Category Archives: transplant

DECEMBER 29–Soggy Dollar Boat Days

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Update, 12/30. Kitty and Andrew at the Soggy Dollar.

Caitlin never complained. Her not-complaining actually became a problem—we who knew her best honestly could not tell how she was feeling, because she always put up a good, rather jolly front. Andrew would say, “Hey, Kitty, should we go to a movie today?” Or I would say, “Want to try and go out today?” And there would be a flicker across her face, usually of pain, and she would say, “Maybe,” or “Oh, no way.”

So we came up with a system. Around late morning, she would rate the day from 1-10 (1-10 being her version of a 1 or a 10, not a normal person’s). If the day was a 5 or 6, then yes, perhaps, we might be able to take the wheelchair out, later, and go to the museum for an hour, or go see a movie.

If the day was a 2 or 3, as it often was, just showering was going to be tough—-there was no chance of an outing.

(No day was ever an 8 or a 9 or a 10, fyi.)

At one point during the last couple of years, she told me how any time she looked at photos of the previous decade, she could remember exactly how she had had felt when any particular picture was taken. In all those photos she looked great, looked like she was having the time of her life, but she would point and say, “I remember that night. I was desperately hoping that everyone would want to take a taxi.”  Or, “I wanted to run down that cliff like everyone else and jump and dance around the sand and party on the beach but all I could think was, how will I climb back up?”

I was reminded of this, today, when I was looking for photos for a tribute that’s happening tomorrow.

St. John was/is our place. Our happiest holidays were spent there and the happiest of the happy days were “boat days.” We would board a charter boat, with a captain, at 8am, head over to Tortola to do customs paperwork, then make our way to Norman Island and Cooper Island and maybe Marina Cay, always a stop at Sandy Cay, and always, always, ultimately ending up on Jost van Dyke.

Boat days always ended on Jost, at the Soggy Dollar Bar.

In the early days, when Caitlin’s health was okay and she could keep up, these were her favorite days. Here we are, back in 2004, enjoying boat day. We always took a pal of hers on vacation with us, usually her almost-sister Katie, and also always filled our boat with island friends. Those days were the best. The best of the best. I hope that everyone who reads this post gets to enjoy days like those days were: life suspended, wrapped up in hours of unending moments of sunshine and turquoise and laughter and rum punch.

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But: back to the reason I was reminded of Caitlin’s 1-10 system today. I was looking for some boat day pictures. I was doing this because this world we live in is a ridiculously small world.  Jess’s sister Carly is friends with the people who own the Soggy Dollar Bar on tiny Jost. Tomorrow they are going to honor Caitlin with an organ donor awareness day. They asked for a photo to make a banner and so I was looking for a good picture.

We all have 10,000 pictures on our phones and another 10,000 lost in the ether of the last decade. I know that I took photos of Caitlin at the Soggy Dollar Bar, but could I find one? No. I did find this:

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Taken in 2008 on the eastern side of Jost. We were introducing Katie’s parents, our dear dear friends, to St. John. We were all excited to be there together and boat day was going to be the big event. But soon after our arrival, it was clear that Caitlin had caught a virus, despite her always-vigilant precautions.

The night before boat day, she took me aside and begged me to let her stay home in our rented villa. “I’m happy to just hang out here by myself. I’ll be fine. You guys go and have a good time.”

Caitlin was our life of the party. No one wanted to go on boat day without her. I’m ashamed to admit that I didn’t let her not come. I insisted she suck it up. “We’ll make it comfortable for you, I promise. You’ll be so glad you came. I know you don’t want to miss boat day.”

She gave in and we all got on that boat at 8am. And if you look at pictures from that day, you would think we were all having the time of our lives. The rest of us were. But she later told me that anytime she looked at the day’s pictures she could only remember how horrible she felt.

A week later, our trip had been cut short and she had been admitted to Boston Children’s for  what the CF community calls “cleanouts.” Cleanouts are a few weeks of IV antibiotics and chest PT. They stave off the inevitable, give people a boost, and they worked for Caitlin for much of her life. They worked that time in 2008. She “got better” and  we went back to St. John a few more times. Her last trip was with us, and Andrew, in 2013.

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This is the photo I sent for the Soggy Dollar Bar to use tomorrow. I’m glad I never knew, when I snapped it, that it would be the last one I ever took of her there. Because it was a good day that did not deserve one drop of sadness. A great day. We had snorkeled and lunched and snorkeled some more and swam (swum?) onto Sandy Cay and had just landed at Foxy’s for rum punch and Roti. We were about to get back on John Brandi‘s boat to end boat day, as always, at the Soggy Dollar.

So everyone who  will be at the Soggy Dollar tomorrow for New Year’s weekend: Thank you! Honor Caitlin and don’t be sad. Do remember organ donation and how important it is. Spread that awareness. But savor your delicious painkiller, the nutmeg, the coconut milk, the rum and the sunshine. Caitlin will be cheering you on, all the way.

 

 

DECEMBER 27–Caitlin’s Services

On Friday afternoon, we will be hosting a private, quiet memorial service for Caitlin in an extremely tiny chapel at the cemetery we have chosen. This will necessarily be a small gathering for our American family and her close friends. At the same time, in Wexford, Ireland, her Irish family will be attending a mass that honors her life.

We will be hosting a much larger memorial service and celebration of Caitlin’s life in 2017, during finer weather, for everyone who loved her and was touched by her life. We would be so grateful if you all would join us then! In the coming months, we will decide on a date and I will be sure to post it here.

Here is another tribute to Caitlin, from the Metrowest Daily News, written by the very compassionate Bill Shaner:   Ashland’s Caitlin O’Hara remembered as strong, warm after losing battle with CF

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Bird, by Caitlin, 2014

 

 

 

 

DECEMBER 26–Boston Globe Tribute to Caitlin

Deep thanks to Bryan Marquard and The Boston Globe for writing this beautiful tribute to Caitlin, and publishing it on the front page today: Caitlin O’Hara, who brought compassion to others while she sought a transplant, dies at 33

Caitlin’s death was ultimately caused by her too-long wait. The surgery itself was technically easier than the surgeons had anticipated. That part had gone very well. Her problems were all caused by having been on life support for too long. If she had received those perfect lungs earlier, there would only have been a happy story to tell.

One of the most important lessons that can come out of this tragedy is how vital is the need for organ donor awareness. In lieu of any flowers or gifts to us, please register today to be an organ, tissue, and cornea donor. (The DMV “organ donor” sticker is not enough.) And please help to dispel the wrongheaded myths about donation. Organ allocation is one of the most tightly-regulated and ethical institutions in the country. Register as an organ donor

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Lake Erie, with Andrew, 2015

DECEMBER 24–All is Bright

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“Like the Madonna,” her Irish great-gran would most definitely have said.

It’s Christmas Eve, a night for faith and hope, no matter what your faith, no matter what you hope for.

Last night, a visiting friend said he was angry, said, “That’s where I struggle with faith. How could any God allow that to happen?”

“No, no, no!” I said. “Please don’t think that. I need to remind people not to think that.”

Caitlin would not have changed the fact of her cystic fibrosis.

Let me underscore that: Caitlin would not have changed the fact of her cystic fibrosis.

Caitlin believed, as do I, that earthly struggles make you a better, stronger, and more loving and compassionate person.

I’m no super-strong saint. I’m missing her terribly. Horribly. Unbearably. I fall down on the floor. I curl up and cry. I walk down to the river and pace the lawn and wonder how I’m going to live the rest of my life. Today was the hardest day of all—denial and shock setting in, remembering that just one week ago we were filled with relief and happiness, knowing she had one more chance at transplant. But at the same time, I know certain things to be true: pain and struggle are terrible but all of the mess contributes to the growth of your soul.

When Caitlin was little, she required that I sing “Silent Night,” no matter the season, to put her to sleep. Even though, to me, it was supposed to be a special, once-a-year Christmas Eve song. My entire life, I’d loved Christmas Eve more than Christmas. I loved it to be silent and quiet and sacred—-dark but with a sky full of stars. Caitlin made me realize, from her earliest years, that all evenings could be sacred.

It was raining today and it’s still cloudy tonight. There are no stars to see, but I know they are there. And although I know Caitlin is there, somewhere, in the form of bright, loving energy, I will just miss her so much. Her face, her voice, her charming, lovely human presence. But I want to remind everyone of her own words, just one month before her passing, on November 20, on this blog:

There is so much suffering in the world … so much. My belief though at least is – the world was not meant to always be fair or fun or easy.  The world is teeming with life, and death, and pain, and Donald Trump even haha. We just have to keep living. Step back. We are just tiny beings. There are lobsters living at the bottom of the ocean for over a hundred years. They have just been sitting down there through all of our lives and wars and lives before us. We aren’t that much different from lobsters really if you pull back a little. All part of this teeming painful wonderful world where so much is just luck. But we can choose to be kind, and to keep trying — we have the power.

 “There is a crack in everything. That’s how the light gets in. ” Leonard Cohen

 —Caitlin, November 20, 2016

And her very last words, texted to me to post on December 3, right before she crashed:

I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.

Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.

So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now.  Joni Mitchell’s words feel like permission to let go.

I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.

My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.

Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.

–Caitlin

DECEMBER 23–Remedies for LOVE

We came home yesterday. Our wonderfully kind friend Jimmy C sent his plane for us in Pittsburgh, and Oh my God!—it made for an easy, stress-free transfer, and we couldn’t be more grateful. To just get driven to the airstrip, board the plane, kind pilots, up we go, 50 minutes: home.

Home.

My wonderful sister Kate and her husband Phil were waiting at our house, heat on, food cooking. Over the day, my dear brothers arrived, and friends arrived, and friends have continued to arrive. Jess flew in from San Francisco today and will stay with us until she has to go back for her next treatment. Katie (Caitlin’s almost-sister) came down from New Hampshire. Jacqui, Kenley, Alyssa, Liz—-some of Caitlin’s closest friends are here right now, gathered with other friends and all my family, downstairs, as I write, and it’s wonderful.

We need people around us. Caitlin knew this. We need each other. Being alone is horrible. This past week, anytime I’ve been alone it’s been unbearable, makes me want to jump out of my body. But having people around helps so much. The Jewish custom of sitting shiva is one that I think is so smart, and I’m realizing that what’s happening right now, downstairs, is kind of a combination of sitting shiva and a good old Irish wake. I can’t always interact with all of them, but I’m grateful they are here, and I love hearing the talking/laughing/crying sounds they make.

In Pittsburgh, our condo building didn’t allow live greenery. Caitlin had always wanted a fake white tree with colored lights, so last winter we bought one. This year, we put it up right before she went into the hospital on November 16, and kept it lit as a vigil. We decided to pack it up and bring it home, and I’m so glad we did. From now on, it will be our Christmas tree. Caitlin’s tree.

IMG_4157.JPGWe are grateful that Caitlin’s story is traveling so far and wide. The comments from friends and strangers have heartened us, unbelievably so! To all of you who have written,

“You don’t know me..”

“You haven’t met me, but..”

“I hope you don’t mind ..”

Please please know: we love all of your comments. We love knowing that Caitlin’s short life has made a difference to so many people. It’s the most wonderful thing.

We are also so grateful that the Boston-area media wants to celebrate her life and pass on a) the message of the importance of organ donation, b) the need to change the regional lung allocation system, and c) the need for a new healing garden in Caitlin’s honor, to replace her beloved Prouty Garden. I  spent over an hour on the phone today, talking to the Boston Globe‘s Bryan Marquard, who is going to write a beautiful feature about Caitlin. He then spent another another hour talking with Andrew and Jess.  Bill Shaner and photographer Art Illman of the Metrowest News spent an hour here at our home today, talking with us about the importance of Caitlin’s story. The Boston Herald also wrote a truly lovely piece today, written by Chris Villani. The  photo they chose to use is from this past Mother’s Day and it both breaks my heart and fills it to bursting.   (Herald story)

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This beautifully-lit face! Mother’s Day, 2016

I’m going to keep writing these posts, for as long as I need to. They help me, and I know they are helping the people who loved Caitlin. It’s funny—-I’m a writer but all these years, I  never ever EVER wanted to write about Caitlin’s medical struggles—I felt we had lived them once and once was enough and I didn’t want to dwell inside them. I wanted us all to move on and LIVE. But this is different. These posts are keeping her alive.

We are probably going to have a private service next week, and then a very public memorial and celebration of Caitlin’s life at a later date. I’m not sure where or when—I’m a little wary of planning something during a New England winter. But I will announce it here and we want everyone who wants to come to please come.  (We just can’t do the typical wake and funeral. Standing in a sterile room with a coffin, a receiving line–it doesn’t work for us, and it was something Caitlin would not have wanted, either.)

At one point, Caitlin considered doing a masters in philosophy. She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things. She had no time for crap writing, junk reading, beach reads. No time. I loved that about her, loved that she got so into Virginia Woolf in high school—that she GOT Virginia Woolf at such a young age.

In the hospital, I read aloud to her from Mary Oliver’s new book of essays, Upstream.  We started when she was on the medical floor and fully ‘normal,’ and then continued in the ICU when she was in and out of consciousness. In the ICU, her blood pressure always went up when I read (a good thing on ECMO!) and we joked that she was was liking the Mary Oliver. MO talks about Emerson and Thoreau in some of these essays. They were old soul writers whom Caitlin loved. This little dish was a gift from her, and always sits on my bedside table. Remember the message, friends. It is Thoreau’s message, and it is Caitlin’s message.

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–Maryanne

 

 

DECEMBER 22—Keeping Her Alive

Keeping Kitten Caitlin alive, the way museums do.

Caitlin was, honestly, a bit of an art history genius. She found her calling in an AP Art History class at St. Mark’s School —-looking at slides in the dark, there was nothing better, she always said.  At BC, she received the Art History award, and graduated magna cum laude. She would have loved to have gone on to further study in New York or London or Paris, but her health had already started restricting her.

Here she is, immortalized in Pittsburgh, earlier this summer, at the Andy Warhol Museum. I love how she takes off her oxygen at 3:47.

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DECEMBER 21–Our Light

IMG_4124.JPGWord is getting out, so I will speak. After my light-hearted update yesterday, everything  spiraled out of control. After an early morning EEG which showed slowed brain activity, morning rounds showed that she had no responses at all. Her left leg had no blood flow below the knee, contributing to her worsening condition, and they had to remove it. Then a CT scan showed a massive brain bleed, the one thing she had always been terrified of. There was no hope.

The lung allocation system is so broken, friends. If she had received these perfect lungs earlier, all would be different. She should never have ended up on life support with the score she had. All the allocation systems are different, for each organ. Liver is the only one that works—at a certain score, need overrides all regional allocation.

Her doctors were in awe of her—that her tiny body endured so much and kept going.

Yesterday, Sinead experienced a reading of Caitlin that was urgent and stunning and accurate, as all of her readings are. She spoke to the surgeon, on his way into the operating room, and he listened.

The wisest doctors know that this life is mysterious, and that they don’t have all the answers. The care she received at UPMC was loving and extraordinary. We are grateful.

We numbly stumbled through these last weeks, but looking back now, I realize with horror all she had to endure. She was terrified when she was put on ECMO: essentially locked-in, immobile. For the first two days, she could speak, but got so agitated she had to be intubated and sedated and then she was in and out of consciousness.

And before that? The last two and a half years, every day was a wake-up-and-do-it-all-over-again effort to stay healthy enough to survive the transplant surgery: force down so many calories in an effort to maintain her 97 pounds, lengthy breathing treatments, chest PT, exercise.

IMG_3927.JPGAll the while, she tried to “have a life.” She was teaching herself guitar until she could no longer sit up and hold it properly. She worked tirelessly, from afar, to help create and run the Friends of the Prouty Garden; an advocacy group for Boston Children’s Hospital’s world-famous healing garden. The group, despite massive outreach and supportive press, ultimately failed to save the garden. The day the 65-foot Dawn Redwood was cut down was the day she finally crashed and ended up on ECMO.  I know that seeing that tree killed  killed something inside her.

Nick is broken and strong at once. She was so lucky to have such a giving father.

Andrew—-never was anyone so devoted to someone. Caitlin loved him with all her heart.

Jess flew in like the wind last week, like the angel she is, after having her chemo in San Francisco. She had to fly back for her experimental cancer drug yesterday and so was not here for the end. She will join us in Boston tomorrow.

To all of our family and her closest friends: She loved you all so so much!  She was having an argument with me about something once, not long ago, and she said, “You think all this is important but all that really matters is loving people and being kind.”

We are going to go home and figure out what kind of service to have.

She did not want to be buried. She did not want to be cremated. She wanted a mausoleum and we are arranging that. I know she wants a service where everyone can have a good cry and a couple of laughs. We will figure it all out and I guess I will post details here.

Caitlin and I do believe that the soul lives on. I know she is out there, but I will just miss her so much! She is my soul friend. She is my person. I really don’t know how I will live without her. When she was very sick twenty years ago, I remember thinking, “If she dies, I’ll kill myself.” I know I won’t do that, but this gaping hole is never going to close, I know.

We do have weird things happen with “pennies from heaven,” and last night, as they turned off the ECMO machine, I saw there was a penny on it. Birds, always a motif in Caitlin’s life, were doing all kinds of strange things this week. I wanted to read them as signs she would be okay, but I feared they were signs that she was going off into the light.

Sinead sent me this message this morning:

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Caitlin Elizabeth O’Hara

July 31, 1983—-December 20, 2016

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Today is apparently the darkest night in 500 years. The solstice and an eclipse. Please look at some form of light today and remember Caitlin and the light she carried within her all her life. Share that light. Please keep Caitlin’s light alive.

She loved Freddie Mercury. And loved his cat vest. And this song, which always breaks my heart.