I Went From Fearing My Empty Nest, to Hoping For It. Here’s Why.
By Karen Macarah
When I was a child, I used to worry about what I was going to do when I grew up. Turns out, I was still worrying about that when I was well into my forties.
On October 1, 2020, as the pandemic fog seemed like maybe it was lifting after months of surges and lockdowns, my son Sam turned seventeen. As a student pilot who hoped to one day fly professionally, he had recently flown a small Cessna plane, solo, for the first time. A month later, he completed a successful audition to play upright bass in a local youth symphony, something he had wanted to do for a while, since he was considering applying to college as a Music major. A junior in high school, he had been playing in his school’s jazz band since freshman year, albeit virtually for the past six months, and this was his first opportunity to play in a full, classical orchestra.
Meanwhile, I was starting to think about my own future. My daughter Abby, a fifteen-year-old high school sophomore, was close on the heels of her seventeen-year-old brother. For pretty much as long as these two had been alive, my primary sense of purpose had come from being their mom. While I had also worked outside the home over the years, I had stopped practicing law in 2018, when, after taking time off to care for my mother during her battle with cancer, I realized I didn’t want to return to that career (and was lucky enough to have a kind and patient husband, who understood and supported that choice). Before the pandemic hit, I had also started re-cultivating my passion for theater, performing in local productions and even writing and performing a couple of my own shows, but the past few months of theater closures and social distancing had put a damper on any aspirations I had to get back on stage any time soon.
So while Sam was soaring into the blue yonder, literally and figuratively, I was fretting about what I would do when he and his sister would soon leave home to go to college, one right after the other. High school was going by so fast; it all felt so fleeting. Sure, I would always be their mom, but the daily tasks associated with this job title were falling away rapidly, and I knew I would soon find myself out of full-time “mom” employment — a mere consultant, at best.
This was my psychological backdrop when, on a rainy and grey morning in late January 2021, I took Sam to the ER at Children’s Hospital Los Angeles with a high fever and a steadily worsening pain in his hip joint. Our pediatrician thought the hip pain warranted a visit to our local ER, but I decided to take him to Children’s Hospital instead, since all the other area hospitals’ emergency rooms were crowded with Covid patients. I had been a bit worried that maybe the hip pain signified a staph infection — our friend’s daughter had recently had one. I knew that perhaps I was being neurotic, figuring it was probably something much less serious than that — but we went to the hospital anyway, out of an abundance of caution. While Sam sat in the triage room waiting for the results of his bloodwork, I popped out to a McDonald’s drive thru next door to get us some food — as is often the case at an ER, we had been waiting for a while, and we were hungry.
While Sam and I were scarfing down cheeseburgers and chicken nuggets, a stoic-looking social worker and doctor came and asked to speak to me outside of Sam’s earshot. They took me to another small, empty room and told me to sit down, and they did too. They then told me that Sam had acute promyelocytic leukemia, which required immediate treatment, and that he was being admitted to the hospital that day, to start treatment that night. The recently eaten fast food churned in my stomach as I struggled to get my bearings and process what they had just told me — leukemia? What??? Going back into the triage room to explain what was happening to my six-foot-two, almost-adult child was one of the toughest things I had ever had to do up until that point in my life. Little did I know there were things coming which would be much tougher.
After a couple hours more, they moved us upstairs to the fourth floor — the hematology oncology unit. A comforting elder-statesman-type oncologist came to explain the treatment protocol to us — blood and platelet transfusions as needed, which, as it turned out, Sam would need quite a lot of; a chemo drug in pill form that he would start taking immediately, called ATRA, and daily doses of Arsenic (yes, THAT kind of Arsenic — turns out it’s used as medicine too, who knew?) which would be delivered intravenously. Sam would get a PICC line installed in his arm to make delivery of the medicine easier, and hopefully after about a month or so in the hospital, Sam would be headed home, the worst part of this disease behind him, on his way to recovery with an engaging college admissions essay topic in his back pocket. It all sounded manageable; okay, even. As is often the case, things didn’t go according to plan, but on that first day in the hospital, I convinced myself this was a temporary blip and we would soon be back to normal life.
The next day was a Sunday — Sam’s first full day inpatient — and it was also the first scheduled Zoom meeting for Sam’s new orchestra (which was meeting virtually due to the most recent Covid surge). Sam still had his fever and the pain in his hip, and he was pretty out of it, but not feeling too terrible — yet. I logged on with our camera off, determined for us to show up and try to keep up, so that he wouldn’t lose his place playing with the symphony that semester. The hospital room was chaotic, with nurses, doctors and orderlies entering and exiting, and Sam certainly not up to paying any kind of attention to the Zoom. I sent the administrator a note: “sorry, we’re in the hospital with a medical issue, we’re going to stay off-camera and I’ll call you this week with an update,” hopeful that if we just stayed in the loop, Sam wouldn’t fall too far behind, and he could easily re-join rehearsals when he was feeling much better in a month. (Turns out denial is not just a river in Egypt).
Things quickly went downhill after that first day. As the leukemia and the treatment made Sam sicker and sicker, he became more and more miserable. He couldn’t sleep, he was feverish, in pain, nauseous, and nothing seemed to help. His dad and I were with him ‘round the clock in the hospital room; none of us was getting any real sleep. After dozing off for a couple of hours on a night I was there alone with him, I woke up crying from a dream in which my dead mother had appeared to me. In the dream, she gazed at me somberly, wordlessly — I didn’t understand what she was trying to tell me. I felt full of dread — I believed in my soul that Sam was going to live through this, but my mother seemed to be trying to deliver some kind of ominous message. A nurse happened to come in at that moment, and as I cried, he embraced me and reassured me (the nurses at CHLA happen to be actual living angels). But as it turned out, maybe my mother had been delivering an ominous message, after all. The next night Sam experienced a spontaneous bleed, something that can happen with this type of leukemia, and it pushed on his spinal cord, paralyzing him from the waist down. When the doctors finally figured out what had happened, after I watched my son experience excruciating pain the likes of which I have never witnessed anyone experience before or since, Sam was too sick to operate on, since he had next to no platelets, and therefore no clotting ability. We were told by a neurosurgery fellow that Sam would probably never walk again. We were transferred to the ICU that night, although we couldn’t understand why, since it seemed to us then that there was nothing they could do to prevent Sam’s permanent paralysis.
I will never forget our ICU nurse, Brandon, who spent the entire night running in and out of our ICU room plugging Sam into various IV pumps — platelets, hemoglobin, fresh frozen plasma, Idarubicin (a more toxic chemo drug used in complicated APL cases), and more Arsenic. Sam had at least two IV’s going in each arm and each leg. The nurse never seemed to stop moving throughout the entire night. In the morning, a veritable army of doctors showed up at our room. The head neurosurgeon, Dr. Susan Durham, a warm woman whose face radiated kindness, even behind her medical mask, explained that due to all the medicine and blood that had been administered to Sam throughout the night, Sam’s platelets had reached 90,000 per microliter, just high enough for them to perform a (still risky) surgery to remove the mass that was pushing on Sam’s spinal cord. I asked Dr. Durham if she would want her child to have the surgery if she were in this situation, and she answered unequivocally — “yes.” And then I asked Sam.
He was barely coherent, so sick and delirious by then that I wasn’t sure he would know what was going on, but when I said “Sam, these doctors are here because they want to do a surgery so that you will be able to walk,” he told me, “yes Mom, we need to do it; everything is going to be okay.” And that was it. They whisked my six foot two, seventeen-year-old baby away to the operating room.
We put out an all-points bulletin to everyone we knew, e-mailing friends and family near and far asking for all of the thoughts and prayers and positive energy they could muster. Friends organized a Zoom in the middle of the day so we could talk and pray with whoever could make it. We sat for hours outside the hospital with my extended family on that cold February day, since they weren’t allowed inside the hospital due to COVID protocols. Finally, the surgery was done, and I could see Sam again. He was almost unrecognizable due to how bloated he was from all the medicine and fluids administered during the surgery, but he was alive; what Sam had assured me that morning felt true — everything was going to be okay.
Of course, it wasn’t all okay, because he was still so sick with leukemia, and still couldn’t move his lower body. In the ten days following the surgery, my formerly goofy, optimistic and happy kid withdrew into himself, and I feared that he would remain that way. His dad and I tried to reassure him that things would get better, that he wasn’t alone; but cut off from his sister and everyone else, and wrestling with the prospect that he might not recover from his injury even after he recovered from the leukemia, nothing we said brought him out of his funk. But after I managed to sneak his sister Abby into his hospital room (despite hospital rules prohibiting visitors), she fell into his arms, both of them crying, and everything changed. Sam later told me that this was the moment he realized he had to do whatever he could do try to get better, not just for his own sake, but for the sake of the people who loved him so much. It would be another week until he was able to slightly move his toe, then barely but perceptibly move his leg, but slowly, slowly, movement started to return to his lower body. More importantly, Sam’s positivity, his desire to get better and to live the best life he could, returned as well.
The road to recovery from leukemia and his spinal cord injury was long and arduous. We spent two more months inpatient at Children’s Hospital L.A., followed by two months of intensive outpatient rehab at the Shirley Ryan Ability Lab in Chicago, while he continued to receive cancer treatment at Chicago’s Lurie Children’s Hospital. I spent all of my time with Sam, caring for him alongside an amazing team of nurses and doctors and orderlies and therapists. I researched outpatient treatment centers for spinal cord injuries; I WebMD’d every symptom that cropped up, every anomalous result on his blood and lipids panels, every infectious disease or fungal infection which might be causing his relentless neutropenic fevers; I researched whether people in wheelchairs could still become pilots, or play the upright bass (the answer to both is yes). There were many tough moments, but there were also a lot of joyful and beautiful moments we shared in the various hospital rooms we temporarily called home for those months.
I had gone from worrying about what my life would look like once my children flew the nest, to worrying whether my child would ever have the opportunity to fly out on his own. I wished with all my heart and soul that he would.
And sure enough, he did. On his eighteenth birthday, October 1, 2021, Sam received his last chemotherapy dose, and today he is cancer-free. He also slowly but surely recovered mobility in his lower body. Over the course of several months, he went from gurney, to wheelchair, to crutches, to walking on his own. He still limps a bit, and loves to show off his party trick of having friends prick him on the right side of his torso, which still is and always will be numb. He’s probably never going to take up jogging as a hobby, but these days he’s golfing and flying and playing his bass and living his life as a college sophomore. His sister remains close on his heels, a college freshman. I’m so deeply, deeply grateful to have two kids who have flown the coop and left me behind. And so now, on the eve of my fiftieth birthday, with two kids out of the house and my full-time mom gig behind me, I just need to figure out what I’m going to do when I grow up.
Karen, Sam, and family serve as Ambassadors for the St. Baldrick’s Foundation, working to raise awareness and funds for childhood cancer research.
