“Let me tell you something you already know.”
“The world ain’t all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life.”
“But it ain’t how hard you hit; it’s about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That’s how winning is done.”
–Rocky Balboa
This quote resonated with me throughout Alex’s illness.
“It’s about how hard you can get hit and keep moving forward.”
That’s how it felt—like life delivered one crushing blow after another, and I had to figure out how to keep moving forward.
There were a lot of little blows.
Late night calls that Alex was running a fever and needed to go to the ER.
Sleepless nights spent sitting by her bedside pushing a button to deliver pain medicine every 15 minutes so she could sleep without waking up in excruciating pain.
Trying to find something she would eat.
Early morning appointments and day-long chemotherapy sessions.
Caring for her when she was sick.
Helping her move when surgery rendered her immobile.
Nights and sometimes weeks sleeping in hospital chairs or on waiting room couches.
Watching in the end as one thing after another was taken from her.
Then there were the moments that took my breath away—the ones where life hit like a sledgehammer, where I had to steady myself in order to keep the appearance of calm for Alex.
February 2015: The phone rang at 7 a.m. Alex was on the other end crying. She had excruciating pain in her left leg.
It only took seconds to figure out, “go to the university health center,” was not the right answer. So I jumped in the car, drove to College Park and took her to the emergency room. Seeing her in such pain and being helpless to do anything about it was extraordinarily difficult. But it was a veritable love tap compared to what was to come.
August 2015: Another tearful phone call from Alex. “Dr. McCoy wants me to see an oncologist immediately. He made an appointment for me this afternoon.”
Later that day, I walked into University of Maryland Medical Center for the first time, still processing the fact that Alex might have cancer.
The hospital is huge—overwhelming—several city blocks, and Alex has a bad leg. We have no idea where to find the doctor we need and the security guard sent us in the wrong direction to the furthest corner of the hospital.
We finally found where we were supposed to be. I walked with Alex into UMMC’s Greenbaum Cancer Center.
Walking into a place like that for the first time with your child who needs treatment is all kinds of terrifying. You don’t know what to expect and you would give anything for this to be happening to you rather than her.
December 2015: Sat in a conference room with Alex and her mother and watched their reactions as the doctor said, in a monotone voice as if he was telling us what time it was, “You have metastatic Ewing’s Sarcoma. The five-year survival rate is 30 percent.”
January 2016: Walked into the Pediatric Oncology Clinic at Johns Hopkins Hospital for the first time. I was there to deliver records from UMMC, so I was alone.
Looking at all of the sick children and knowing that Alex would soon look like them was devastating. Even more devastating was the thought of coming back with Alex the next day and seeing her reaction to it.
I should add that the Pediatric Oncology folks at Hopkins are awesome. Alex couldn’t have been in better hands. But that first day was just another punch in the gut.
October 2016: Last visit to the Pediatric Oncology Clinic after months of grueling treatment. Alex asked her doctor when they could remove her port (a device surgically implanted to make giving medication, fluids, blood products, etc. easier).
“We can take it out tomorrow if you want,” he said. “But I’d hate to have to put it back in three months from now.”
It was evident that he expected the cancer to return.
So much for happy endings.
Every three months following October 2016: My stomach turned into knots awaiting the results of Alex’s quarterly scans.
October 2017: A tearful call from Alex. Doctors found a spot on her lung. He said there was an 80 percent chance it was a recurrence. She was in Florida, so I couldn’t be with her. Turned out to be a false alarm.
June 2018: Alex has her 18-month appointment and all goes well. The doctor tells her that cancer that doesn’t recur in 18 months most often never recurs.
Two weeks later, she felt discomfort in her leg again.
July 2018: Recurrence of Ewing’s Sarcoma is confirmed. Survival rate is now 19 percent and it is usually fatal within 18 months.
November 2018: I rushed Alex to the emergency room at University of Florida Health Shands Hospital. She was in excruciating pain.
Nothing seemed to be helping her the first couple days and I wasn’t sure we were going to make it home. I pulled the doctor aside to ask if I needed to tell her mother to come to Florida. I opened my mouth but the words wouldn’t come out.
The doctor said she expected Alex to stabilize, and she did.
December 2018: Alex’s final appointment at UF Shands. Her doctor showed us Alex’s most recent scans. They were not what I envisioned.
Her first occurrence was a single tumor in her femur—something that could be treated and removed. These scans showed bones riddled with cancer. The only hope was chemotherapy known to be 30 percent effective on Ewing’s Sarcoma.
December 2018: The day after returning home from Florida, we were back at Hopkins. The doctors told Alex the cancer would take her life. They would do what they could to slow it down, but the cancer would eventually win.
Not what we expected.
January 2019: Alex’s doctors told her chemo had been ineffective. A scan that morning showed her liver was more tumor than healthy tissue. Any further treatment would cause it to shut down faster than doing nothing. All they can do now is make her comfortable. She has just a couple weeks left.
February 4, 2019: Alex’s decline was rapid from the time she returned to Maryland. Every day, it seemed, something was taken from her and the only joy she had left was visits from her family and friends, who were awesome in the end.
The doctors told me what liver failure would look like, and she was showing signs that the end was near. She struggled through her morning routine and prepared for a visit from her college roommates.
When they arrived, I excused myself to get some lunch. Minutes later, I was called back to the room.
Her friends left.
Alex started to cry and said, “Something’s wrong.”
I called for the doctor.
She grabbed my hand and said, “I love you.”
The doctor gave her some medicine and she drifted off to sleep.
February 6, 2019: I was awakened around midnight by a nurse saying, “Mr. Lebovic, it’s time.”
I rushed to Alex’s bedside where her mother was already lying next to her. I held her hand, and a couple minutes later, the doctor said, “She’s gone.”
I could add more about making funeral and burial arrangements, but you get the picture.
Nobody hits harder than life.
But you keep moving forward.
That’s how surviving is done.
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.
You were amazing through all of it. It didn’t matter what the situation was, you did exactly what you wrote, marched through finding the answers, making things happen, and supporting Alex no matter when, where or how. You would say that’s what parents do. I would say your determination, your actions and your strength were inspiring. Should I ever face such a heartbreaking situation, I’d definitely be thinking “what did Mitch do.”
Wow. Really hits hard. Glad I was able to help (even alittle) provide food for you and have some free time w your friends in the waiting room. It did not matter what the menu or shhhh, good drinks we brought you it was ALL about support- this is what true friends do.
Just Be there!!!