Community and Shelter from the Storm

As you travel through life, you end up the member of lots of communities – even if you’re like me, not much of a “joiner.” I started off with a gigantic extended family, then added school and church communities, work and professional communities, people who listen to the same music and hold the same political ideals as I do, people in interfaith families, like-minded parents and a city full of passionate Baltimoreans. But six years I landed squarely in a community that I had virtually no awareness of before I earned my extra-special entry card. My daughter Hope was born on the 17th day of Down syndrome awareness month in 2010.

The night after we learned of her diagnosis, I sat in the hospital room watching her breathe under the warm yellow lights casting out her jaundice, prepared to rescue her from the little eye cover that kept slipping over her mouth. Into the wee hours I devoured the book on Down syndrome the geneticist had given us. A few days later I crept into the Down syndrome community as a lurker on several listservs. Slowly our family of five became more acquainted with this new diverse group of families who seemed eager to have us aboard. We attended a couple of national conventions and a few local events, warming to our new community.

And then, on Valentine’s Day of 2014, we found ourselves in a different hospital, receiving a very different diagnosis – one that landed us in a community that no one ever wants to join, but unfortunately suffers no shortage of new members. At 3 years and 4 months Hope was diagnosed with pre-B cell acute lymphoblastic leukemia and because of her extremely high white blood cell count she was labelled “high risk.” We were lucky to live 12 minutes from Johns Hopkins Hospital, with one of the best pediatric oncology departments in the country; we began treatment immediately.

Leukemia is 20-30 times more likely in kids with Down syndrome than typical kids; about 2-3% of people with Down syndrome develop some form of leukemia – usually either ALL like Hope or AML (acute myeloid leukemia). I had read those statistics at some point, but Hope had always been in remarkably good health. She was off the DS growth chart, had only a small PFO (hole between the atria of the heart) at birth that had closed on its own, and was rarely sick. None of that mattered now – nor did her first steps at 15 months, her dozens of signs and words, her preschool successes. We were adrift.

Within days our social worker had provided us with the names of cancer support groups, but needless to say I was reluctant to join. I had already joined a community for support around Hope. But there was a problem. I feared that our family had become the worst nightmare of families who love someone with DS. Who would want to be reminded of those statistics? Of this grim reality?

When I didn’t find anyone close in our local DS community who had traveled this road, I did what people do – I turned to Facebook. Two months into Hope’s treatment I joined a group called “Down syndrome and Leukemia” and those DS-cancer moms became my lifeline. They understood what a cancer support group for the parents of typical kids never could – how unfair it was that our kids who had already faced such challenges should be confronting this battle, what side effects were normal for our kids that even the docs might not know, how to help our kids cope with the bizarre world of pediatric oncology, and how to turn all that preparation for educational advocacy into medical advocacy.

Months went by at both a snail’s pace and in a blur. Hope did amazingly well. When she felt rotten, she watched Barney on the iPad. When she felt good, she danced and sang and played. We went to clinic for chemo and transfusions, blood counts and lumbar punctures. We had inpatient stints that were rough, but Hope loved being with her favorite nurses and we found ways to keep her entertained. She liked to have dance parties in the mirrored area next to the elevators on the 11th floor – commanding every new arrival to dance to her favorite Taylor Swift or One Direction song. Try saying no to a cute bald kid in her PJs + tutu + superhero cape, dragging along an IV pole, who yells “DANCE!” at you as you innocently step off the elevator. We rocked that place!

As we neared the end of her frontline treatment, one day I got a call that there was a new patient on 11 South, a little girl about Hope’s age with Down syndrome who was just diagnosed with ALL. That afternoon I met Lori and her daughter Amanda. I think Lori wept that day with the overwhelming fear and uncertainty of the initial shock, and I wept knowing what they were about to face and the unfairness of it all. But if I’m honest, I also cried in relief that we would face this journey together; that neither of us would be alone.

And then, another plot twist, the community I thought would run in fear from us because we represented the embodiment of their worst nightmares turned out to be so much braver and bigger-hearted than that. One day in early December 2014, I found a letter and a check in my mailbox. The letter explained that our local DS group, CDSPG, had started a fund to support children with Down syndrome and leukemia in our area in honor of Hope and her new friend. To date, the Amanda-Hope Medical Assistance Fund has distributed almost $4,000 to five families from the Baltimore area whose children are battling this pernicious disease.

These days Hope is done with treatment. She’s a regular kindergartener who loves to sing and play restaurant, who hates vegetables and loves vanilla ice cream cones, who worships her big brother and sister and is so extraverted I have learned to double the time I think every errand will take to account for the zillions of conversations we will have with strangers along the way.

There are so many things we have learned from our experiences in Cancer-land, but one big takeaway is a deeper understanding of the broad umbrella that is our Down syndrome community – a community with more than enough support for all of us, whatever challenges we might face. Sometimes we have to seek out that support, but sometimes that shelter from the storm just appears over your head when you really need it.

About the Author: Liz Zogby lives in Baltimore City with her husband Greg Katz and their three children, Celia (14), Quinn (11), and Hope (6). A freelance researcher and writer, Liz serves on the Governance and the Diversity & Inclusion committees at her younger kids’ school, City Neighbors Charter School, an inclusive, arts-integrated public charter school in Baltimore, and is on the board of CDSPG focusing on city outreach. She blogs about life after Hope’s diagnosis with leukemia at