My Journal for Jeremy: Six Months to Say Goodbye

By Valerie Bower

I am Val Bowera daughter, wife, mother, sister, grandmother, and friend. I gave birth to three beautiful children and later adopted two more; I also have four stepchildren. I have spent the majority of my adult life working with people who need some kind of help.

Usually a little bit of stress is a good motivator for me. But when you hear the word cancer and the doctor is talking about your child, your mind does not know what to do. When the next doctor tells you he has two weeksor maybe a monthto live, you pray.

Someone once told me that I didnt have enough faith. I was taught to pray, Gods will be done. I said that prayer for months and then added, God give me strength to face the future. I kept a journal of the days and weeks of struggles and hardships, based on this moms feelings. I have no intention of causing pain or anger to anyone; it is all based on my opinion.

My wish is that after reading this, parents will hold their babies more often. Sisters and brothers will say I love you and mean it. I wish for families to realize that tomorrow may not come. Every day should have a memory to hang on to.

• Language: English
• Publisher: WestBow Press
• Release date: Jun 13, 2014
• ISBN: 9781490838281

Valerie Bower

N/A

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Copyright © 2014 Valerie Bower.

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ISBN: 978-1-4908-3827-4 (sc)

ISBN: 978-1-4908-3828-1 (e)

Library of Congress Control Number: 2014909403

WestBow Press rev. date: 05/19/2014

Contents

Prologue

A Perfect Child

Dedication

Chapter 1 The Diagnosis

Chapter 2 Months to say Good Bye

Chapter 3 Saying Goodbye, End of life care

Chapter 4 Making Changes

Chapter 5 Our new normal

About the Author

Prologue

O ur journey started back in September of 1985, because that is when your heart started to beat. Of course I did not know about you until a few weeks later. But I fell in love with you, and the piece of my heart started to grow from that day forward. I remember the first doctor appointment and being told that I was pregnant. I was so excited; I couldn’t wait to tell your dad. My next appointment didn’t go as well as the first. By November I was bleeding and having some cramping pains. Doctor couldn’t hear a heartbeat, and scheduled for me to come back in December. Sooner if I needed. I had a very difficult month from Thanksgiving till December of not feeling well, and thinking I was going to lose this little baby I was already in love with. At the next appointment the doctor still couldn’t hear a heartbeat and talked about scheduling a DNC. I had been through this once before and I didn’t want to do it again. To me it was almost Christmas, and I didn’t want to remember Christmas as losing my baby .

While I was pregnant I wrote this poem for my cousin who lost her little baby, I never thought then that I too would lose my little baby.

A Perfect Child

J ust that little kick inside of you that said Hey mom I’m here, I’m living and breathing, and wondering, will you always hold me near? "I may not be as perfect as you really did expect, But God has put me here you see to give him more respect. For when you see another child, you’re sure to understand that I was made more precious, than any child at hand. For I will be made perfect in a twinkling of an eye, sit in heavens glory and wait for you on high. Then I will run to greet you, so you can hold me near, and tell me how you love me, by whispering in my ear.

The ladies from my church were having a Christmas party, and I was invited. I remember the ladies asked if anyone had a prayer request and I raised my hand. I told them how I had been sick, how the doctor had not been able to hear a heartbeat, and how I was so worried that I was going to lose this little baby. All the women gathered around me, put their hands on me and prayed. I remember how comfortable and warm it felt as they prayed for me and you. Christmas Day, my bleeding stopped. I went back to the doctor and he could hear your heartbeat. You will never know how happy I was at that moment. I was going to have a baby!

I try to think of the things that I want to share about your life and growing up. There are so many wonderful stories, and memories. But I will save them for me. I want to share the last six months of your life, the struggles we went through, the love shared, and the final good bye. This is the piece of my heart I hope will change the lives of people who read this. I want mom’s to hold their babies, sisters and brothers to say I love you, and families to realize that tomorrow may not come. Every day should have a memory to hang on to.

Dedication

Jeremywithhissisters1989.jpg

Jeremy with his sisters 1989

Jeremysenior2005.tif

Jeremy senior 2005

Jeremy Tim Baumann

June 10, 1986- December 7, 2011

Chapter 1

The Diagnosis

May, 2011

Y ou went to see a new doctor because of stomach pains. You had been seeing a doctor who had been unable to find anything wrong with you. This was the story you always seem to get, so as a mom I was starting to think you just imagined having pains. You went to the appointment with Seneca, your girlfriend. I remember the day well. I was at work and had finished up with my last client for the day. You called my cell phone and told me, Mom, I need you to come to the hospital. I asked why. You told me, things don’t look so good, and the doctor isn’t letting me go home. I remember stopping at my office to talk to a friend. She listened to me and then said Val, this is Jeremy we are talking about. Don’t make a mountain out of a mole hill.

I had a 45 mile drive to get to the hospital. In my mind I tried to think of what could be wrong with a stomach ache. Then I thought gall stones, everyone in the family gets them. Things will be fine. I tried to remember through the years how many times you have been in the hospital. The only time I could think of was when you were 3 and had tubes put in your ears. You have never even had a broken bone, so this has to be serious.

I was told you have a large blood clot taking control of your body. The doctor stated it goes from your heart to below your stomach, into your heart, liver, and lungs. They then identified three masses on your liver ranging from 3 cm to 10 cm. This could possibly be cancer. A biopsy is scheduled for Tuesday, but first the doctors are going to try to see if they can dissolve the blood clot. This was the first week, when you started Coumadin to help with the blood clot.

The day after we found out you had cancer, I was driving home when I got a phone call from my mom. She called to tell me that my dad was being air lifted to Fargo. They thought he had a stroke. I remember thinking, do I turn around and go see my dad, or should I stay here for my son? I stayed home for you. My dad was released the next day from the hospital.

The Coumadin was stopped prior to the biopsy because of the clotting issues. You rode in the ambulance to the other hospital for the biopsy. We all drove there to meet you. You talked about the biopsy as being painful and that it hurt. Afterwards, you were sent back to the first hospital to readdress your medications.

The hospital stay alone seemed to drive us all crazy. You kept saying you didn’t feel sick and just wanted to go home. Seneca stayed with you at the hospital. Her parents were so helpful by taking Bella, your daughter, home with them. Dad and I made trips back to the hospital every day. By this time, the word cancer has become something that I hear, but not sure I understand. We know you have cancer, but the rest is a mystery. They found out from the biopsy that you do have cancer and we were told it was fibrolamellar hepatocellular carcinoma. Yeah, like we knew what that meant. The doctor told us that your type of cancer makes the cell look like another cell is inside of it. Thanks to computers we could look up information. We discovered that it is a rare form of liver cancer that usually occurs in young adults who have no history of liver disease. Each year, approximately 200 people are diagnosed with this cancer worldwide. Patients typically present with a palpable abdominal mass but no symptoms, although pain, weight loss and jaundice may occur. I didn’t like what I found. I thought to myself, how a kid who had never been sick could get something so rare. I remember talking to my friend Linda and telling her what the doctor had said. Right away she started to look up whatever information she could find. She called me crying because she read that most people only live 5 years. I thought you had longer so we were going to the Mayo Clinic and they would find answers. At this point I had hope that things were going to change. Unbeknownst to me, the doctors found the cancer too late.

I found a note I had sent to one of my friends. It reads: It’s hard to work and think about the things that need to be taken care of, but I think work helps remind me that life is still normal for everyone else. Jeremy has his appointment today with a county financial worker about insurance. Then I think he is going to try to go to St. Cloud to spend time with Bella before going to Mayo Clinic this weekend. He had blood work done yesterday, and some of the results were not what was expected. I think it was with the blood thinner. It is not doing the job they expected. Then he got home and ended up back at the ER. He had been throwing up all day, and could not even keep water down. So they gave