Perpetual Motion Machine Publishing
Cibolo, Texas
Bleed
Copyright © 2013 Perpetual Motion Machine Publishing
Individual works are copyright by the respective authors
All Rights Reserved
The stories included in this publication are works of fiction. Names, characters, places and incidents are products of the authors’ imaginations or are used fictitiously. Any resemblance to actual events or locales or persons living or dead is entirely coincidental.
Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form, or by any means (electronic, mechanical, photocopying, recording, or otherwise), without the prior written permission of both the copyright owners and the above publisher of this book.
Proceeds from the sale of this book will go to The National Children’s Cancer Society. www.thenccs.org
www.PerpetualPublishing.com
Cover Picture by Andre Govia
Cover and Interior Design by Lori Michelle
wounded star
wait for me tonight
we’ll heal together
-David Pointer
TABLE OF CONTENTS
True Horror by Lori Michelle
With Paper Armour and Wooden Sword by Tracie McBride
The Addition by Bentley Little
Welcome to the World, Mister Smiles by T. Fox Dunham
Leukemia is Fookin’ Stoopid by ‘Anna DeVine
The Nightly Disease by Max Booth III
Sludge by Stan Swanson
I Am Disease by Jen Finelli
Sky of Brass, Land of Iron by Joe McKinney
Descent by William F. Nolan
Five Little Tips by Kristin Bryant
Remission by Charlie Fish
Ears by Eli Wilde
Mr. Expendable by Peter N. Dudar
The Call by Rick Hautala
Where the Wild Welo Waits by John Hawkhead
A Billion Monstrosities by Mort Castle
Dance of the Blue Lady by Gene O’Neill
Unwoven by Tim Waggoner
King Rat by James Dorr
The Rooster by Glenn Rolfe
The Monster in Me by Suzie and Bruce Lockhart
Muted by Hollie Snider
Dreams of Shadows by Robert S. Wilson
The Funeral Portrait by Christian A. Larsen
Impossible is Nothing by Jack Ivey
The Gift by Lindsey Beth Goddard
Lost and Found by Patrick Lacey
That Which is Not Seen by Dane Hatchell
Goddess of the Moxie Moon by Absolutely*Kate
Finding Peace by Writing About Cancer by T. Fox Dunham
The Lucky Mouth by Gerry Huntman
Death Knell by Richard Thomas
The Sallow Man by Adam Millard
March by Micah Joel
Bumper Car Bandit by David Pointer
No Limit by Peter Giglio and S.S. Michaels
The Unstoppable Annihilation by Jeffrey C. Jacobs
I Know This World by John Palisano
Fight by Jay Wilburn
Slippery Love by April Hawks
Red-Wat-Shod by Jason V Brock
Get the Cell Outta Here by Marian Brooks
All the Sludge by Benjamin Kane Ethridge
Never Enough by J. David Anderson
TRUE HORROR
essay by Lori Michelle
Right After the Diagnosis
In January of 2011, when my son was barely three, he was diagnosed with Acute Lymphoblastic Leukemia, otherwise known as ALL. Since then, our lives have been a series of chemotherapy rounds, hospital visits, hospital stays, medications, treatments, MRIs, CT scans, x-rays, echocardiograms, echoencephalograms, sneezes, fevers, trips to the emergency rooms, lumbar punctures, seizures, and just plain old wondering when and if it will ever end. If I think about everything all at once, it is too overwhelming to comprehend. I have found the best mode of survival is to take just one day at a time.
ALL type leukemia is where the malignant white cells continue to overproduce in the bone marrow, causing the red cells to be squished out. Red blood cells, of course, are responsible for the transportation of oxygen in the body. Lack of red blood cells, lack of oxygen . . . you get the point. It’s just bad. No one knows the exact cause of ALL, or why certain children get it and others don’t. In my son’s case, it was due to an extra chromosome.
His blood is on file in a research facility somewhere where it is being studied to determine if the extra chromosome can be eradicated before it develops into a cancer. The research team collected a sample of my blood to keep next to his, to see if maybe I carried something in my own blood that would account for his illness. At this point in the game, I hope they find anything useful to prevent a future child from having to go through this ordeal.
My boy’s journey started with him falling off a bed in October 2010. No one thought much of it at the time. He wasn’t three yet, a rambunctious child who didn’t have a mild mode. We took him to the emergency room, since he was still complaining about the pain after the standard crying one expects when any baby falls off a bed. Several x-rays later and nothing could be found wrong with his hip. The doctor told us to just watch for signs of infection and it would get better soon.
So it did, but yet it didn’t. A couple days later, he was the same rowdy kid he had always been. But every once in a while, he would walk a little funny. Not enough to really notice, but he just wasn’t quite right. Then there were the unexplained fevers. Just random spikes in fever that would go away when given Tylenol. Being the minimalist mom that I am (I learned from my own mom if you aren’t dying, then you go to school), I didn’t think much of it. I mentioned it to the GP at his three year check up who didn’t find anything wrong with the boy, so nothing was done about it.
In December of that year, his limping seemed to have not improved at all. I finally broke down and took him to a pediatric orthopedic surgeon; not a commonly found practice, surprisingly. The doctor took x-rays, saw nothing significant, but seemed more worried when I spoke of the fevers. He ordered an immediate MRI to be done. Being the time of year it was, we took whatever MRI appointment we could get.
He was not to be sedated during his MRI. Do you have any idea how hard it is to keep a three year old still for a frighteningly loud MRI? I do. I gave him Benadryl in hopes it would calm him some, and then I had to lay across the back of the MRI table to hold his hands through the tube. He actually did relatively well and they were able to get clear enough pictures.
So then came the wait. The orthopedic doctor was, of course, on vacation. The imaging people couldn’t tell me what they saw. We weren’t going to get any answers until after the new year had begun. Wrong.
Again, my boy fell.
This time he decided to wear his new Christmas socks while running through the tile floored house. He slipped and fell, and then grew this raging fever. He became listless and stayed on the couch for the better part of days. This wasn’t my son at all. So off to the ER we went again. Funny enough, we got the same doctor. X-rays showed nothing, ultrasounds showed mass, but of what, they didn’t know. She managed to get the MRI films which showed he had a tiny hairline fracture that had healed itself. She wanted an orthopedic specialist to look at it, but since it was two days before New Year’s, the staff was limited. So, the boy an
d I were transported to the children’s hospital downtown. It was the first time I had ever been in an ambulance. Unfortunately, it hasn’t been the last.
A flurry of activity then commenced: blood taken, IV started, more x-rays, meds given, and another MRI scheduled, this one sedated and with contrast. So at three in the morning, we were taken downstairs, where they gave the boy something to knock him out, then proceeded to bundle him up like a mummy to do an MRI. There wasn’t much sleep that night.
We saw so many doctors that next day, I don’t even remember who said what. I know the orthopedic doctors could find nothing wrong, but there was definitely a mass of something around his lower back. Finally an oncologist doctor came in. He told us that the boy’s blood count was normal, which was a good sign, but he thought he had Langerhans Cell Histiocytosis; a rare disease, but not deadly. The only way to determine the ultimate diagnosis was to do a bone marrow aspiration and a biopsy. Luckily enough, the doctor was smart enough to realize that it was New Year’s Eve and the staff present at the hospital was next to none. He let me bring the boy home for the rest of the weekend.
Monday came, and back downtown we went. He came out of surgery at around five. I went into the recovery room with him. The doctor came in to see me at six.
It wasn’t good news.
My son had cancer.
The realization hit me like a ton of bricks. Cancer is the horror story you hear about other kids, other families, other places. Not your child. Never.
The doctor had just given my son a death sentence.
Twenty years ago, that would have been true. Thankfully, today it is not.
From there, we basically moved into the hospital for a few weeks. You get used to the routine, the food, the same Mickey Mouse video playing on repeat.
A couple of days after his diagnosis, he was fitted with a port-a-cath. It’s a big plastic looking disc that gets placed right under the skin, attached to a tube that gets sewn into the vein. It makes IVs obsolete. Anything that gets stuck into the port or drawn from the port is directly into or from the vein. It’s a little surreal to see at the beginning, but you get used to it. My son’s is on the left side of his chest, and sits right on his ribcage. Now that he has gotten bigger, it is almost completely hidden from the naked eye.
The hospital placed him on a set schedule for chemo, with all three years of treatment planned out to the day; assuming, of course, there are no setbacks. We were finally released from the hospital after a couple of weeks with about $200 worth of medication in hand. It’s a flurry of “take this pill this many times, take these many pills this many times, here’s a liquid, here’s another liquid, we have to inject this, he needs an injection of that”.
The first month was the roughest. Boy couldn’t be around other people. Yes, you need to kill off those white cells to get rid of the leukemia, but in the process, you also kill off any way of fighting infection. Something as simple as a sneeze can kill a chemo patient. My dad flew in from California to help. Now, for the first month of chemo, they give the patient steroids for thirty days, which makes the patient incredibly hungry and cranky. My son gained about fifteen pounds, and on a three year-old body, that is a lot. He started eating green beans dipped in ranch dressing, packages of macaroni and cheese, and American cheese slices by the pound. I had to buy all these things in bulk on a weekly basis. I know we went through about eight pounds of cheese.
On Steroids
Over the course of the next few months, he lost the weight and was able to go back to his in-home day care. My dad flew home and life became frequent clinic visits for blood counts and chemo. My counter looked like a pharmacy and Lysol was a regular cleaner. It just became normal. I had to make it normal. If I thought about why it was happening, I know I would have lost my ability to remain a rock for the kids. One day at a time. It was the only way I could handle the situation.
Nine months is the length of active chemotherapy. From there, chemo kids go on to what is called maintenance. Our chemo is very organized now. Once a month, we go into the clinic. Once every three months we go in for a lumbar puncture. Luckily, he has never shown any signs of leukemia in his spinal fluid, but they have to chemo there anyway to ascertain there isn’t any.
Unfortunately, the chemo has been eating away at his brain cells. He shows what is called white brain matter in his MRIs. It has led to erratic behavior, slowness in learning, and severe ADHD.
This hasn’t been an easy road. Anytime he gets a fever, I have to take him into the emergency room to check his blood levels. He has been hospitalized a handful of times for infection. I know now to pack anything for a potential hospital stay before I take him in. I now cringe anytime I hear him cough or sneeze. I pray that it is just allergies and not something that I will need to have him hospitalized for. I have to constantly watch him for any signs of fever. I feel his head at least three times a day, just to make sure. And don’t even get me started on seizure panics.
Technically, my son is in remission now. That doesn’t mean he is cancer free, contrary to popular belief. It simply means that the cancer is no longer growing. He has to undergo chemo until March 2014 before they can check his bone marrow and make sure that the cancer is gone. His chances of survival are good. His chances for relapse are slim. His chances of living a normal life in the future are decent.
Children are so resilient. They survive the cancer ordeal because they don’t know any better. They don’t understand grave seriousness of cancer. They take their meds because they just do. They don’t know that they are supposed to be sick. They don’t really know why they are at the hospital. My son thinks we go there so he can play with toys. To him, going to the hospital is normal. Sad as that is, it has just naturally become part of his life.
Fun at the hospital
He knows that at night he has to take medicine, sometimes more than one. He knows that he has a port and can’t get hurt on that side. I don’t know if he is aware that other children don’t have a port. He knows that he is a little boy who likes to play with his friends and likes cookies and pizza and to play football. He doesn’t know how his existence sometimes hangs in the balance. He doesn’t know how close to death he has been so many times in his young life.
I have been entrusted with a gift, a child. A special child. One who has shown me that the world isn’t always rainbows. He has shown me true horror, one that he has fought very bravely. And he is a reminder to not take our lives for granted.
I love you my big boy. Mommy is very proud of you.
Right after shaving his head because of the hair loss
Blisters on his lips and in his mouth from the chemotherapy
Post Surgery. One of his chemotherapy drugs is being infused. You can’t tell from this picture, but the liquid was bright red
Halfway through Induction (Phase I of chemo) and the start of his swollen body
In the recovery room after one of the lumbar punctures where they insert the methotrexate into his spinal fluid so that the leukemia won’t attack his Central Nervous System. During the maintenance phase, he gets one of these every three months. Unfortunately, the methotrexate has severe side effects on the white matter of the brain
At the Halloween Hop put on by the local cancer society in October 2011
Thinning hair and the beginning of his hair loss
During re-intensification, about 6 months after his initial diagnosis. He had to be quarantined again during this phase
WITH PAPER ARMOUR AND WOODEN SWORD
Tracie McBride
Tracie McBride is a New Zealander who lives in Melbourne, Australia. Her work has appeared in over 80 publications. Her debut collection Ghosts Can Bleed contains much of the work that earned her a Sir Julius Vogel Award. In recent years she has lost an aunt, an uncle and her father to The Foe. Come visit her at http://traciemcbridewriter.wordpress.com/.
Life in the city has been peaceful and prosperous since time immemorial, so when the stranger comes to the gates and m
akes his outrageous demand, you laugh in his face. And you are not alone in your reaction.
“I am the Foe,” he says, “and I declare war on your fair city. You must send me your children to do battle.” His black, wide-brimmed hat is pulled low over his eyes and his shapeless coat flaps in the breeze.
Some of the more gullible in the crowd lean past him to see who stands at his back. Although the gateway is busy with the coming and going of merchants and citizens, the stranger is alone; the throng parts and eddies about him, leaving him unjostled, untouched. He has no army behind him with which to battle, and even if he had (especially if he had), your children will not be pawns in some madman’s game.
“Begone, fool!” says one of the guards, although he is genial enough about it; he has no need for aggression, for nobody ever makes more than the most minor of trouble in this city, and his position is merely token.
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