Rob Lenfesty - A Dad's Story

 

Monday, November 14th 2011 was a day like any other day. I went to work at the hospital and when I returned home, my three kids Nick, Scott and Kyra were in the living room. Nick was a 5-year old Kindergartener with a sweet disposition; Scott was a mischievous, energetic 3-year old, and Kyra, our daughter, was just 4 months old.  The boys were playing together and my wife, Nancy, was tending to Kyra, just like every other day. Scott had his well child check-up earlier that day and everything went seemingly well.

I played with the kids for a while and during dinner, we discussed our plans for later that week.  There was a magic show at school and a church program both on the same day, and we couldn’t decide which we wanted to go to — that was the biggest problem we were facing at the time.

After dinner, I was working on some projects in the the attic when I heard footsteps and thought one of the boys was coming up to see what I was doing.  Instead, it was my wife who frantically yelled, “Dr. Pickens is on the phone and he thinks Scott has leukemia!”

To provide some context, Scott had eaten some vinyl grapes that we received as play food to go along with a toy kitchen. We were concerned he may have ingested lead from the grapes and asked Scott’s pediatrician to order a lead level and a CBC.

I immediately dismissed Nancy’s report and thought she was just overreacting. Scott couldn’t have leukemia; he probably just had a virus that made his CBC look abnormal and this would all pass in a few days.  Plus, Scott was energetic and happy…he had always been healthy, never had an ear infection, and never even went to the doctor except for his normal check-ups.  I was sure that I’d receive a reasonable explanation from the pediatrician that did not include my healthy son having leukemia.

Dr. Pickens explained that Scott was anemic and that his platelets were low. Although his white count was normal, 18% of his white cells were blasts (leukemia cells). All of his cell lines were affected. I couldn’t write this one off.  Our pediatrician was fantastic and immediately put us in touch with the chief of pediatric oncology at our local hospital. The oncologist was convinced there was a problem that warranted further investigation. He said there was nothing more to do that night and he wanted us to come to the hospital the next morning.

That night was one of the worst of our lives.  We were filled with anxiety, fear and sadness. Once I knew there was a real problem, I wanted to do something about it. It angered me to think these vile cells were floating around in my son’s body.  Scott slept peacefully while the hours dragged past. Eventually morning came and we took Scott to the hospital where we received confirmation that Scott did indeed have leukemia.

He was admitted to the hospital that morning and it was reassuring as we began putting the plan into action and go through the laundry list of tests to run and medications he would have to take.  The next day, he had surgery to have his port placed and he started chemo and steroids. All of this made me feel better because we had a major problem, and a plan to address it. My focus shifted from nebulous fear to a laser focus on accomplishing the next task and then the next one.

The flurry of activity slowed around the 3rd day of his hospitalization. Scott and I spent hours lying in his hospital bed watching TV, talking, and playing games.  The anxiety began to creep back in. Quiet times were the worst. My mind raced with questions. What did this mean for Scott, for our family?  Would we still have Scott in a year, or even a month? There was no escape.  I was a doctor and I dealt with sick babies every day.  At work, I was in control and we almost always were able to save the babies. Every now and then we would have a baby that we couldn’t save and we would grieve at work, but I could come home and get away from it, hug my children and be grateful they were healthy.

Now I was trapped. Our lives were on a trajectory that I had no control over and I could not escape.  It felt suffocating.  Scott and I hadn’t left the hospital room for 3 days so I asked the nurses if I could take him to a butterfly garden in the hospital. I went there looking for peace and a break from the stress of the hospital room. Once we were there, the full weight of everything that was happening hit me. I had been so focused on accomplishing the next task that I hadn’t stopped to think about what the future might actually look like.

Facing a future without Scott was terrifying, I hugged him tightly and began to cry.  Just the two of us.  Scott put his head on my shoulder at first, but after a minute or two he pulled back and looked at me.  Rarely have I ever cried and I don’t know if he was confused by my crying, or angry from the steroids, but he punched me in the eye with his chubby little balled up fist.  The weirdness of the whole situation made me laugh.  With his one little punch, I felt like Scott was telling me, “Look, we’ve got stuff to do over the next few years and I can’t have you falling apart on me.  Suck it up, get back on your feet and let’s get it done.”  I never cried again after that.

We moved through the subsequent phases of chemotherapy without too many interruptions.  Every phase brought a new set of side effects in Scott as well as new fears. I coped by focusing on the next task, and the one after that. Strangely, life became simple for me during that time. People tend to focus on the urgent tasks in life and neglect the less urgent but still important ones. Prior to Scott’s diagnosis, I too was guilty of this, but the cancer diagnosis brought about a huge shift in our priorities. It made the important things of life, urgent. Things like family experiences and telling people you love them were now urgent tasks.  All the other unimportant distractions of life fell away.

Scott completed three and a half years of treatment and recently marked his one-year anniversary of being off-treatment.  The normal busyness of life has returned, but I am thankful for every trip, every birthday and every holiday. I hope we never lose the priorities and perspective we gained from this experience. This Father’s Day, I am grateful for the best gift I could ever ask for – the ability to come home from work and still hug all three of my kids.

Rob Lenfesty – Father’s Day, 2016