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

Ceili would be 25 today.  She loved birthdays— the cake and ice cream, the attention, the gifts.  This birthday has me thinking of the gifts she gave me, Leslie, and John.  The most useful are about healing.

 

We’ve been spending a lot of time with Gracie lately.  The last few days we’ve been camping and hiking with her at our favorite corner of Shenandoah National Park.  Gracie is Ceili and John’s dog.  Ceili wanted to train her to be a therapy dog, I think because the therapy dogs at Children’s National made her feel so good.  But she didn’t live long enough to get Gracie the formal credentials.  Gracie was a wild and goofy 9-month-old pup when she came into our lives.  We joke that she really ended up a therapy dog because ever since we got her we’ve needed therapy. But over the last year she has settled down a lot and she does give us a healthy dose of love and affection.  And who doesn’t need that in their life?

 

The best part of having a dog is the unconditional love.  No matter what’s going on in my world or hers, Gracie is always happy to see me and that makes me happy.  Brushing her and picking out briars after a long run in the autumn woods is a curious situation:  she loves the attention but does not love the brush.  She tolerates 30 seconds of brushing, then escapes across the room.  And when I call for her she wags her tail and dances back to me for another 30 seconds.  It’s like she completely forgot that the brush will be involved and it will be my attention only.

 

Ceili was, I think, particularly successful in balancing doses of things, like dogs, that helped her heal— emotionally, spiritually, and, to some extent, physically as well.  Here are some of those things, a sort of birthday gift from her . . .

 

Seek peaceful places.  She sought out places that brought her peace, places with mountains and water. The Creekhouse was strong medicine.  Our last day at home between long chemo treatments for leukemia she chose to come up here, to the mountains.  It was June and the day was long. We walked and enjoyed the sunshine and cool mountain air.  She came home steeled for another long stay in the hospital.  

 

Hospitals are healing places, but they are also places of trauma, pain, and isolation.  Ceili managed, with the skill and support of staff at Children’s National, to make that hospital a place where she found emotional healing, too.  She made friends there among the staff and patients, and they welcomed her family and outside friends any time they could come.  And they came often!

 

Keep hope.  She preserved hope.  Despite her decision to end treatment Ceili continued to entertain discussions of therapies that Leslie and I and others presented, and when she was accepted into a clinical trial at NIH shortly before she died, she cried tears of joy.

 

Pursue joy.  Ceili pursued joy despite her terminal diagnosis and bouts of depression, anxiety, and pain— joy from art, music, movies, travel, and most of all friendships and love.

 

Find purpose.  Ceili found value in daily living and doing things that brought good to those around her and to her community.  She was a strong advocate to the end, and that advocacy gave her strength.

 

Love and allow yourself to be loved.  Most importantly, Ceili found healing in the people she loved and who loved her.  She found— maybe created— a community of love that sustained her.  Ceili loved spending time with her brother and her friends.  She loved meeting new people and becoming friends with them. While this appeared marvelous, even magical, from the outside, I suspect that for those within her orbit it felt normal— the way life is when you get to be a young adult and Ceili is near.  

 

It was not magic.  It was rooted in a physical law of nature: the world is reciprocal.  The love she gave she got back.  And she gave a lot.  For people like me, it often feels risky to give love.  There’s fear of rejection, fear of being vulnerable— fear that love will be used to manipulate and take advantage.  But Ceili showed that love given is a down payment on love to be returned with interest. Vulnerability and possible rejection, to Ceili, were merely the costs of being in the business of love.  And love is a powerful healer.

 

All these things Ceili taught by example, gifts she left us.  And Gracie is our daily reminder of these lessons:  be open, be vulnerable, take risks with your love, and love without condition.

 

PS. I’m poor at technology and replying to comments, and I see that several people have made nice and thoughtful comments on past posts.  I thank you all and will try to be better!

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