Diagnosis

It started with a limp, really. 

Our toddler, a normally rough and tumble little bowling ball, twisted his ankle and didn’t stop limping for weeks. It didn’t make any sense. Normal for him was to run-stomp through the house yelling, “Mommmyyyyyyy, I want a snaaaaa-aaack,” in his sing-song voice. I can still hear the sound his shoes made on the old tiles in the kitchen as he burst through the garage door. This boy didn’t walk. He ran, stomped, shuffled, speed-crawled after the cat, but whatever was the most fun or silly mode of foot-transport was what he would choose. So twisting his ankle while wearing green St. Patrick’s Day socks seemed like something that shouldn’t have slowed him down.

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He was in pain, so we took him to the doctor right away. Our doctor ordered an X-ray at an imaging center across the street from his clinic, which showed nothing. Ben kept limping. The teachers at daycare told us he’d spent most of a day crying a couple of days later, which was so unlike him it shocked me. We took him back to the doctor, this time for an ear infection, and we mentioned, oh by the way, Ben’s still limping. He sent us to a pediatric orthopedist, who found nothing after more x-rays and all the tests she could think of. Finally, we took him back to the doctor, this time for an overnight fever of 104, and he said to us, Hmm is he still limping? We said yes, thinking, isn’t the fever a bigger deal right now? But our doctor ordered a blood test. 

Low hemoglobin. 

The immediate unspoken fear was cancer, but I spoke it, thus saying a word I couldn’t begin to figure out how could fit into our life, on the phone to the doctor whose diligence saved our boy, thinking I could face it if I knew what was coming. Yes, it could be cancer, he said, but there are other possibilities. 

We took him to the ER at the small hospital nearest to our house, only ten minutes away. I drove in a fog of panic forced down under a weird calm I pulled out of somewhere unnatural. But Ben couldn’t see me scared, so I needed to not feel scared. Being basically unable to fake emotions, I had to BE calm. I couldn’t pretend or all would be lost, and I wouldn’t be good for anything. And this became my new pattern I had to struggle to correct. Pretend I feel ok, force it down, keep moving. We were in the ER for so many more hours than I remember. He got a blood transfusion, the first of many, right there in the uncomfortable little emergency room bed, my body folded around his little one as if I could protect him from what was already happening inside his bones. My mind was unable to wrap itself around the reality of what was happening in front of me, the red tube connected to my baby boy’s arm, pumping life into him. We rode together in an ambulance, something I kept trying to refer to as an adventure, to a nicer and better equipped hospital in Chicago, and we were checked into the room where we’d stay for the next 9 days. There was a Spider-Man decal on the wall outside the room. I tried to make a big deal out of this and say the nurses knew the right room to put him in. 

We met new doctors and nurses. I didn’t cry. I can only remember those hours because I wrote about them that night and have re-read my journal entries. Those memories have been erased from my internal harddrive. Most of what I wrote about was how much pain he’d been in before he started getting the transfusions and how much happier he was on those first couple of days in the hospital than he’d been in weeks. He’d been so clingy and inconsolible. It was all understandable after the fact, but I’d been such an asshole leading up to that time about how I never got time to myself and how he’d been needing to be on top of me ever since we’d gotten back from our trip. I thought we’d broken him. Matt and I had taken a belated tenth anniversary trip at the beginning of March, right before the initial ankle twist, and he was kind of a monster while we were gone, behavior which increased steadily after we got home. Again, in retrospect, it all made sense, but those weeks leading up to diagnosis were terrible, a fact I often forget. He had been in so much pain and didn’t know how to tell us. We didn’t understand.

After he finally went to sleep, I googled the symptoms of leukemia. He had all of them, down to the night sweating. There was no doubt in my mind what the diagnosis would be. An expectation of the worst was a comfort to me because I didn’t want to be shocked by bad news. We came to understand that his diagnosis, if one has to have cancer (which is another discussion entirely), is the diagnosis one hopes for. It’s treatable, known, and predictable. The steps have been tread and worn by millions of kids who came before him, and in turn, he can help provide some data for kids who come after. 

The time spent in the hospital was tiring but regimented. It went by quickly and was full of people who were there to help take care of him, of us. The nurses were all incredible human beings, and people kept bringing him toys and art supplies. But nine days spent mostly in one room is not a good way to live, and all I wanted was to go home, to bring our boy home. I thought I knew what to expect upon coming home. I was so wrong. From the moment we left the hospital, nothing went as I’d expected. The relief I counted on never came. The fear rooted itself and grew, the anger dug in deep in my soul and waking mind, and it overshadowed the fear like a fungus. The steroids tore everything else to shreds. 

My self-talk went a couple of different ways. I would find myself thinking about all of the other people who had had this type of cancer and conquered it, the fact that he wasn’t going to die, though the road might be hard. I thought maybe I (and everyone else) was making too big a deal of this. We would follow the steps, and he’d come through in the end. No story there. People make big deals of nothing all the time. That’s what half the internet is. If I pretended it was nothing, things would go back to normal, right?

But then in my more rational moments, I let myself feel this situation deeper, let myself go beyond what I thought a tough person (maybe read: unfeeling, numb person) would feel. I had moments of being able to let go of self judgment or my expectation of the judgment of others (I absolutely expected the worst from everyone at all times), and I just felt sad. Our little boy, our joyful, curly-headed, bright, rambunctious little boy had leukemia. “Good” leukemia, but a terrible thing nonetheless. 

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