My Porcelain Doll

By Sherry Anne Coombe

My Porcelain Doll is Sherry Coombe's, poignant tribute to her late daughter and a moving memoir about walking side by side through Heathers struggles and triumphs during cancer. Sherry traces the journey she and Heather shared through some of the toughest challenges and sweetest moments of fighting cancer. Genuine, intimate and unconditional love, My Porcelain Doll is a story of hope, joy and sadness that only a mother could write.

"Then came a bunch of words like aggressive, really bad, tumor, spinal taps and on and on. Of course it still didn't sink in how bad he thought it was until he started talking about transplant team and City Of Hope. I knew then I was a really sick lil gal. I think that was the first time I was really, truly scared that it might be too late."

-Heather Coombe

• Language: English
• Publisher: Xlibris US
• Release date: Sep 4, 2013
• ISBN: 9781483688824

Sherry Anne Coombe

Sherry has been blogging since the day her daughter received her cancer diagnosis. Sherry’s desire to share Heather’s story and reach out to other families dealing with cancer led her to write this memoir. Sherry is a homemaker by profession and also a wife, mother and “Mimi” who resides in Arizona. This is her first book.

Book preview

Copyright © 2013 by Sherry Anne Coombe.

Library of Congress Control Number:                    2013915296

ISBN:         Hardcover                                    978-1-4836-8884-8

                   Softcover                                      978-1-4836-8883-1

                   Ebook                                           978-1-4836-8882-4

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Rev. date: 08/30/2013

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TO MY PORCELAIN DOLL—

One of my greatest privileges was to be your mother. I was blessed the day you entered my world. Being the middle sister, you were the peanut butter and jelly of our family sandwich. Your role was the one that held our family together. Without you we have bread but no middle. This is my record of the last and most difficult part of your journey here on earth. The one you fought bravely as the strongest young woman I know. I hope you realize how proud I am of you. While you are in heaven, mind your manners and you

better not be late when I get to the gate.

Did I ever tell you, you’re my favorite? I love you to the moon and back.

Momy

ACKNOWLEDGMENTS

To Dr. Fastenberg, Heather’s oncologist, thank you for taking Heather to be your patient, caring for her and allowing her to be sedated for spinal chemos.

To the nursing staff and nursing aides at Baywood Hospital 6 South, thank you for allowing Heather to be the princess on the floor; your love and support for all of us was outstanding.

To the ICU nurses at Baywood Hospital, thank you for caring for Heather during her most critical time. For Monica, Tracy, Kim, and Racheal you have my deepest thanks and love for treating us like people and not just patients.

To Nurse Jan, Dr. Chris, Nurse Deb, Nurse Patty, as well as the staff at the ATU, thank you for your care of going above and beyond when Heather was concerned. Changing your schedules and fitting her in no matter what. We greatly appreciate your kindness toward us and always treating Heather with love and concern.

To Stacey, you began as Heather’s nurse, then her hang-with buddy and now a BFF for me. Words cannot begin to express my thanks and love for you. What else could I expect from Heather’s number 3 emergency contact?

For my Sandy, my bestest best friend in the world. We have been together forever. You are my only sister in the world. I love you forever. Thanks for sticking with me through the good and the bad.

For my daddy, Jim Blake, thank you for choosing to be my daddy the day you adopted me. You gave me wings and always let me be myself. I hope you are enjoying Heather in heaven with you. You have been gone too long, but I love you and think of you often.

For my sons-in-love, John Wesley and Paz, thank you for looking past our forever broken family and loving us anyway. It is not easy to deal with all our crazy emotions. I am so thankful you decided we were worth it.

For my Violet, God’s gift to me, you were my ray of sunshine during some very dark days. Thank you for nearly filling the hole in my heart. Being part of your life is amazing and I love you to the moon and back.

For my Jennifer and Wendy, grown under my heart and in it, I wish that I could have spared this from our family. I am so proud of you both and the beautiful women you have grown into. I am looking forward to a lifetime of memories and good times as you begin you lives and families.

Last, but not least, my husband, Bill (insurance guy), for always believing in me and accepting me with open arms no matter what. For always supporting and allowing me to follow my dreams and then helping me to make them come true. Thank you for deciding to share your life with me.

Thank you for deciding to share this journey with me in reading my book. I hope it gives insight into the tough battle cancer can bring into a family’s life.

CONTENTS

Introduction

PART 1: CANCER

Chapter 1:   Doctors, Testing, Will We Ever Have an Answer?

Chapter 2:   A Biopsy and More Waiting

Chapter 3:   The Initial VisitBoy Was I Surprised

PART 2: TREATMENTS BEGIN

Chapter 4:   Chemo Doesn’t Make You Sick at First

Chapter 5:   Test Results Are In and I Finally Understand the Treatment Plan

Chapter 6:   A Small Little Blood Clot

Chapter 7:   Mom’s Job Just Got Harder Firings, Shots, and Fighting with Insurance

Chapter 8:   Blood and Platelets Such a Lifesaver

PART 3: REMISSION ACHIEVED

Chapter 9:   Why Do I Have to Continue?

Chapter 10:   Friends, Mothers, and Drugs

Chapter 11:   It’s a Dry Heat, but at Least the Hospital Has Air Conditioning   

Chapter 12:   I’ve Been Cooped Up for MonthsIs This Ever Going to Be Over?

Chapter 13:   The Final Chemo Rounds and No Fanfare

PART 4: LIFE BEGINS AGAIN

Chapter 14:   Maintenance Begins and Life without a PICC Line

Chapter 15:   Amy Grant and the Grand Cancer Ball

Chapter 16:   Princess Heather’s Twenty-first Birthday

Chapter 17:   New Year and New Beginnings

Chapter 18:   Baby Violet

PART 5: BREATHING IS DIFFICULT

Chapter 19:   Something Is Not Right

Chapter 20:   Worried Cancer Is Back

Chapter 21:   Relief Before the Trauma

Chapter 22:   Spiking a Fever

Chapter 23:   A Two Long Days

PART 6: ICU

Chapter 24:   The Mad Rush into ICU

Chapter 25:   This Is Not a Happy Place

Chapter 26:   Is a Vent Necessary?

Chapter 27:   Up and Down I Want Off This Roller Coaster

Chapter 28:   Tucking in Our Turnip Each Night

Chapter 29:   The bad, the Terrible, and the Ugly

Chapter 30:   Collapsed Lungs, How Many Times Can We Do This?

PART 7: SAYING GOODBYE

Chapter 31:   Bad News in Doubles

Chapter 32:   The Day Heather Die

Chapter 33:   The First Few Days After

Chapter 34:   The Funeral

PART 8: LIFE’S NEW BEGINNING

Chapter 35:   Confessions of a Grieving Mother

Glossary of Terms

INTRODUCTION

I never imagined cancer entering into my world the way it did. Somehow I think we imagine as we get older, we will be the ones with the illnesses and cancer. My three daughters, Jennifer, Heather, and Wendy had made it through high school and never had any major illnesses, accidents, or surgeries. I had a false sense of security that we had made it and my girls who were grown for the most part had survived.

Heather, my middle daughter, entered my life in a huge hurry on December 10, 1987, right before midnight. She was a normal, healthy, blue-eyed, curly-haired, blond little girl. Around the age of three, one of my nicknames for her was Lil Dolly. It could have been that her room was decorated with dolls or that she was so cute she looked like a little dolly. When Heather was little and began to spell, she found no need to have two m’s in Mommy, so she took one out and always even as a big girl has written Momy on everything. As she grew older, she had the fairest complexion and called herself My Porcelain Doll when I would call her My Dolly Girl.

Heather was a vibrant, beautiful young woman just beginning her life when two forms of blood cancer attacked her body. Right before her diagnosis, my husband, Bill, and I had done some looking at leukemia and lymphoma websites. The information on those sites was cold, medical, and very generic. It honestly scared me to death to look at the treatments, life expectancy, and the chance of cancer returning. There really did not seem to be much hope. I decided until we knew what kind of blood cancer she had I would stay off the web and quit reading about all those very bleak outcomes on the medical sites.

The first days after Heather’s diagnosis, I was filled with questions and I wanted to talk to actual people with blood cancer. I did not want all the medical words and terms; I wanted the real personal story of what happens during treatment. How did it feel? Are you still in remission? Did you have a bone marrow transplant, why or why not, and on and on with what felt like a million and one questions.

I took one afternoon away from the hospital to go to the local bookstore and look for books about cancer. What I found was—nothing! I could not find many true-life stories written by survivors about blood cancer. Of course breast cancer has the most information it seems and the most stories written about it probably because it has the most survivors to tell their stories. I just did not want a medical book written by a doctor about my daughter’s cancer.

When Heather began her journey, my thoughts were we should document her cancer with photographs and blogging and maybe it would be a book someday. Bill, being an avid photographer, had bought me a Nikon D40 SLR a couple years before this all began. I began taking photos before we even were admitted into the hospital. Bill and I continued to take photos until the very end. I feel our photos show the true face of cancer and what it does to the patient as well as the family.

In the early morning hours of April 11, 2008, the day after Heather was diagnosed, I began Heather’s page on the CaringBridge website to keep family and friends informed with what was happening. For those who have never heard of CaringBridge this is a website that is free to anyone coping with an illness that needs to get information out to many people at one time. It is available online or mobile twenty-four hours a day. I sent an e-mail to our friends and family with the web address so they could follow the events that happened in our day-to-day lives. Instead of trying to call everyone, I just updated the CaringBridge site with prayer requests or what we did during the day. It was an awesome way to get information out to the more than five hundred people all over the world that followed and prayed for Heather and our family. Oftentimes in the book, I have included excerpts from my CaringBridge blog that were written during the time of our cancer journey; they are in italics.

Heather’s story did not end the way I planned, hoped, or envisioned. My heart’s desire was to write this book and have her sign the books since this was her success story. She was supposed to have the fairy-tale ending after a near-perfect cancer treatment with no infections or delays in treatments and only a couple complications. I never dreamed that the aftereffects of cancer could go so bad so fast.

My decision to go ahead with the book is to be a lasting tribute to Heather. She fought cancer with everything she had and never gave up. My hope and prayer is that if you or a loved one is battling cancer, that this true, honest look at cancer would be encouraging to you.

PART 1

CANCER

CHAPTER 1

Doctors, Testing, Will We Ever

Have an Answer?

In October 2007, my daughter, Heather, noticed a lump under her chin. Her dad, Bill, and I thought it might be a lymph node. She felt her armpits and other places looking for any other lumps. But there were no other lumps that could be felt. She had no fever, nothing. I looked up lymphoma symptoms online, but Heather had none of the symptoms. I asked her repeatedly if there was anything else that was swollen or didn’t feel right. Her answer would always be no. We had no clue that probably the first lymph node to swell was inside her abdomen. At the time of diagnosis, the one in her abdomen was the size of a small apple. This was the lymphoma taking over her body.

December 2007 was a very stressful and busy time for Heather. She was taking a full course load at Mesa Community College and working full-time at Target. It was right in the middle of finals and the rush of the holiday season. Heather became very worn out and was extremely exhausted. She began to lose weight even though she was eating a ton of junk food. She developed an eye infection and was seen at Urgent Care. There seemed to be no alarm with the lump under her chin and no mention of enlarged tonsils. Even though the lump under her chin was still there and it had not changed.

Beginning in January 2008, Heather became more tired and was losing a lot of weight. She still tried to work and attend classes even though she was skipping classes and called out of work many times. On January 25, Heather went to Urgent Care again not feeling well. They suspected the flu of some kind and told her to stay home for five days. Heather was feeling no better, so on January 30; I took Heather to see our primary care doctor. Dr. Downey suspected mono and ordered blood work and an ultrasound of her liver and spleen. Dr. Downey had made a comment about how incredibly enlarged Heather’s tonsils were. All the tests came back NORMAL. There was nothing, absolutely nothing, to indicate a problem of any kind. No elevated white blood cell count or lymphocytes. Heather told me that she just wanted to be home all the time and not leave me. She just wanted to be with her Momy, Heather’s term of endearment for me, and felt panicked when she was away from me. This was very odd as Heather had never been like this in her entire life. Deep down inside she knew something was wrong.

Heather began having problems sleeping in February 2008. She had a tickle in her throat that would keep her up coughing most of the night. She often fell asleep with cough drops in her mouth. Heather began to miss classes. She had to decide each day whether it was sleep and school, or sleep and work. She was totally exhausted all the time. She also developed a rash that was very odd. The rash would develop during the day. It appeared as strange red-looking circles under the skin on her arms, tiny bumps on her back, and blotchy patches on her chest. The rash would disappear by morning, and her skin then became very itchy. Heather would take showers to help the rash and itching. She would have me put lotion on her back and neck. New small lumps began to appear all over her neck and behind her ears and they did not go away. She was still extremely tired and continued to lose weight even though her face and neck appeared to be large because of all the swollen lumps.

I took Heather to see Dr. Downey again on March 6, 2008. I told him all of Heather’s symptoms and he had no idea what was happening. He looked in her mouth and commented again about her enlarged tonsils. I told him this was the second time he had mentioned them. He asked me if I had looked at them. I told him no as I had no reason to as she had never complained of a sore throat. Dr. Downey told me to look at them. The moment I saw them I knew this must be the problem. They were so enlarged they were nearly touching in the middle as well as being dark blood red. Dr. Downey suggested we go see an ENT (ear, nose, and throat specialist). He felt all the swollen lumps in her neck and behind her ears and still did not think anything of it.

Dr. Downey’s office gave me a list of ENT doctors. I had no reference to go on, so I made an appointment with Dr. Chow. On March 17, 2008, when we walked in the office I knew we were in the wrong place. The waiting room was horrible, and I should have known then to walk away. Dr. Chow was very arrogant and rude. He took one look at Heather, listened to her symptoms, and told me it was either cat scratch fever or lymphoma and we needed a needle biopsy. The office would get the preauthorization from the insurance and call me to set it up. I waited two days and called to see what was happening. The doctor’s office told me they sent it to the insurance and I never heard back. So I called the insurance to see why this was taking so long. The insurance told me they never received any forms for Heather at all. So I immediately began looking at the list of doctors to find a different one. We had wasted so much time and I felt like the doctor’s office didn’t care about us at all.

I called Dr. Bardell’s office on March 20. They told me they had a cancellation for Monday, and I took it eagerly. Monday was only four days away. When we saw Dr. Bardell, he listened to everything and examined Heather. He told us he was not sure, but the original lump was probably not a lymph node. He felt her tonsils were so badly infected that it had caused a massive infection. Looking back I believe that Dr. Bardell knew what was wrong and didn’t want us to panic until he knew exactly what it was. He is too good of a doctor not to know the signs. The easiest way to begin was a CT scan to see what was going on. It was scheduled for the next morning. We arrived at the imaging lab at 8:30 AM for the 9:00 AM appointment. Heather was very calm considering she needed to have a small IV to inject the contrast scan dye. The tech was very good, and we were on our way home by 9:30 AM. I received a call from Dr. Bardell himself at noon that same day. He told me it was a lymph node, and she had many, many of them in her neck and shoulder area that were enlarged. Dr. Bardell scheduled a needle biopsy at Desert Hospital for Friday, April 4, 2008. He told me he specifically asked for Dr. Griffin to do the biopsy. He was the best, and if they called to reschedule an earlier appointment with Dr. Griffin, I was to take it. Otherwise I shouldn’t miss the one on the fourth.

We waited and did some web research to see what this could be. We already thought it was leukemia or lymphoma, but Heather’s symptoms were not matching either cancer. She had some leukemia symptoms and some lymphoma symptoms. Heather knew something was wrong. She knew her body and this was not normal. Everyone began to tell us they would pray that nothing was wrong. I begged them to pray that there was something wrong. I was watching Heather get weaker, and whatever this was, it consumed more of her every day. More lumps appeared every day, and now they were on her shoulders and going down her back. I had to have an answer and did not know what to do if the biopsy came back normal. Where would I go then? I knew in my heart of hearts that something very serious was wrong with my child. What doctor would listen to me if the biopsy came back normal? I had to find out what was wrong and how to make her all better again.

CHAPTER 2

A Biopsy and More Waiting

Friday, April 4, 2008, Heather, Bill, her two sisters, friends Myra and Shyla, and I all arrived at Desert Hospital for the biopsy. This was a huge event for our family, and we needed all the support we could get. Heather realized as well as all of us that because of the type of tissue they were removing, no numbing agent could be given because that would change the chemical makeup of the samples needed. She was terrified because of her fear of needles that this was going to hurt very badly.

Heather and I went into the procedure room. All the trays and instruments were set out ready to be used. There was a container marked leukemia on the tray, and I was not surprised. Dr. Griffin came in and explained everything to Heather and me. She was so brave and terrified at the same time. A larger needle was stuck into the large swollen lymph node under her chin and some cells were sucked out, lymph node liposuction I called it. The first cells that were extracted went into the leukemia test kit and were taken immediately from the room and straight to the lab. They were examined to make sure they had enough cells for the complete test. Dr. Griffin came back and asked if Heather could do this one or two more times. She had tears rolling down her cheeks but nodded her head and said Yes, I can do it, two more times… I can do it! I stroked her hair and held her hands as she squeezed them and said Ouch, ouch, ouch. He did the third needle stick and asked if she could do one more. Heather shook her head no; she could not do one more. I tried to remain calm and held her hands and told her how brave she was. I had watched the first one needle stick but had to turn away and focus on her eyes on the next two. We were told that the results would be in on Tuesday by noon at the latest. We were finished so the girls went to lunch, and Bill went to his last day of work at Andigilog. It just so happened that while all this was going on with Heather, the company Bill worked for went under and everyone needed to find new jobs.

We all knew something terrible was wrong with Heather, and we needed insurance. It was horrible to say that your world depends on your job for medical insurance to get the care you needed for your sick child. We needed good insurance to pay for what we figured would be outrageous medical expenses. Monday, Bill began his new job with full benefits including medical insurance. Monday was the longest day of my life as well. The phone never rang, and Heather and I had a sleepless night. Somehow, Heather already knew what the answer was. She knew what was coming.

Tuesday, April 8, 2008, I waited until about 11:30 AM, and I called Dr. Bardell’s office. They said they had not received anything. Me, not being a very patient person, decided to call Banner Desert, where the biopsy was done. I talked to the scheduling secretary and explained to her we were supposed to have results yesterday. The doctor was looking for leukemia, and we needed these test results today. She told me they could not tell me any results and I told her I understood that but could she just look to see if they were finished. Had they been faxed or were they lost somewhere? She connected me to the lab. I talked to a tech that looked at the test results and said they were running more tests but that some results were finished and could be called over to Dr. Bardell’s office. At 12:10 PM I received a call from Dr. Bardell himself again. My heart sank as I knew it was bad news. I was told that Heather had either acute lymphoblastic leukemia or lymphoblastic lymphoma. My ears were having a hard time hearing what he was saying. I was pressing the phone into my ear so