Ceili’s Story

Site created on July 13, 2013

Welcome to our Caring Bridge website.  We've created this to keep friends and family updated on Ceili's progress and to give everyone an easy way to send words of support and encouragement.

In April 2013 Ceili began to experience pain in her upper back which came and went, but kept coming back.  We treated it as a muscle issue (pull? spasms?).  As they say in med school, "When you hear hooves, think horses not zebras."  After a few trips to the doctor and unsuccessful treatment, she got an X-ray on July 1 that showed a mass in the upper thoracic area.  The next day we were at Children's Hospital in DC where further tests showed a largish (8cm) tumor.  On July 10 we got biopsy results and the definitive diagnosis:  Ewing's sarcoma-- cancer. 

Sometimes those hooves are zebras . . .

So we've started a journey.  We are really fortunate to have an incredible team of doctors, nurses and staff at Children's guiding us, and fantastic family and friends along too.  Ceili's pediatrician has also been amazing.  Because she's so fit and healthy (otherwise), and has a great attitude, everyone feels pretty good about the road ahead.  It's rocky at times, but also shockingly beautiful in unexpected ways.  To quote our dear friend Michael:  every day is one step closer to the finish line.

Newest Update

Journal entry by John Leahy

Five years ago today, Ceili and I had one of our favorite days together.  It was a perfect fall day full of color and light.  We were at the creek and a bunch of her friends were coming later to celebrate her 19th birthday. John and Leslie were arriving later, so I had Ceili to myself all day, and the night before, too.

Cate and I set up a camp for Mom and me in the woods so we could give the youths some space.

Ceili loved camping and setting up a camp.  Some of my best memories are of camping in Montana, Maine, Canada, and, of course, Virginia.  Ceili and John were the best campers— so methodical in getting everything organized and set up while Leslie and I tended to food.

We found a good spot overlooking a ravine.  We cleared a place for the tent, made a fire ring, and set up the camp kitchen.  We both knew this would likely be her last birthday with us, but we were completely in the moment which made it beautiful.

As I write this, watching the sun work its way toward the water, a monarch butterfly with a missing lower left wing who has been with us all day, is fluttering around us.  Butterflies always make us think of Ceili.  We worry it won’t make it’s long journey south with that wing.

For Ceili’s birthday this year we are going to enjoy a visit with John.  It will be socially distant but spiritually close, and we will enjoy the bounty of the river while supporting Friends of the Rappahannock, one of our favorite local environmental groups.

We are also writing letters for causes that Ceili believed in.  Ceili was a gifted writer and this seems a good way to honor her on her golden birthday— 24 on October 24th.

We ask you to consider taking 20 minutes to write a letter (or email) to fight racism, or to support a young person who is in danger because they stood up for a cause they believe in.  Or take 5 minutes to sign a petition or make a donation.  Here are some ways:

To fight racism, write a letter in support of two pieces of legislation currently before the U.S. Senate:

The first is the John Lewis Voting Rights Advancement Act, introduced by Senator Patrick Leahy (!) and named after the seminal congressman and civil rights leader (whose wife Lillian served as a Peace Corps Volunteer in Nigeria).

The second is the Justice in Policing Act, introduced by Cory Booker, which aims to hold law enforcement accountable for misconduct in court and reform police training and policies.

Here’s how to contact your senator:  https://www.senate.gov/senators/How_to_correspond_senators.htm

Alternatively, Amnesty International’s “Write for Rights” campaign is now focusing on young activists in grave danger because they acted when adults did not.  Click here to learn more about them and how you can help: https://www.amnesty.org/en/get-involved/write-for-rights/

We love seeing the release of prisoners of conscience for whom Ceili wrote letters as part of Amnesty’s campaigns.  Your words can change their lives and make their communities freer and more just.

The joy we feel when our family is together enjoying the bounty of a clean and healthy environment cannot be shared by many families— those whose loved ones are persecuted, or whose communities are exploited for others’ gain.  Inspired by Ceili’s work and writing, our gift this year is to further her work for a more just and sustainable world.

For Ceili.

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