A Purpose Fulfilled: My Sister's Battle With Aplastic Anemia

A Poem and a Grief Hidden for Twenty-Five Years

Waves crashing against the shore,
remind me of my time with her.
Together, forever. I will always love you.

These are the words that I wrote after she passed away and have kept hidden for almost twenty-five years. They speak what I felt for the sister that I loved so much and who died at such a young age.

I imagine what my life would have been like growing up with her — how close we would be, getting married and having children, spending weekends together just laughing and giggling and enjoying our lives together. I try to tell people that she didn't die in vain, but that doesn't make the hurt dissipate as time passes.

Mother's Day: The Day Everything Changed

The spring of my eighth-grade year, my life drastically changed. It was Mother's Day, warm and sunny with just a touch of a breeze in the air. Azaleas were blooming outside the front door and you could smell their fragrant blossoms through the open windows.

My mom, dad, and I had just arrived home from church and were getting ready to head back out the door for brunch with my nana. The youngest in our family, my sister Ella, had stayed home from church — lucky her — because she wasn't feeling well. She was only ten years old and I thought it was terribly unfair that she was allowed to stay home at such a young age.

When I went into her room to see her (I admit it — I thought she was faking), she was lying in bed, thumb in her mouth, blankie pulled up around her. When she looked at me, her normally bright blue eyes were a dull slate blue and her face was an unhealthy shade of gray.

"How are you feeling?" I asked.

"Tired," said Ella.

"Well, we are getting ready to go to brunch. Are you coming?"

Just then my mom came into Ella's room. "Ella isn't going with us. She isn't feeling very well." I said goodbye to my sister. I could see the worry on my parents' faces as we walked out into the sunlight to get into my father's BMW, but dismissed it as normal parental concern. We were silent on the short trip to my nana's house, and then let her fill the car with her chattering about what her week had been like.

Brunch was wonderful and, even though there was an empty spot where my sister would have been, our small gathering was able to have a good time and catch up with each other. I didn't always get to see my nana and loved spending time with her whenever possible.

Later that evening I could hear my parents whispering, thinking I couldn't hear them.

"I will call the doctor first thing tomorrow," said my mom. "Every time Ella runs or exerts herself the least little bit, she almost passes out. Something is just not right."

"Call me at the office when you are done," said my dad. "They will know where to find me."

The next morning I went to school as usual. I was in eighth grade and about to start high school in the fall. I had made the freshman cheerleading squad with my friends Kati, Jess, and Audrey, and we were planning a fun-filled end of the year and summer. We were the top of the social ladder at school and were going to enjoy every last minute of it.

"Hey, Casey!" said a seventh grader I knew, grabbing my arm. "I was just in the nurse's office and I heard them talking about Ella. The nurse said that she has anemia. What is that?"

My vision started to blur and I leaned up against one of the lockers in the bright yellow hallway. What did this mean? Should I go to the nurse's office? My friends gathered around me and reassured me that everything would be okay.

The wait for the end of the day seemed to last forever. I walked out to the bus and chose a seat by myself, putting on my headphones and burying my nose in a book so nobody would bother me.

When I walked into the house, it was humming with commotion. Ella was being admitted to the hospital immediately for more tests. I was going to need to have blood drawn as well, but my mom couldn't — or wouldn't — give me an explanation. My head was spinning as I tried to keep up with everything going on around me.

When my mom, Ella, and I arrived at the hospital, orderlies greeted us and rushed Ella off in a wheelchair, briskly wheeling her down the long, narrow hallways. Just then my dad rushed in, completely out of breath.

Diagnosis and the Road to Johns Hopkins

"What is going on? What did the doctor say?"

"She has Aplastic Anemia," said my mom resignedly, still not elaborating.

To me, this didn't sound too bad. Anemia, right? Low iron? Give her some blood and she would be as good as new. Maybe that was why I was there — to give my little sister blood. That would be pretty cool. I would get to be the hero.

After my parents filled out all of the required paperwork, we went into another room to have blood drawn from each of us. The room was pristine white with hard chairs and no decorations. The nurse lined up several vials, pulled on some blue rubber gloves, and proceeded to take blood from each of us. When she was done, she told us to go to the front nurse's station, where they would be able to tell us where to find Ella.

We walked silently down the hallway. I walked several paces behind my parents, trying to look cool and unassociated with them. There were cute doctors around, after all.

Entering Ella's room, the first thing I noticed was the IV hanging from a tall silver pole and blood dripping through a tube into my sister's arm. My parents made me sit on the bed next to Ella.

"We need to talk to both of you," said my dad.

He continued: "Ella has Aplastic Anemia. This means that her body isn't making enough white blood cells. Right now they don't think that they can help us here at this hospital, so we will need to take her to a larger hospital like Johns Hopkins in Baltimore, which is about ninety minutes from here. Casey, I will be staying with Ella in Baltimore and you will stay home to finish out the school year. Your dad will be able to take you to any activities you have and then the two of you will come down on weekends."

This was far more serious than I had ever thought. Just then the doctor came into the room. As he walked over to Ella's bed, you could see him smiling under his mask, his eyes twinkling.

"How are you feeling today, young lady?"

"Sleepy. I just want to go back to bed," said Ella.

"Well, that is to be expected. Your cells aren't doing what they are supposed to do, so until we get them back to where they should be, you won't have a lot of energy or feel like doing the things you would normally want to do. Also, once we begin treatment, you may not feel like doing normal things for quite a while — but we will work on getting your energy level up."

The doctor turned to my parents and me, pulling up a chair to sit and face us. He had a grave look on his face.

"Ella is a very sick little girl. We are looking at several options right now, but ultimately it looks like she will need a bone marrow transplant. Casey, this is why we took blood from both your parents and you — we need to see if any of you are a viable match. If none of you are, we are going to have to look at some different options."

I glanced over at Ella. She had fallen asleep, thumb in her mouth and blankie wrapped around her, not hearing a single word the doctor had said. The doctor stood up to leave, continuing to talk to my parents as they walked out the door. I sat there staring at my sister, still unable to process what was going through my mind.

After kissing my sister goodbye, my parents took me out to dinner and we walked around the Inner Harbor, taking in the nice weather and the sights. People were milling around, coming in and out of restaurants and pointing to things they saw out on the water. I have to give it to my parents — they really were trying their best to keep all of our minds off of what was happening to our family.

We finished dinner and then headed to the hotel where we would be spending the night. My dad said that we wouldn't be able to afford every night at a hotel, so my mom would be staying at the local Ronald McDonald House.

As I snuggled down in my hotel room bed, I tried to think of my life at home, my friends, and what we would be doing right now — texting, gossiping about boys, and trying to get some homework done in between. I fell asleep right away, exhausted from the day.

The next morning my parents and I woke up, showered, and grabbed some breakfast downstairs. As I made my way to the omelet station, the smell of all the food being served made my stomach rumble. Standing in line, I glanced slowly around the room, taking in the people and the activity going on around me. My eyes rested on a little girl with a hot pink bandana wrapped artfully around her head. I could tell she was wearing it because she didn't have any hair. A chill ran through my body. "Is this what Ella is going to have to go through?" I thought. I turned away quickly, shaking my head to clear the image from my mind.