Carried: A Story of Faith, Hope, and Love

By Erin Pace

The story of Carried is based on a blog by the parents of E, a two-year-old. The story is one of her and her family, told from the point of view of E and her mother. The family blogged from Es point of view almost daily as a way to document her journey with AML (acute myeloid leukemia). Not sure if E would be a statistic or survive, the family decided to document the story from her point of view. The chapter Faith is about having faith in Gods plan. The chapter Hope is about hope that E would survive and that the family would make it through the rough rebuilding of their normal lives. The chapter Love is about what it is like to raise a child that has lived in a hospital. The story is not one of a perfect life or a perfect journey. It is perfectly messy and portrays the real life of the family.

• Language: English
• Publisher: WestBow Press
• Release date: Apr 28, 2017
• ISBN: 9781512783926

Erin Pace

E was twenty-two months old, when she was diagnosed with AML. This story takes place from twenty-two months until the end of first grade. Her Mommy, Daddy, and Mimi wrote the story. It was a way for us to let family know how E was doing. There was so much that went on during that time. Es mommy was busy as a full time doctoral student, who was pregnant and putting her husband through law school. Michael, who is Es daddy was doing his law clerkship during the day and going to school at night. Mimi still had her practice in Austin, TX, and would drive up to Dallas, TX and stay, on average, 4 days a week. There are many who helped in taking care of E. The blog, that is big part of this book, was a way to work through feelings and process the events for the day. E was quite the handful and full of life, and that made it fun to blog from her point of view. E and G are currently in school and every day is a new adventure. Erin, Elizabeths mom, works for a school district and has her doctorate in special education, while Michael is working on growing his law practice. Life is back to normal. Although life for our family will never actually return to normal, there is a new normal established. This is where Erin and Michael may panic a little when a kid runs a fever, and why they watch scrapes and bruises a little more carefully. At the time of this book, E is almost 72 months off cancer treatment. She is doing well and leads a normal life. As her parents, we try to teach E and G about doing for others and giving back, since we were fortunate enough to have many carry us through our difficult point in life. We met the Gregg County chapter of Pink Heals, a few years ago. Pink Heals of Gregg County has become an extension of our family, and they play a major role in helping us facilitate the formation of Pink Heals of Collin County. As a family, we all volunteer with Pink Heals of Collin County. Volunteering through Pink Heals, allows for Michael and me to teach the children the importance of giving back, without making it about E or her illness. We believe in giving back, so that no one ever has to go through a major life event alone. To learn more about Pink Heals visit: www.pinkhealsofcollincounty.org www.pinkfiretrucks.org

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Copyright © 2017 Erin Pace.

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WestBow Press

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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.

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ISBN: 978-1-5127-8393-3 (sc)

ISBN: 978-1-5127-8394-0 (hc)

ISBN: 978-1-5127-8392-6 (e)

Library of Congress Control Number: 2017906140

WestBow Press rev. date: 4/26/2017

Contents

Thank You(s)!

Preface

Faith

Hope

Love and Raising E

About the Authors

For Michael, E and G

I thank God, every day, that we have made it this far as a family of four. I cannot wait to see what God has in store for our lives and I cherish every day we have together.

In loving memory of Debbie Parker, Michelle Hall and Grandma Olsen.

Thank You(s)!

To our family: Thank you for helping us through this wild ride of life. Thank you for showing up, even when it was hard, to help us take care of E and G. Thank you for looking past the emotional times and stepping in, if we thought we could not do something.

To Mimi, Mille and Old man – thank you for giving up a huge part of 9 months and showing up, as scheduled, day in and day out.

To our friends: Thank you for the prayers. Thank you to those who showed up in the hard times and sat with us while our world unraveled. Thank you for listening and just being there. To MyDez, thank you for the Saturday night help. You will never know how much that time away meant to Mike and I. Angie, thank you for sitting in a dark room with me when we thought E would not make it. To Donna, thank you for doing the random things we needed help with. You always showed up in the nick of time. To Georgene and Linda, thank you for stepping in and helping as if our kids were your own.

To Creek Valley Middle School: Thank you for carrying our family. We were all coworkers until Dr. Edwards, Terri, Cheryl, Jennae and Stephanie stepped in and became the best friends a family could ask for. The day I started work at CVMS, I thought it was because you needed me. I never would have guessed that it was I who would desperately need you.

To Joe, Janet, Dr. Walker, and the special education department: Thank you for being the best place to work. Thank you for carrying our family and going out of your way to be more than my bosses and a place to work. Please know I cherish the 5 years I spent with you all and to this day think of you guys often.

Preface

The story of Carried is based on a blog by the parents of E, a two year old. The story is one of her and her family, told from the point of view of E and her mother. The family blogged from E’s point of view, almost daily as a way to document her journey with AML (Acute Myeloid Leukemia). Not sure if E would be a statistic, or survive, the family decided to document the story from her point of view. The chapter of Faith, is having faith in God’s plan. The chapter of Hope, is hope that E would survive and that the family would make it through the rough rebuilding of their normal lives. The chapter of Love, is what it is like to raise a child that has lived in a hospital. The story is not one of a perfect life or a perfect journey. It is perfectly messy and portrays real life for the family.

Faith

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For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

—Jeremiah 29:11 (NIV)

S even years ago, I put up this saying in our dining room because it matched my new curtains. Sitting there pregnant with our first, a girl, I thought how perfect our life was and how Mike and I would be the best parents ever.

It is now amusing to look back at how naïve we were and how God’s plan for us would have mirrored Mr. Toad’s Wild Ride. Upon reflection, I am in awe of how God lined up every detail for us. We just had to have faith. Growing up, I had learned about faith and that as Christians we are called to have faith and believe in something larger than any of us can imagine. I never would have imagined that having faith was blindly believing, sobbing face down on the hardwood floor of your bedroom while praying and believing with every ounce of your being that you could and would have faith in God’s plan, regardless of the outcome.

When I said God lined up everything, I mean down to the last detail. I do not believe in things being predetermined, but if I did, this experience would make a strong argument for predetermination. Mike and I had the best baby doctor (Garner); he even practiced his golf swing in the hallway of the doctor’s office with Mike. When we asked for recommendations for pediatricians, he gave us a card and said he heard this pediatrician was good and was building up a patient base quickly. Dr. McElroy was spoken of very highly by patients of Garner, so I decided to call and check into this pediatrician. I took the card and made a phone call to see what needed to be done for McElroy to become our new pediatrician and never looked back. This is so unlike me though. I have over planned every part of my life to the point that I have a backup plan for my backup plans. This was definitely the first sign of divine intervention.

Fast-forward to when E was twenty months old. We had been trying new foods and went as a family to Austin/San Antonio, so I could take a national exam. E had been fighting allergies and had allergic reaction spots that would not go away. Mike and I drove from Austin to Dallas to take E to the aftercare facility we trusted (not McElroy, her pediatrician), and I was assured by the doctor that she knew what she was talking about, and E was just having an allergic reaction.

Sunday, October 17, 2010

Today we left Mimi and Papa’s to come home after spending the weekend in Austin. I was not feeling good all weekend. I think I must have had a bad headache. Everyone kept fussing about how pale I was and how my rash made me look like a spotted puppy. I slept the entire way back to Dallas from Austin. My mommy and daddy took me to the doctor when we got back to Dallas to have them check me out. The doctor said that my rash was just an allergic reaction and wrote me a new prescription for it. Two other doctors before had said the same thing. We went home and I went to bed. (Way past my bedtime.)

That night, we all went to sleep in our perfect house, with our perfect family, expecting a new addition. We were completely unaware that the following day, our world would change forever.

Monday, October 18, 2010

This morning, I went to day care at Shell’s. Mommy called my pediatrician to see if he received the paperwork from the doctor I saw yesterday. He said that he wanted to see me that afternoon to take a look at my rash. My mommy came and picked me up early at Shell’s, and we went to see my doctor. My doctor brought in another doctor to look at my rash, and then all the doctors in the office discussed my rash. My doctor told Mommy to take me over to Children’s Medical Center at Legacy, so they could do some bloodwork on me right away and get results quickly. Mommy called my daddy to tell him, and he skipped school to come see me. Mommy’s friend MyDez came to the hospital to be with me. Mommy and Daddy were called out of the room for a long time, and the doctors told them that I had leukemia.

Not only did the doctor drop the bomb that she had leukemia, but he promptly got up and answered his phone while walking out of the room. We were stunned. I remember the social worker in the room who then said she supported families and their faiths and that she would pray with us in our religion. In our religion—as if she believed in whatever we believed. My throat started to swell, my palms felt like they were on fire, and at the same time that the lump in my throat started growing, I got this overwhelming hot and burning sensation that reached from the top of my head to the bottom of my feet—all happening simultaneously to my head exploding! It took every ounce of my being not to literally throw the woman out of the room. Many months later, I realized that this same woman walked back into E’s area, in the ER, and told MyDez that we should call the clergy because E would probably not live through the night. Obviously, when she offered to pray with us, she had never really met my God—my almighty and powerful God!

After finding this out, I got to ride over to Children’s Medical Center at Dallas in an ambulance. It was really neat because I got to lie down and watch cartoons all the way there. I even had to wear the oxygen in my nose. We got to the new room in ICU, and they asked my daddy a lot of questions while I tried to go to sleep. I moved the oxygen up on my head. It made a great hairband for the night.

Soon after all the nurses and doctors quit asking all those questions, a lot of people came in to see me: my nana, Jackie, Old Man, Mille, Aunt Amber, my aunt Ts (there are two of them), Uncle Jeremy, MyDez, Mimi, Papa, and of course, Mommy and Daddy. All were there to see me. I got to stay up real late that night!

When I say God had planned out everything, He put people in Mike’s and my lives who to this day I call our angels here on Earth. Every detail had been planned down to a T, including where Mike and I worked at the time. I was working full time, working on my PhD, putting Mike through law school, and pregnant. In other words, we didn’t have too much going on, so it was the perfect time for God to show Mike and me how strong we truly were—with Him standing right there with us.

Round 1

Tuesday, October 19, 2010

Early this morning, around 1:30 a.m., I got my first blood transfusion and my first set of platelets. The doctors watched me very closely to see how everything was going. My Mimi stayed up and watched over me too. Everyone who came into my room today had to wear masks, gowns, and gloves. My mommy went to her baby doctor to get checked out, due to all the stress she was under, to make sure my future brother/sister was okay. When Mommy was there, she found out that I was going to get a baby brother in March. My little brother and Mommy were okay, and late in the afternoon, after several blood transfusions, I got to move to my new room. I can’t tell you how much better I feel. My aunt Bekah and aunt Boo came to see me in my new room. My mommy, Mimi, and MyDez spoke with my oncologists (Dr. Winick and Dr. File) tonight, and they said I have to go tomorrow to have a bone marrow biopsy.

Wednesday, October 20, 2010

Today I had to have my bone marrow checked. I wasn’t happy that I couldn’t have anything to eat or drink when I woke up, but I got to cuddle a lot and watch a movie, so that helped. I didn’t like having to wear a mask to go to the surgery center, but Daddy carried me the whole way there.

I got sleepy really fast after I got there and had the best nap that I’d had in days. When I woke up, Mommy, Daddy, Nana, and Mimi were there, and the first things I asked for were Lambie and my bow. We got to pick a present out of the closet before we went back to my room. I picked an orange, shiny bead necklace, and I was so hungry I had a big lunch when I got back. The doctors got a bone marrow biopsy (they had to try two times), but they didn’t get everything they wanted so we have to do it again tomorrow.

I had lots of good cuddle time in the afternoon and enjoyed all my visitors that night. We think my rash is getting better.

Thursday, October 21, 2010

Once again, I couldn’t eat or drink anything in the morning and I had to wear a mask to go to the operating room. After I went to sleep, the doctors did another bone marrow test, and this time, they got everything they needed. They are very curious about my rash, so they took a biopsy of one of the spots and put in a little stitch. While I was sleeping they also did a spinal tap and did a little operation to put a funny little tube in my chest. The tube annoys me sometimes, but it is a lot better than having all those tubes and boards on my arms. Daddy carried me all the way back to my room. I didn’t worry about a prize today—I just wanted to go eat and hold you in my room.

When I got back to my room, my great Aunt Am, great Uncle Ducky and Hip Hop were all there waiting to visit with me.

Later when the doctors came to talk to Mommy and Daddy, they were very happy to report that I did not have leukemia cells in my spinal fluid. My hips and back are a little sore, but I’m ok in someone’s lap or sitting in a chair. I really want a bath, but everyone keeps saying I have to wait until later.

There is not much that I can remember from the first week. I remember crying. I remember being angry. I remember signing the paperwork with the side effects listed. I remember reading the horrible possibilities/side effects that may occur and knowing that this was the only way to save her life. I had to poison my child to the point of almost killing everything in her body, so that she had a chance at life. I should have felt more, I know I should have; the only reaction I had was to demand testing related to the cognitive, motor and speech functioning … and then I started making lesson plans for my twenty month old. It was the only thing,