I was sitting on the curb at the end of my grandma and grandpa’s driveway. Shoulders stooped, my head resting in my hands, wondering how I ended up here. My heart was heavy and my thoughts were anxiety-filled as I tried to imagine what the upcoming first day of school may look like. Will I have any friends? What if nobody likes me? Will I be able to get around OK? What about the bus? Will I sit by myself?
I missed our home. I missed my bed.
I missed my dad.
I was really close to Grandma and Grandpa, and they were taking great care of us while our house was being built across the pond, but I wanted to go home.
No matter how much I wanted that, or how badly I wished it would happen, I knew in my tender, young heart that this was our new reality.
Our house had already sold. My mom and dad weren’t together anymore. My dad had a girlfriend and was starting a new life. I would never live in my old neighborhood. And I would never be going back to my old school.
In that moment of sadness and melancholy, something happened. It wasn’t a huge something, but it was all my lonely, getting-ready-to-go-into-fourth-grade-self needed to feel slightly better about the world that I now understood could crumble at any given second.
I heard a noise and looked up to see two girls speeding down the road on one bicycle—one was driving, the other was perched precariously on the front, legs dangling over the edge, as her body rested on the handlebars. The driver had the most beautiful curls I had ever seen atop her head and a smile that was warm, inviting, sincere and well, perfect.
She was not shy. She stopped and smiled and began talking to me like we had known each other for years. I found out her name was Emily. Was I making a friend? I discovered her parents lived just down the road from my grandparents.
I believe I just made a friend.
I was lonely and scared about being the new girl at school in the fall. In that moment, meeting Emily made everything feel better. Where there was once despair, I now found promise. And hope.
We became fast friends and that friendship stood the test of time. We stayed close through the ups and downs of life and the myriad of changes that come with being preteens and teenagers, young adults, wives, and parents. We both married and were in each other’s weddings, shedding tears and beaming bright smiles. We went from being carefree teenagers to mature adults. Whether we lived in the same state or miles apart, our friendship blossomed and grew through life’s ever-changing seasons. We talked on the phone regularly, wrote each other letters (yes, actual pen-to-paper, put them in the mailbox letters), and eventually, emails.
Loyal, kind, generous, thoughtful, considerate, steadfast—she was the stuff lifelong friends are made of and she was one of my very, very best friends.
And then, something happened. Emily became very sick.
It began with flu-like symptoms that wouldn’t go away. I remember talking with her and thinking this flu she had didn’t seem normal. She was pregnant with her third and was so sick that it became difficult for her to get up from the couch. Her mom was in town and, with nudging from her mom and husband, it was decided she should go to the hospital. Once Emily arrived, she learned her body was beginning to shut down. Whatever this was, it was most definitely not the flu. Emily’s condition worsened as the doctors struggled to find answers. Finally, the doctor Emily referred to as “her angel” pinpointed that she had a rare systemic auto-inflammatory disease called Still’s Disease.
Emily was treated and sent home. She believed she would be better. Her family believed she would be better. I believed she would be better. We all believed she would be better. This would be the end of her struggles and sickness. Sure she might need medication, but ultimately, she would be OK.
The next years proved those thoughts to be wrong.
Emily began taking a medication called Enbrel that her body did not respond well to. The result was that her bone marrow stopped working. Bone marrow produces 200 billion new red blood cells every day, along with white blood cells and platelets. Without her bone marrow functioning, Emily constantly battled fatigue and was regularly in need of blood transfusions. I remember her telling me the best thing I could do to help was to give blood. Emily ultimately developed Myelodysplastic Syndrome (Preleukemia).
Here are Emily’s words in a letter she sent out to friends and family:
I have news that I had hoped would never come. I thought we had licked this and I was living my new “normal” life accepting the card that I was dealt. For our spring break this year we went to Indy for a visit with friends, to the Children’s Museum and a doctors appointment. It had been two years since my last bone marrow biopsy and Dr. Nelson wanted to have another look. It was agonizing pain, as I am sure you can imagine, but I am blessed that we did.
After waiting several sleepless nights, I had a nasty feeling in my gut; Dr. Bob as he calls himself, called with the results: Bone Marrow Failure! It was quite a lengthy and numbing conversation, with lots of big words and unfamiliar terms. To give some understanding this is how I will explain it in my own words, my nuclei (DNA) is bigger than it is supposed to be. Starting from the very beginning of its life in the stem cell it appears as being abnormal, LIKE in leukemia, but it IS NOT CANCER. I had been diagnosed with Aplastic Anemia (because of the cellularity in my marrow was very low) and the Still’s Disease (auto immune inflammation and stuff), but now because of the slight changes it has turned into MDS, myelodysplastic disease, AKA bone marrow failure.
My only hope is a bone marrow transplant. Dr. Nelson said within the next 6 months! Oh my! What the heck—I feel fine, I look fine. I had adjusted to my new “normal” life and thrown everything else in the closet and shut the door. I don’t regret having that attitude because it got me through a lot, but well, the door was reopened and everything fell on top of me (and the boys).
Emily would be having a bone marrow transplant.
The date was set: August 12.
As I mentioned before, Emily had an unforgettable head of beautiful thick curls and was often told how much she looked like Julia Roberts or Sandra Bullock. Because she would be needing chemo prior to the transplant, she decided she wanted to cut her hair so that her boys would not have to go through the shock of seeing it slowly fall out.
I was living in Indy at the time, and she was in a small town right outside of Fort Wayne. She asked if I may be able to come and spend the day with her. I did not hesitate in my reply. Absolutely. 100%. Of course. I will be there for you. Whatever you need. I will wipe your eyes. Hold your hand. We can keep it light if you want. Or we can go there. Whatever you need.
That day is forever etched in my mind. As I watched the beautician cut her hair, and saw the beautiful curls fall to the ground, she began to tell me about the letters she had written her boys in case the transplant didn’t go well. And my heart broke. But I had hope. We both had hope. This transplant would be the beginning of the end of her struggle with her bone marrow. This transplant would be the return to a normal life.
After the haircut, we went to lunch and talked and laughed and shed some tears. As we were walking through the parking lot preparing to say our goodbyes, she turned to me, looked into my eyes and asked if I thought this was the right decision.
“Of course. Of course this is the right decision. This will make you better.”
She was nervous. “I know. You’re right. But, what if it doesn’t?”
No, we decided. We were sticking with hope. The idea of this not making her better was not an option.
She was going through with it.
I will spare the details, but around a week after the transplant, it became evident that something was not right. She did not seem to be getting better. On the contrary, she now seemed sicker than ever before. It began with her bowels. And then her liver. And eventually her skin. Emily had developed graft-versus-host disease.
For the next months, Emily lived in Indianapolis while her husband and boys would travel to see her. It was heartbreaking to see her suffering. The graft-versus-host had taken over. She battled constant fevers and fatigue. She struggled to walk and one time, when visiting, even took a tumble down our front step because she was too weak to lift her legs. She was covered from head to toe in an itchy rash. Her eyes and skin were yellow with jaundice. But through it all, she remained very much Emily. She found reasons to laugh. She delighted in her family. She stayed occupied. She relished in the gift of her children. She rejoiced in her love for Jesus and His love for her. She found joy.
She eventually returned home, and although she wasn’t showing signs of real improvement, there was hope she would get better.
We talked regularly and she spoke of the boys’ games, organizing her closets, having garage sales and what was for dinner. Although she was still sick, it appeared her life was returning to some level of a new normal.
On May 15, 2009, I received a call from Stan that he and Emily had arrived in Indy that morning—and she was unresponsive. I was shocked. We had just talked a couple of days ago. He did not think she had long. I hung up the phone and rushed out the door.
There are no words to describe what I felt when I walked into her hospital room. There was my sweet Emily lying in the hospital bed, tubes everywhere, machines pumping. I had seen her in hospital rooms many, many times before—but never like this.
I never wanted to see this.
Her parents and family were gathered around her. Although she could not respond, I like to think she heard all of us. I held her hand and told her I loved her, as I had many times before. I spent time in the room with her, and in the waiting room with her family. With her boys. And my heart felt like it would break into a million pieces.
After a few hours had passed, I decided it was time to go home. When I called Stan the next morning to tell him I was on my way to the hospital, and to see if he would like a cup of coffee, he broke the news to me that she had passed away early that morning.
I fell to the ground and sobbed.
On May 16, 2009, Emily went home to be with Jesus.
On May 16, 2009, I lost one of the best friends I have ever had the privilege of having.
Until we meet again my dear sweet friend, until we meet again . . .
It has been nearly a decade since Emily has passed, and I can think of no better way to honor her life than to help another family who may be going through what the Koehls went through. This is a gift of hope. I pray a cure will be found and that lives will be saved with the help of The Leukemia & Lymphoma Society.
Here is the closing prayer and some of her favorite scriptures from Emily’s letter letting her loved ones know about her bone marrow failure:
“Dear Heavenly Father, please help our family stay strong in hope and in faith on the road we must travel. Place the Spirit with all of us through the days that lie ahead to maintain our faith in You and that You are the Almighty that knows what we need, Lord I ask that the strength You give us will carry us on. Amen.”
(Just a few of my favorite scriptures)
“All things are done according to God’s plan and decision; and God chose us to be his own people in union with Christ because of his own purpose, based on what he had decided from the very beginning” (Ephesians 1 1:11)
“I have the strength to face all conditions by the power that Christ gives me. Philippians 4:13”
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