Lou, and Other Stories

Childhood illnesses teach us things we never imagined having to learn

Louis and his mom. October, 2024

Louis was a wonderful baby: cheerful, good-natured, affectionate, quick to learn, and amazingly strong and active. As he grew over the next two and a half years, we joked about how he never really stopped moving, and how his body looked like that of a tiny circus strongman. As his grandfather, I was very proud of him, my daughter, Emily, and her husband, Garrett, and looked forward to every moment we could spend together. It’s about 500 miles to their home in Chicago from our place in Merriam, Kansas.

Of course, my attachment to Louis (they use the French pronunciation, “Loowee”) was not diminished by the fact that he’s named after me (his middle name is Jeffrey), and because he looks very much like photos of me taken at his age. He took to my wife and me right away, which felt like I’d never love anything or anyone this way again. It also didn’t hurt that he displayed an early gift for antic comedy.

In the summer of 2023, at age two and a half, Lou started having trouble walking, and within a few weeks, couldn’t stand anymore. My daughter called to tell us they were at Lurie Children’s Hospital, where doctors had let Emily know her son might have cancer. We told her we’d be there tomorrow, cancelled everything else, and hurriedly packed our bags in case of the need for a longer-than-usual stay.

Upon our arrival at the hospital the next day, two doctors gave us the diagnosis from the biopsy: b-cell acute lymphoblastic leukemia. “There are many types of leukemia,” they informed us, “but this one is the most common form of childhood cancer, we see it fairly often, and our intention is to cure it.” At the word, “cure,” we wept with relief and took turns hugging the doctors and each other. Suddenly, our hopes were brighter. We learned that the treatment would take 3 years and the first month would be the toughest. Thousands of cases of trial-and-error research indicated that the best results could be obtained by forcing the disease into remission early on, and Louis would be able to remain home most of the time.

For the first 28 days, Lou received heavy doses of chemo drugs and steroids, and his sturdy little body quickly weakened. His powerful muscles shrank, and gradually he lost all his scruffy brown hair. He began to resemble a small bird that had lost its feathers and fallen from the nest. His much-thinner face looked very different, and he was completely bed-ridden, which was downright depressing for the family of such a joyful, kinetic, little person.

My wife and I immediately took over cleaning, cooking, shopping and laundry duties for my daughter’s family. We moved into their house with them, and soon realized that going home to our house was not an option since Emily and Garrett needed to keep their jobs to maintain their health insurance.

I drove home to Merriam after two weeks, to get our house ready for a long absence. On the return drive to Chicago, my wife called to tell me that Louis had started throwing up and shitting like crazy, and Emily and Garrett had rushed him to the hospital. Emily called an hour later to say Louis was in the ER at Lurie and the doctors had determined he was septic. There was no special infection — simply the microbial stuff we’re all exposed to daily. But Lou’s weakened immune system was at zero, so he had no way to fight off the germs that were attacking him. I gritted my teeth, choked back tears, and assured her I was hurrying to be there as soon as I could.

During a brief stop, my younger daughter called from Kansas City, having heard the latest. Sophia’s own family needed her, or she’d have already been by her sister’s side. “If Lou dies,” she sobbed, “I don’t think I can live.” I told her I was as scared as she was, and encouraged her to stay in the moment. Lou was still alive, he was fighting for his life, and we needed to be present for him and his parents.

Sophia had spoken my own inner feelings with complete accuracy, and it was something I’d never experienced. Sure, I’d lost people: both parents, a sister, lots of older relatives, several good friends. I’d known what it was like when someone dies who you can’t imagine living without. I’d also felt the disorientation of losing someone who felt like a tent stake of my own reality. But this was the first time I’d felt the total dread of the possibility of a loss so profound that I didn’t want to know life without them. Driving on to Chicago from that point was a battle to stay focused.

Astoundingly, by the time I arrived, Lou had transitioned from the ER to the pediatric intensive care unit, and then to a regular hospital room on one of Lurie’s upper floors. With the help of a highly experienced and dedicated medical staff, he was now out of immediate danger, and beginning a pivotal hospital stay that would last 12 long days.

While Louis was in the hospital, Emily and Garrett traded time staying overnight with him. He was never without one of us in his room. We watched hours and hours of Disney’s “Cars” movies and related series with him. He was clearly miserable, but we managed to have moments of joy and even a few hours of simply relaxing and talking together.

But the hospital stay provided other, unexpected life-lessons. I saw critically ill children — even infants — alone in the hospital because their parents had to work, and they didn’t have support from their extended families, for whatever reasons. It was unbelievably sad, but the staff did everything possible to give those kids love and comfort. Riding the elevators in a children’s hospital is an education in itself. You see people stretched to their very limits. Often, strangers share experiences with each other, and offer comfort. It’s a different, more-tenuous world, and a better one in some ways.

My worst day came shortly before Louis was discharged. While returning from the cafeteria with a tray of food, I saw three adults staggering toward the exit, all sobbing uncontrollably. They’d lost a child, or perhaps learned that a loss had become inevitable. My heart broke to see them, knowing it could’ve been us. At Lou’s room, I didn’t want him to see how upset I was, so I handed the tray to Emily, and left to find a quiet place to cry. Once there, all the terror and emotion poured out of me. The flimsy shield of denial I’d been using to cope gave way to bargains with God and all the things we do in the desperate hours. Ultimately, I realized how brave and strong my family had been, and how deeply fortunate we were to have each other. Most of all, I felt profoundly grateful for Louis himself, who had been so courageous during the darkest moments.

Over the past year, Lou’s undergone a steady recovery, perhaps typical of kids who get his type of leukemia. That they can now live full lives is a major miracle, and if you saw him today, running around at day-care, hugging his friends, singing and laughing, you’d never think he’d been sick at all. He’s still in remission, and thanks to data from ongoing research, his maintenance treatment is scheduled to conclude in one year, instead of two.

But despite Lou’s return to his ‘old self,’ the world will never be the same for my family and me. Here are the takeaways I’d like to share:

The stress of caring for a critically sick child overwhelms parents. Both of my daughters and their husbands have had young children with serious health issues, and they all suffered forms of trauma from the experience, requiring treatment. We all deal with these crises in our own ways, but the mark they leave is permanent. Thankfully, losing a child is a step beyond where we are, but even coming that close has had its costs.

Family truly is everything to me. Life makes no sense without my loved ones. We will all drop everything to help each other, and that’s something I will treasure to the end of my days.

In a country with our riches, excellent medical care should be available to everyone, everywhere. Chicago has a top-ten children’s hospital, but there are scores of smaller communities with no medical resources at all within 50 miles.

Health insurance should not be tied to having a job. I simply can’t imagine what it would be like for a single, impoverished parent to go through what my daughter and her husband did. Or a family with fewer resources and more children, when one of them is critically ill. We are long past the time when the puritanical ideals about work as a means to reward are useful, and it’s unconscionably cruel to allow children, or even adults, to bear the burdens of serious illness without the comfort of their families.

When you’re choosing what to support with your money, your time, and your political influence, please carefully consider the type of country you want to live in, and what it’ll take to get there. Maybe also consider voting for leaders who understand the experience of dire need.