Hannah Was Here: D.R.E.S.S. an Alarm That Must Be Heard

By Nancy Szakacsy M.S. LMFT

"Nancy's candor and willingness to share her family's profound story is a gift. With painstaking detail, she bravely opens an intimate window into the heart wrenching roller coaster of hope and loss. I was enraged, devastated, and moved with every turn of the page. Hannah Was Here is an alarm that must be heard.
~Brian Aubert- Silversun Pickups



"What Nancy has accomplished is nothing short of awe inspiring. There are so many lessons to learn from Hannah's story, with beautiful honesty through Nancy's eyes. Nancy brings recognition to the world and perhaps more importantly the medical community of "DRESS," the undisclosed and potentially lethal complications of pharmaceutical products and policy and the need to stand up and have a voice. How could one little girl touch the lives of so many? Hannah's fight, both in life and death, carried on by her inspiring family will empower hundreds of thousands to choose the beauty of morality, courage, and love. Quite simply, Hannah has changed my life. Thank you.

~Jamie Taylor, MD



Hannahs story is deeply moving and shocking. To this day, Hannah is accompanying me. How was a single drug given for such benign skin lesions allowed to strike her down and cut short her promising life? This tragic story is urging us to better understand DRESS, and from now on drugs associated with DRESS should be avoided when unjustified.

~Dr. Vincent Descamps- French expert on DRESS




"HANNAH WAS HERE is a tribute like none other I have ever read. Nancy is a one woman army who holds the strength of a country with the touch of a mother's heart. This book should be read by all, young and old, and used to educate the world. Thank you Nancy, from the bottom of my heart."

Evan Lesser, Film Producer.



I've never read anything so quick. I'm a slow reader by trade--which makes being a paper grader hard work--so, I know what I'm saying. There were parts that were impossible for me to read. And there were times when I had to wipe through tears to see.
You've poured your soul into this writing-and the work you're doing now to inform parents and kids of the dangers of prescriptions and how they're prescribed is such a fitting tribute. I'm just so incredibly moved by what you've written here. Thank you so much

~Mark Storer English Teacher and Freelance Writer




I knew Hannah as the principal of the school that ran her Bully Buddy program and from living next door to her. Still, none of that prepared me for this raw look at the emotional upheaval the entire family experienced. Its unbelievable reading all that Hannahs young mind and body endured. Nancy leaves out nothing, telling her families journey and how they came to be enmeshed in a united battle for Hannahs life. The grisly details of hospital life are intertwined with family history, emails, and journal entries from a remarkable young lady.
I knew it was to be a cautionary tale, important for families to read before deciding about acne treatments, but this is a compelling story for any reader.
~Patty Kingsley Principal

• Language: English
• Publisher: AuthorHouse
• Release date: Aug 17, 2014
• ISBN: 9781496923127

Nancy Szakacsy M.S. LMFT

Nancy Szakacsy M.S. LMFT is a licensed marriage and family therapist and addiction expert. She has been a featured mental health expert on The Thread with Suzanne Somers, Fox and Friends “The Big Story,” E! Channel’s “Addicted to Pills,” Hollywood 411, Fox News, and KNX 1070 radio and continues to contribute regularly on local and national radio. Nancy is married twenty-eight years to Doug Szakacsy, a chemistry teacher who remains a guitarist and songwriter. The couple has two children, a teenage daughter and honor student, Hannah, who created Stop the Bully and Bully Buddies and a son, Samson, who played quarterback for Arizona State. A 2010 Pat Tillman Scholar, Samson’s work with the San Carlos Apache Tribe landed him on the cover of Sports Illustrated. He’s a singer/songwriter best known musically for his albums Chasing Truth, Angels, Light Loves Dark and his new original album Dear You, Love Me, co-created and produced with his dad, Doug Szakacsy.

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© 2014 Nancy Szakacsy M.S. LMFT. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Credits to Louis Jones for cover artwork

Published by AuthorHouse 08/12/2014

ISBN: 978-1-4969-2313-4 (sc)

ISBN: 978-1-4969-2312-7 (e)

Library of Congress Control Number: 2014911779

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

CONTENTS

Thank You

Forward

Preface

Chapter One

Black Out

Ppo, February 2011

Friday, March 18, 2011

One More Round

Chapter Two

Motherless Daughter

This Is Not A Dream

Yin And Yang, 1977

Chapter Three

Loved Ones

Prednisone Taper, April 2011

Ekg

Full Cardiac Arrest

Rent, 2010

Chapter Four

Bam

102 Days Begins

Dance With Nance, 1979

Getting Schooled

Chapter Five

Creating Family

A Beautiful Grind

Fourth Leg

Bully E-Mails, March 23–24, 2010

Summer 2010

Mat And Matt, Fall 2010

E-Mails With Mat

Letter From Maggie

Chapter Six

Stories Of Hannah

Samson

E-Mails With Matt

One Moment

Chapter Seven

Bully

All For One And One For All

Choices

E-Mails With Dad

Compass

Hannah The Great!

Chapter Eight

Helicopters And Skateboards

Summary Of Hannah’s Day

Most Genuine Mother’s Day Ever!

Dress

Food Carts

Chapter Nine

Amazing Spirit

The Lift Team

Pamphlets

All The People At This Party

Who Am I?

Chapter Ten

Rose

Good-Bye Forever

Afterlife

Visits

Letter To Dr. Vincent Descamps

Reply From Dr. Descamps

Chapter Eleven

The Visit

Quest For Sunny D

Hospitalist

Seventeenth Birthday, July 16, 2011

Flood

Chapter Twelve

Later Days.

The Week Before She Died

The Night Before She Died

Life Review

Samson

Maggie’s Words At The Funeral

Letter From Mat

Chapter Thirteen

Keep Moving

What Is Dying Like? By Samson

The Struggle By Samson

Hannah’s Room

Hannah’s Medical Journal

We All Pay

Chapter Fourteen

From Dad

Motherless Daughter, Daughterless Mother

The Show Went On

Fizzy Lifting Gifts

I’m Telling

Mission Statement

Posts

Sign, Sign, Everywhere A Sign

Letter From Dr. Descamps

Chapter Fifteen

Time Travel

Circles

Walls, By Samson

Wake By Samson

Mr. Toad’s Wild Ride

Her Story

Glossary Of Medical Terms

About The Author

In memory of Hannah Victoria Szakacsy

1994–2011

THANK YOU

My most sincere thanks:

To all those named within this book who unselfishly stepped forward with direct or indirect contributions, putting aside their rightful veils of privacy for the authenticity of this manuscript and its cause.

To my dearest love and husband Doug, there are simply no words.

To Samson; nothing I am is without you.

To Dad; thank you for showing me what kindness looks like.

To my sisters, for being the example of how vulnerable the world is, how tremendous grief can be when it rests inside you, and how love overcomes every bit of it. Thank you for your transparency, your innocence, and your capacity to rise above trauma. My sisters, your incredible strength and unconditional love astound me. You remain a pair of warm blankets wherever I am. Thank you for coming full circle, being there always, and loving me so much. I couldn’t love you more.

To my brother, for walking lovingly alongside me while I wrote this book and for holding the experience over and over again; for organizing and editing such costly, precious moments; and for the gift of a friend I get to call brother. I couldn’t have done this without you.

To Jamie, for going all in just when it seemed the struggle was over; for your humanity and strength, your exemplary example of doctor.

To Traci, for your immeasurable friendship.

To Rose, for thirty years of quality conversation and showing up at the precise moment of necessity.

To Alessondra Ali, for your unending love, ethereal voice, and above and beyond creative efforts. More than anything, Hannah wanted you to believe in yourself. She will meet you in the stars but no doubt is cheering you on as you shine.

To Justin, my BFF, for all of who you are.

To Karp, for listening, hearing, and supporting me through everything; for unselfishly putting my family first; and for being there in every way humanly possible.

To Kevin, for wearing the hat.

To the Harris Family, for constant invitations and filling our glasses, tummies, and hearts.

To Jessica and Laughing Dog Inn staff, for taking the reins without notice, for being instant family, and for lovingly treating the rest of my family as well as you did Charly those unforgettable 102 days.

To Louis and Susan Jones, for One Voice, its beauty runs deep. Thank you for your artistry and authentic humanity.

To Buddy Dow, for taking a stand and believing in a stranger.

To Alan Bowers, for years of expertise and a willingness to share it.

To the team at Authorhouse, I thank you.

FORWARD

This is Nancy’s book. I am her older brother. I gave her away at her wedding to Doug, and I have helped when I could. It was a privilege to assist with this book.

The ordeal that Hannah, Nancy, Doug, and Samson endured is beyond human capacity for suffering. The survivors are still recovering, and this book is a large part of the recovery effort. Even reading about those 102 days in critical care, if they weren’t broken into small doses and relieved with background anecdotes, would likely exceed the reader’s credulity and capacity for grief. The emotional peaks and valleys were simply too extreme.

That is why Doug, Nancy, and Samson bore the brunt of it themselves. They updated me only when some kind of stability seemed to have been reached or some turning point passed. They shielded me and others, and we in turn protected other family members and concerned friends by smoothing the roller coaster ride for them.

Uncle Dan’l

PREFACE

When I think beautiful, I think you.

—Samson

I write this as mother and friend, for love, and for the countless others I know are out there—for those unknown, but not nameless, children and adults who have already died or currently lay afflicted. I write in the hope that few will have to endure what Hannah did. I have always known death. It is scattered in the pieces of my life.

Chapter One

BLACK OUT

April 2011

Five minutes into the yoga class, Hannah blacked out. Her face turned white as a ghost. When she came to, she said she couldn’t see. Her pulse was almost nothing, and panic set in. A trainer at our gym, Chip, helped me get her outside. He brought Hannah a drink and a protein bar. I ran to my car to grab my phone and dial the infectious disease doctor Hannah had recently seen about an allergic reaction to an acne drug. The voice on the line said the doctor was with a patient.

He can call you back in twenty minutes.

I wasn’t going to wait. I called my husband, Doug, at school and then got Hannah in the car. We met up halfway, in Camarillo. I pulled in the parking lot just as my cell rang. It was the doctor. Doug was walking over to the car. I felt a sense of relief. The doctor sounded annoyed. I started telling him the details.

We were in yoga class, and she just blacked out.

Look, I am not concerned. Hannah will be fine.

With all due respect, doctor, she blacked out cold for a significant amount of time. She looks completely white. We were doing yoga!

Before I finished, he interrupted. I’m not concerned with what you’re telling me, he said arrogantly. "I am not concerned with what you’re telling me! Just take a break from the yoga. She is fine."

I wanted to scream at him, but Hannah was so sick. I thought, This guy has issues with women, or maybe he’s … fuck it.

Well, I’ll let Hannah speak to you then, I said and handed her the phone. Maybe he would believe her. Hannah told him what had happened. I put my ear to the phone.

Hey look, I think you’re just having anxiety, he said, his tone at least gentler, if still patronizing. Don’t do any more yoga. I’ll see you next Tuesday for your appointment."

Doug had been listening to this as well. We were in shock. The whole thing seemed weird. Our emergency was reduced to a fit of anxiety. It didn’t feel right.

Hannah seemed to be feeling better. She asked for a smoothie. Doug drove her to the Daily Shake and then straight home.

We spent the next few days watching movies, staying mellow. That Friday, Hannah felt terrible. I dialed the doctor again and left a message. His nurse returned my call instead of him, and I blew up.

What makes the doctor so confident? Hannah is getting worse. When we were in crisis the other day, he was condescending. He acted annoyed. If he ever treats me like that again, in front of my daughter, in an emergency situation, we will have a huge problem. I’m not comfortable seeing him, but I need his care for Hannah right now.

PPO, FEBRUARY 2011

Twice a year, Hannah was getting medical facials at a local doctor’s office. I would pay the seventy-five dollars, and we’d be on our way. It wasn’t a regular thing, so the convenience of a local doctor won out. When it came time to start up again, Doug thought we should use our PPO. Look in the Thousand Oaks or Westlake Village area. Research doctors up to an hour away and find someone good. We have a PPO; let’s use it. I found a Stanford-trained, board-certified dermatologist with a skincare institute.

We were in good spirits the day of the appointment. Trying to be timely, I turned right on red just a half block from the doctor’s office and got a ticket. Apologies, officer. I can’t believe I did that with my almost driving, sixteen-year-old teenager in the car. I didn’t see the darn sign.

Sitting in the waiting room giggling and blowing off ticket steam, we filled out the new patient paperwork. Checking the boxes, no, no, no, laugh, laugh, laugh. Then we got called in.

The office was big, bright, and clean, with the doctor’s family portraits displayed classically on the walls. The doctor asked Hannah questions and examined her skin. He discussed medical facials and insurance and then prescribed a topical cream. Hannah’s appointment seemed a wrap, but then he asked about a few more things. Before we knew it, we had a prescription for an acne drug. I jumped in and told him we didn’t take medications except in extreme situations. I told him that my husband Doug, Hannah’s dad, taught chemistry and was adamantly against unnecessary medications, especially antibiotics.

The doctor smiled when I told him about Doug’s long lectures and how we would never hear the end of it. Still, he reassured us of his professional comfort with the medication and how it was absolutely safe. So I asked him if he’d give it to his kid, and he said yes. I could hear Doug’s lectures in my head, so I mentioned another acne drug that had caused serious side effects; colon issues and suicidal ideation I had heard were associated with acne drugs. The doctor smiled kindly, shook his head, and just said no.

Hannah and I went straight to the pharmacy to fill the prescriptions. Hannah said she would start with the topical cream first. I’m worried the pills will dry me out.

Life went on. Three weeks later at her best friend Maggie’s sleepover, Hannah woke up with golf ball-sized glands behind her neck. She was scared and called Doug. Dad, you were right. I wish I had listened when you said not to sleep on wet hair. I really feel crappy.

She felt so uneasy she didn’t take the pill that morning and never took it again. Monday morning, I found a family doctor to see her. We didn’t have one in place, a perk of good health. Neither Hannah nor I told Dr. R - - about the pimple medication. I didn’t know she had decided to start it, and she still thought the culprit was her wet hair. We showed him the giant glands and other swollen areas. He was old school, patient, and very thorough. It may be mononucleosis. Blood work would tell.

A few days later, a full body rash appeared; Hannah had lumps, bumps, and nodules from neck to toe, including her private parts. Scared shitless, I called the doctor and then started searching for answers online. Doug naturally began forming hypotheses. His knowledge had a painful downside.

With every click, the web brought up allergic reaction. I asked Hannah if she had eaten something different at Maggie’s house or if she thought something had bitten her. That’s when Hannah told me she’d taken the drug.

That Saturday afternoon at his office, Dr. R said, Honestly, this is out of my family practice area. My heart thumped, but I knew we’d get through this.

Dr. R referred us to an infectious disease doctor, who quickly diagnosed Hannah as having an allergic reaction to the prescribed medication.

FRIDAY, MARCH 18, 2011

Excerpts from a Letter from Dr. S to Dr. R

HISTORY OF PRESENT ILLNESS: The patient is a 16 year old Caucasian girl who has enjoyed generally excellent health. Her only significant past medical history was excision of a sebaceous cyst from the medial left knee at about age 12.

Sometime in February 2011, the patient saw Dr. P, dermatologist, who prescribed minocycline to control facial acne. She took the medication as prescribed for 21 doses, and then during the first week of March, she developed an acute illness, initially characterized by the development of posterior cervical lymphadenopathy, which was