"Out of Breath" A Memoir: Sean Henderson and His True Adventures With Proteus Syndrome

For Sean

Who taught me how to mother

And so much more.

Copyright © 2019 by Lindsey Henderson Preece

All rights reserved. This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.

Print ISBN: 978-1-54397-291-7

eBook ISBN: 978-1-54397-292-4

Table of Contents

Acknowledgements

Forward

Chapter 1: 1st Emergency

Chapter 2: Move to San Francisco and a diagnosis

Chapter 3: Grateful Dead Concert and Home-schooling

Chapter 4: National Institutes of Health

& the Children’s Inn

Chapter 5: Newspaper article

Chapter 6: Back to NIH — 1996

Chapter 7: Pneumonia & Little Italy

Chapter 8: Make-A-Wish

Chapter 9: Proteus Conference

Chapter 10: NIH — 1997

Chapter 11: Invitation to Lourdes & 48 Hours — 1999

Chapter 12: The Grace of Lourdes

Chapter 13: U.S. Space Camp

Chapter 14: Laguna Seca

Chapter 15: NIH — MARTHA’S VINYARD, 2001

Chapter 16: Emergency on Martha’s Vineyard

Chapter 17: Back in California — 2002

Chapter 18: Hospice

Chapter 19: September 18th

After…

Memories: Random Memories

Eulogies

Miscellaneous

Acknowledgements

With gratitude…

I want to thank so many people that were in our orbit. Family and friends and strangers helped us in ways I can never repay

To Father Charles Gagan, Margaret Walden and Mary Spohn Romo; you welcomed us into the incredible community of St. Ignatius Church and changed our lives. And to all of the wonderful Jesuit’s that have come into my life…you’ll never know

To Kim Green; warrior, goddess, general bad-ass, animal rescuer (and that’s just before lunch!) and the Proteus Syndrome Foundation and those beautiful kids, there are no words…

To NIH, Dr. Biesecker, Dr. Michael Cohen and all the doctors, nurses, researchers and genetic counselors, my gratitude always

To The Children’s Inn; Suzanne Oberlander and Laura king and the many volunteers, you gave us a sense of home and friendship during such a difficult time. I’ll be forever grateful. Love you!

To Dr. Melanie Miller; thank you, thank you, thank you…

To Sean’s hospice nurse; Patti Pian…an angel if ever there was one

To my wonderful husband John, my family and dear mother Norma,

And finally, to my bestie…Sally Preece & Lee Assenmacher and the entire Preece clan…

Where would I be if we hadn’t met? I love you all.

Forward

I wrote this book from my journals that I kept during Sean’s nine year war with Proteus Syndrome. It’s taken me 15 years to finally let go of these pages. This isn’t one of those feel-good books where the mother finds strength and purpose in her child’s death. Frankly, I’m still a wreck. Sean’s death blew a hole through my soul, through my very being. While I wrote about what I was going through and what was every mother’s nightmare, I wanted to tell Sean’s story of grace and incredible courage. While most people who knew us knew about all the surgeries and trips to the National Institutes of Health (NIH), most people had no real idea just what Sean went through those nine long years. An old soul and wise beyond his years, he would plow through each challenge with his customary intelligence, analytical mind and wicked sense of humor. While it’s sad what Sean went through, he would never want you to be sad or feel sorry for him. Ever. If you spent any time around us, you know how much we laughed and what a good time we had in spite of Proteus. Did you ever meet a person so present, so beautifully alive and joyous as Sean? When you remember Sean’s sense of humor, quick wit, and his love of animals, I bet you smile.

Chapter 1

1st Emergency

The world changed for us on August 3rd, 1993. For me, the moment was listening to my answering machine when I came home early from work that day. For Sean, it was his body making a statement of war and surrender. The air was thick and stifling when I got to hospital’s emergency room, and the time seemed just a little off. Sean is lying on his left side with a sheet covering his naked body. Someone tells me he has a huge ball of bloody tissue hanging from his rectum. He is obviously scared and uncomfortable, but seems so relieved when he sees me. Mommy, mommy he says, in the tiniest voice that I hadn’t heard from him in years. That sound reached through me and just squeezed, wrapping itself around every cell in my body. My mother and step-father Mac are standing next to his bed. No one seems to know what is going on or why this has happened. My mother tells me that Sean had felt fine all morning, and at around noon Sean came into the house and had to go to the bathroom. Sean had been staying with them for a couple of weeks during the end of his summer vacation. He had been in the bathroom a long time and my mom had kept checking on him to see if he was all right. A few minutes later she heard him screaming in pain. His rectal tissue had come out and he was bleeding. Mac had scooped him up and they drove to the hospital a few miles away. As it turned out, I had left early from my job as executive chef in Los Angeles. I was going to stop home in Pasadena, take a quick shower and change my clothes. There was a movie I wanted to catch, taking advantage of rare afternoon off. When I got home, there were frantic messages from my mother, who had called work, then my house, desperately trying to find me. I called the E.R. and reached my mom, and was told to get there as soon as I could. As I drove like a maniac from Pasadena to Orange County something was already settling in me, knowing somehow our lives were changing and this was serious. I remembered as I drove to the hospital that a couple of weeks before, I had gone into Sean’s room around midnight to check on him before I went to bed. It was the end of a hot July and Sean was lying on top of his covers, sleeping soundly. A full moon lit his bedroom and I was startled to see Sean on his side, in a fetal position. I could see every rib poking out, his skin sort of draped over his bones. Sean had always been a skinny kid and for the last two years I constantly fretted about his lack of appetite. He seemed to only like soft foods like soup, pasta or any kind of noodles. I often called him Noodle. He ate very little meat or anything hard and chewy. I had spoken to his pediatrician several times about his weight and was always assured everything was fine. Sean looked so skeletal, it had frightened me. I knew in my bones something was wrong. Sean had an upcoming doctor’s appointment at the end of August and I had made a note about it in a notebook I kept about doctor appointments and vaccines, to talk to him again about his weight. I knew something was not right and now my worries had come to fruition.

I was a single mother, working sixty hours a week, and now this child was in deep trouble. When we finally were able to speak to a doctor on duty, he had no better idea than us about what was going on. Sean was reasonably comfortable as long as he wasn’t moving but he was coughing sporadically. When the doctor noticed this, he ordered an x-ray. We waited as Sean went to radiology and would wait another half hour to get the results. Then I noticed two doctors walking towards me, looking very grim and avoiding eye contact with me. They reached me, each on one side of me, one with his hand on my shoulder and the other with his hand on my arm. They told me Sean had stage 4 lymphoma. No question, cannot radiate a stage 4. Sean is seven years old.

I stared blankly at the doctor’s mouth. Everything I seem to know to be true starts imploding. Your life and your child’s life have just forever changed in that moment. His beautiful future, his wife and children, his successes and dreams are gone in a breath. A heartbeat. I know I went into a kind of a shock as I tried to absorb the news that Sean had terminal cancer.

I was told Sean would be taken upstairs to surgery in a little while to remove the bloody mass. In a few days he would be transferred to Children’s Hospital in Orange to see about removing a large tumor in his chest. There were decisions to be made and a lot of details to sort out. I also had calls to make: my best friend Sally in Sacramento, my boss Cary who was on vacation but checking his messages every day, my brother in San Diego and Father Cobb, the Jesuit priest I worked closely with. Sally would be able to fly down in a couple of days and stay through the weekend. It was all so surreal being in that place, the noises and smells, the chaos…all the while our real lives seemed to come to a complete halt.

There had never been any other signs, besides Sean’s weight, that anything had been wrong. Sean had been a dream baby who turned into the most amazing child, so full of energy and life, with such sweetness and light about him. He had the most beautiful brown and soulful eyes. Everyone who met him was drawn to him, and he had this calm energy that was unusual in a child. I counted my blessing every day. I was able to stay home with Sean until he started kindergarten, working as a chef and caterer. I also ran a wedding cake business out of my house. We were together all the time, or so it seemed. Sean conquered each stage of life text book early and I was always conscience to keep him challenged and stimulated. That part was easy. I also worked like a demon after he was in school and often times was able to bring him to work with me when I worked on weekends or for parties. He was very much a part of my working life, being able to help me prep vegetables or whatever he could handle. I have a memory of Sean standing on a chair, a waiter’s apron tied around his tiny waist and just about hitting the floor. He is peeling a case of baby carrots for dinner service. He was four years old then. I loved every minute of being Sean’s mom.

The rest of that first day was spent getting Sean into a room and preparing him for surgery. The doctors would freeze the mass of tissue and remove it. I remember sending my parents home in the early evening. I would stay and wait by myself and while he was in surgery, make phone calls and lists of things to do. I would go