a book, a glass, a poem, a concert
hats and sunscreen and trophies
and tribes

fires browning marshmallows
warming fronts and feelings
as backdrops for men thumbing guitars
vivid sparks of voices rising
into midnight blue

and saved
and saved
and saved
and saved

 

May 7, 2014
Julie Ayers

The Plunge

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Seems like January should be a happy time for me and my family as it marks the anniversary of my daughter Sierra’s life saving kidney transplant. Six years and counting. Which is AWESOME-SAUCE, no doubt. That should mean we are hooting, hollering, and celebrating with giddy joy, right? So you’d think.

But here I am, feeling like such a Debbie Downer, a person with a tragically negative nature, as that is not the way I experience this period each year. I’m not thrilled and happy, even though I try very hard to be (and my inability to be happy means I also battle with feelings of shame and embarrassment, frankly , on top of everything else).

I am grateful, deeply, weepy-wild grateful, don’t get me wrong. I’m so grateful Sierra got yet another chance at a period of good, quality life. But, in addition to grateful, I also feel physically ill with anxiety and dread. Like my lungs can’t get enough air. Like my stomach wasn’t really designed to catch food after all. Each January, I seem to end up in this same emotional wasteland, even though I try like mad to avoid it, reconstruct it, spin it round to something sparkly and pretty. My malaise is generally kick started by Sierra’s transplant anniversary, then fueled by the necessity that she undergo her annual CT scan to check for a return of cancer, and an echocardiogram to make sure that her heart is not slipping back into failure.

Having a transplanted organ in her body means Sierra is at high risk for cancer. Very high. Much, much higher than other people who have transplants and are on immune suppression. Her body has already shown its intolerance for being suppressed. The critical drugs she needs to take to help give her the best chance for not rejecting the transplant are, for Sierra, like cancer fertilizer applied to the garden of her morph-proned cells. In 2006, Sierra’s lungs were speckled with lymphoma as a direct result of her immune suppressed status after her initial kidney transplant. To fight that cancer, she had to stop taking her immune suppressants and undergo chemotherapy, losing her transplanted kidney in the process, and nearly her life. Now, she again takes the same exact drugs to keep her second kidney happy that caused cancer to bloom in her system eight years ago. The oncologists would have preferred that Sierra never go back on her immune suppression regime, but she was barely hanging on to life while she was on dialysis after her first transplant failed. In addition to her transplanted kidney failing, her heart failed as well. We were facing the possibility that she need a heart transplant as well as a kidney transplant back then. My daughter would simply collapse sometimes as we walked down a market aisle, or she tried to sit on a chair in a restaurant, opened the refrigerator door.

Our choice at the time was to proceed with another kidney transplant, hope her heart would then rebound, and put her back on the exact meds that caused her cancer in the first place, or let her get sicker and sicker and die on dialysis. That simple. That complex and mind warpingly hard.

What she has lived through, what we’ve all endured during the past eighteen years, I would hope no one would ever have to experience. Dealing with Sierra’s very challenging health issues and crises is even more difficult because she is significantly developmentally disabled, is able to manage minimal self care, and actually endangers and injures herself through her behavior and lack of impulse control. Think about painful and hard and exhausting and unbelievably stressful and maddening and frustrating and frightening and seemingly endless. Now multiple all that horrible by the intensity of ten million. That might give you a sense of day one of this type of journey. And surprise, surprise, the next day is really no easier, nor the next. It’s terrifyingly difficult from beginning to end.

Hey, and this is coming from your unyielding apocaloptimist, glass-half-full girl even when I’m stranded in the desert, a card-carrying perpetually positive realist. I’m hardwired for happy. I got really lucky that way. But that still does not adequately immunize me from being occasionally kicked to the gutter and shoved down the storm drain by the circumstances of life.

So, this is where I sit. January. And yes, I seek help. I implement survive and thrive strategies. I try my darnedest to not let this happen, but happen it does, anyway. The fear creeps in, could all that come back? The reflections on the past prompted by the anniversary, the trips to the hospital, all make all those long gone, very scary, feelings surge.

This January wave that crashes down on me and that is sucking me out to sea will recede, like it always does. Once I get an All Clear report after Sierra’s CT is administered and read, and hear her heart is functioning within an acceptable range, the drowning sensation will abate. The waves will start to soften and stop knocking me against the abrasively sandy bottom. But I will be left rather distant, well over my head, when it finally goes, requiring me to slowly make my way back to that far-off, pretty shore.

All attempts to throw me life preserves, deck chairs, life lines, wooden kegs on which to cling as I work to stay afloat, will be so very appreciated.

Be well and mighty, fellow swimmers. Take a breath – and paddle on.

The Unhappiest Place on Earth: Disney’s New Disability Policy

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Slumped in a wheelchair, I pushed my 11-year-old daughter through the park to see Mickey Mouse, exhausted but resolute. We’d set her dialysis machine up in the hotel room the previous night and slept fitfully as it cycled the fluid in and out of her body in an effort to filter the impurities that her dead kidneys could no longer manage. She was in kidney failure following a battle with lymphoma that had been discovered in her lungs when she was ten. Her heart had failed along with the kidney. She couldn’t walk from the car into the grocery store easily, let alone through the Magic Kingdom. She tired so easily, got out of breath. But she wanted to go to Disney World, so that was where we were going to take her. And we could do this for her, for this child who had just spent a year-and-a-half in and out of the hospital, undergoing chemo and surgeries, enduring months of daily dialysis, because Disney had an excellent program providing accommodations for people with disabilities.

We knew this program well because when our daughter was a wee six-year-old, she’d been granted a Make-A-Wish trip, the first time she was in kidney failure. She has a rare and progressive genetic disorder that destroys organs and tissue over time. Before her father donated his kidney to her then (his kidney, that she lost during treatment for cancer four years later), our girl asked for her wish, and was granted a memorable week at Give Kids the World, a special village in Florida where Wish Kids can stay and are provided with passes to all of central Florida’s major theme parks.

There are things about living with disabilities, chronic or acute illness or disease that might not be apparent to most people. Our lives are regimented by medication or procedure schedules. Those things may need to happen in private or even require sterile method to be followed. The person who has the challenge often battles intense issues with fatigue, his or her little body having to work so hard to do things the rest of us do effortless. Draw in air to our lungs. Push it out. Our strong hearts pumping blood all the way up to the tops of our heads and the soles of our feet. When we go to Disney, we might be able to manage a few hours in the park before our child is so overcome with fatigue it becomes unsafe. And for us, our daughter doesn’t sweat properly, so extended exposure to the heat becomes a danger in itself.

Being able to bypass long lines and enter rides more quickly meant my child actually got to experience more than one, or possibly two, attractions at Disney during a day. Our tickets cost the same as everyone else’s tickets, but our child’s body does not permit our family to enter the park at opening and leave when it closes so that we can see and do and experience and make lots of wonderful memories. We need to move through rather quickly and leave after a far too brief stay. Go back to the hotel room. Run her through a manual pass of dialysis. Give meds. Let her rest and sleep.

Sure, we could stay home. Not take this type of trip or gamble this way. We could let her live her life out in a series of hospital rooms, her bedroom, and classroom when she’s able to get to school. That is not much of a life for a child who loves everyone and everything and lights up a room when she explodes into it. That is not much of a life for any child or anyone.

Some people have abused the disability accommodation system at the Disney parks, and abused it badly. Because of their thoughtless and selfish actions, Disney has decided to dramatically alter their disability program. What they are now offering instead would have meant our family could still only manage to visit one or two attractions during a visit. I wonder what this will mean to all the children sent to the Give Kids the World Village on their Make-A-Wish trips? The grounds of the village are filled with small, sweet bald heads, kids in wheelchairs, painfully thin kids wasted by chemo or disease, puffed up children from steroids. They are children who have gotten sick, but they are children and want to still do what children do. They want silly and exciting and fun and good-scary, the kind of scary that doesn’t eat up your cells or cause parts of your body to be cut off or out. The family in the condo next to ours at Give Kids the World was on their goodbye trip with their daughter. There was nothing else to be done for the tumor destroying the brain tissue of that beautiful seven-year-old. Mom, grandma, and little sister were at Disney with her to see her smile and fix those final memories of a happy time firmly in their minds before they had to stand at her bedside and watch her die.

Just the other day, my daughter, who is about to turn 18 this week, turned to me and said, “Can we go back to Disney?” My daughter, who has fought for life from her first breath and valiantly battled every horrible medical nightmare thrown at her so far, who continues to live with a disease which now appears to be shutting down her pancreas and will not stop ravaging her ever — unless we are fortunate enough that some cure is found, and found soon — wants to go back to the happiest place on earth. What do I tell her?

September 2013
Julie Ayers

Disease 7

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the email at 3pm on Friday said diabetes

check her blood glucose frequently, it advised

phone the on-call endocronologist if she measures or exceeds 300

 

Frankenstorm Sandy roaring towards us

the printed words pelted like bowling ball sized hail

 

the She is seventeen

my sweet, ever embattled, enchanting daughter

who has the intellectual capacity of a five-year-old

who has already survived kidney failure and two kidney transplants

cancer

heart failure

 

she’s not been diabetic before

but her uncle was, since he was 12

he died, hard and painfully, not long ago

as we stood, gutted, close by him in his and his wife’s forest green carpeted bedroom

 

the email was brief

it lacked essential details

like how we all manage to save ourselves

again

 

November 2012
Julie Ayers