As he grew, so did the freckles on his cheeks. Mikey smiled, and everything felt better, even if we were living paycheck to paycheck. Then tragedy hit: a cough that wouldn’t quit, and a doctor’s appointment I wish I’d never had to live through.
He was tired, but what three-year-old isn’t after a busy day? I thought it was a virus. Fatigue, a cough, a nose that wouldn’t stop running. Multiple trips to the doctors, various child-safe medicines, and weeks of begging for more tests came to nothing. Until the fever came, and his little body became a boiler. We ran to the emergency room.
Acute Lymphoblastic Leukemia (ALL).
That’s what the doctor told us. Luke and I sat in the consulting room in shock.
“It’s aggressive,” he said. Something about white blood cells and limited time.
Everything went dark. Only the clock ticked down the seconds, which I knew now were more precious than before. Luke held me tight.
And that was the end of my family as I knew it.
I place the bracelet and teddy on the bed, then take the first piece of paperwork from its resting place. It’s folded neatly into a perfect square. I gently unwrap it.
Patient does not meet eligibility criteria to continue treatment.
Ten months in, and it had been our last chance. A new drug with a pending trial, specific to childhood leukemia. Mikey was accepted for the primary doses. He perked up slightly, but then regressed, barely waking some days.
The doctors told me there was nothing more they could do.
One blood marker fell outside acceptable parameters.
I begged. Like really begged on my hands and knees in the consultant's office.
He said no. The acceptance was withdrawn. That was the end of the road, and we were moving to palliative care.
It’s a feeling I’ll never forget. Staring at that piece of paper, knowing one person on the other end of the keyboard decided his fate.
Luke grieved by holding his son’s hand. I threw myself into research. And what I found was quietly devastating: thousands of patients rejected from treatment programs due to inconsistent data. Thousands of families grieving and loved ones left to die because results were misread. On a few occasions, conscious choices made by scientists to not include subjects who could skew data.
Companies were choosing who could live or die.
And now, so do I.
Day to day, if stocks are limited and patients are abundant.
Now, I understand.
After he passed, my husband and I tried to live on. Luke suggested trying for another baby. Mikey wasn’t to be replaced, and I was never opening myself to that pain again.
He wanted to redecorate. Change things. I said no to it all.
Opengate was born one night when I was deep in a chat room, gathering evidence for a protest against a pharmaceutical company withholding drugs due to non-payment. We had a small group, mostly visible online, who would investigate malpractice. Looking back, we were more like teen sleuths than spies. but it kept my mind busy.
Then I came across her comment. A poster deep in the chat. Her son, three, was rejected from a trial drug scheme. She was adamant he met the criteria. I private messaged her and asked for the paperwork. And my new life course was born.
The paper burns my fingers, not from heat but from loss. I scrunch it into a ball, then throw it on the floor. When I checked, the decision to refuse Mikey treatment stuck. My son didn’t meet the criteria as the document said.
Next, I find my divorce certificate. I’m not sure why I kept it in here rather than the filing cabinet. but it just seemed right.
Weeks turned into months. I was barely home. Luke continued to try to build our family, suggesting dinners and vacations. I only saw Opengate. All I was interested in was the next case to challenge.
Eventually, he left. He wasn’t angry or vile, just tired of our marriage that had died with our son. I didn’t blame him. Part of me couldn’t look at him without seeing what I lost. Him leaving was a relief in the end. Freedom to lose myself in other people’s grief.
He remarried in time. Two kids, a wife, and a Labrador.
I built Opengate, while still living here, with the ghosts of the past.