There is nothing funny about cancer, but there was one moment during Alex’s treatment that made me laugh.
When Alex was in the hospital, either her mother or I was always with her. I was usually on the night shift.
One night in May 2016, I photographed a baseball game in Frederick, MD. Afterward, I was on the way to the hospital at about 9 p.m. when I got a text from Alex.
“Almost here?”
I told her I was a few minutes away.
“Hurry.”
Alex had just undergone major surgery. Doctors removed most of her femur and replaced it with a titanium implant. She was not fully mobile yet, so I was concerned something was wrong.
I told Alex not to wait for me if there was a problem. Call a nurse.
“Just hurry,” she replied.
So I got to the hospital as fast as I could. I parked the car and ran to her room. The parking garage was at least half a mile from Alex’s room and I was not in the greatest shape of my life.
I walked into her room out of breath and Alex was just lying in bed calmly staring at the ceiling.
“Hi,” she said, in a voice that made me instantly recognize she had been making good use of her button for pain medicine.
“What’s the matter?” I asked.
“There’s a bug in here and I can’t go to sleep because if it flies up my nose there’s no hair in there to stop it.”
I paused. She was serious.
So I hunted that sucker down and killed it.
She made me show it to her before she went to sleep.
Learning to Walk
Last week, I went to the zoo with my oldest granddaughter. She is 19 months old and is not always steady on her feet—especially when she is in a hurry.
Watching her stumble and fall in her excitement transported me immediately back to the days when Alex was learning to walk. That was hard for me. Alex was always in a hurry. She could have saved herself so many bumps and bruises if she just slowed down or held our hands for a little longer.
Alex’s cancer manifested primarily as a tumor in her left femur. Treatment involved chemo to shrink the tumor, surgery to replace her femur, and more chemo to remove any remaining traces of cancer. It lasted for nine months and it was grueling.
After the surgery, she had to learn to walk all over again. The Hopkins staff had her out of bed the next day walking the hallways. The day after that, they had her climbing stairs. A week later, she left the hospital on crutches. She did remarkably well.
A few days after she came home, she attended a friend’s 21st birthday party at a local pub. She asked me to drive her.
When we arrived at the pub, she told me she would be leaving her crutches in the car.
I was not thrilled about that idea. A fall could be catastrophic.
But she was insistent.
As I watched her limp toward the building, I felt like I was watching my toddler all over again.
“Just slow down and hold our hands a little longer.”
I thought about finding one of Alex’s friends and giving her the crutches just in case. But Alex would have been furious. So I swallowed hard and headed home.
Cold Turkey
One day near the end of her life, Alex had an appointment for radiation treatment. It wasn’t going to save her. The doctors were just trying to slow the cancer down to give her more time.
When she left Gainesville, Alex’s scans showed bones riddled with cancer. It was no longer just a mass in her femur. I can’t imagine how much pain she was in. Her doctors made sure she had ample pain medication.
The radiation seemed to have side effects. Alex was very nauseous and couldn’t keep down what little she ate.
I helped Alex get into a wheelchair and walked her to her radiation appointment. The Johns Hopkins campus includes several buildings over multiple city blocks. It was not a short walk.
On our way back, Alex began to vomit uncontrollably. We were prepared for this. I pushed her out of the way and tended to her as best I could.
I looked up for help. We were in a main corridor of the hospital. Medical personnel walked by, engaged in conversation or with their heads buried in books or screens. No one stopped to help. No one even looked at me.
That’s how childhood cancer feels to a parent. All you want to do is help your child and, oftentimes, you just can’t. You’re on your own.
When we got back to the room, I told Alex’s doctors what happened. They dug deeper into the cause.
Alex was certain it was the radiation. The doctors said that didn’t make sense. They thought it might be her pain medication. They might be giving her too much.
The answer was exactly the opposite. Without telling her doctors, or her parents, Alex stopped taking her pain medication. She didn’t like the side effects. She was experiencing withdrawal symptoms.
The doctors put her back on a lower dose of the pain medication and the nausea subsided.
The Good Fight
The day before Alex died, her college roommates were coming to visit. She wanted to get ready for them.
She asked me to help her sit on the edge of the bed. It was a struggle. The mere effort to sit up left her exhausted.
“I am fighting as hard as I can, but this is so hard,” she said almost apologetically.
“I know you are,” I said. I did not want her to think she was disappointing me.
When she was ready, I lifted her out of bed and carried her to the bathroom. A week earlier, she never would have allowed that. Now she had no choice.
She was able to get ready for her friends and called me to help her back into bed.
Alex battled as hard as she could right up until the end. She battled to reclaim her independence. She battled to reclaim her body.
As her father, I fought beside her every step of the way.
And even though her part of the battle is over, mine continues. One mile at a time. One dollar at a time.
Until our scholarship is funded.
Until cancer is cured.
Mitch and Dakota are participating in the Million Mile this month in Alex’s memory. They are raising funds for childhood cancer research so Alex’s story doesn’t have to be someone else’s story.
You can donate here.
All donations are matched by Alex’s Lemonade Stand Foundation