The Down syndrome and the heart defect? They seemed like big enough things to me. Surely, I thought, we will be able to deal with this. It will be difficult at first, but we will do what needs to be done about Archie’s heart, and then we’ll adjust our expectations so that they factor in a diagnosis of Down syndrome, and we will move forward and beat on.

So when the neonatologist told me that Archie, my precious, days-old baby, had what would be considered leukemia in a child without Down syndrome, a very rare condition that may someday develop into full-blown cancer, I lost what little control I had of my bladder after a lot of hard pushing during delivery and I peed my pants, right there in the NICU as I stood beside Archie’s rolling basinet. Maybe I should be embarrassed to admit that, but I’m not. It is, I think, a great description of how completely disarmed and utterly helpless you feel when you’re told you’re child has cancer.

This very rare condition with which Archie was diagnosed as an infant is called transient leukemia, or acute myeloproliferative disorder, or leukemoid reaction, is usually seen in infants with Down syndrome at or soon after birth. In a baby with transient leukemia, the blood and bone marrow show changes which appear typical of leukemia. In most cases, the blood and bone marrow of children with transient leukemia return to normal without treatment. But in about 20 to 30 percent of cases, infants with these blood and bone marrow changes will develop leukemia. We were told in those NICU days that there is no test which can distinguish between transient leukemia and true leukemia, and that the diagnosis of transient leukemia could only be made after the condition has spontaneously cleared up.

Archie’s blood counts worsened in the days following his birth. At one point Archie’s white blood cell count was in the 100,000 range with his blast cell count, or cancerous cell count, in the 80 to 90 percent range. We signed consent forms allowing the doctors to begin chemotherapy should the counts not trend downward by the next morning. We were told Archie would most likely not survive treatment at this time due to the severity of his heart defect, as well as the infections plaguing his body at that point of his journey. We hoped, and prayed, and bargined with God, and somehow, someway Archie’s counts trended downward the next morning and we were out of the woods, for then.

Time moved forward and our attention was consumed by other things… Archie’s quick decline, his heart surgery, and then his nearly miraculous healing and our slow routine to normalcy. From time to time worries about Archie’s unusual blood counts were brought to the forefront by a doctor or a blood test, but we got very good at ignoring talk of this sort and seeing only the positive in the doctor’s words. “But there are less blasts now than before, right?” John would press the doctor, the both of us searching for the promise in his eyes.

And although that is what I said out-loud, to Archie’s doctors, to friends and family, inside my concern grew a little bigger, a little uglier, each time I took Archie for another blood draw as I suspected the day would come when we’d have to pay the piper.

When I was only a few months pregnant with the twins, Archie began a preschool program at the Meyer Center for Special Children. I was so excited to send my son to school. John and I had high hopes; our dreams felt refreshed.

At the Meyer Center our son’s teachers and therapists gave Archie a safe, nurturing environment in which to thrive. Everything Archie needed to advance was accessible to him, to us. But my son cried each day I left him at school, and the child the teachers and therapists came to know wasn’t the Archie I loved.

Only a few months after he began attending school Archie was diagnosed with acute myeloid leukemia, or AML. John was stunned. I was angry. Although I had silently worried about this diagnosis since Archie’s birth, I hoped that surely, someway we’d escape it. It seemed so unfair that Archie would have to suffer this trial, too.

We spent the summer in the hospital, and most of the fall, too. Archie was very ill when he began chemotherapy, but he flourished with the treatments. You see, although children with Down syndrome are more likely to get leukemia, they also respond better to treatment. Scientists say this is likely due to a genetic mutation found only in children with Down syndrome. The very thing that increases a child with Down syndrome’s risk of getting leukemia is the very thing that cures him.

Archie returned to class at the Meyer Center after he completed treatment, and has been there nearly every day ever since. Now in remission for over a year, our little boy is a renewed child. We delight in his accomplishments, and are often surprised by his progress. Each achievement, however humble, feels like a tiny miracle.