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.

We 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)

Screen Shot 2016-12-23 at 6.19.21 PM.png — *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.

–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.

http://warholscreentest.com/v/AWM/Caitlin_s_Screen_Test-63603419257002

DECEMBER 21–Our Light

Word 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.

All 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:

Caitlin Elizabeth O’Hara

July 31, 1983—-December 20, 2016

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.

DECEMBER 20–O.R. Revolving Door

The team just rounded. A chest tube on Caitlin’s left side is draining a bit more than Dr. D’Cunha likes. “She’s not unstable but I need to take a look. Clean her out.”

Last night, he said she would have a standing slot in the OR, every day for a while, in case they need to go in like this.

She’s still critical and will be for a while. In the red zone, as Andrew says.

We all feel the prayers, the intentions, the healing energy, the Buddhist chants, the love, all of it. All of it. Thank you, thank you.

–Maryanne

PS. Happy birthday, Uncle Fun Fun.

12/19–Verdict: No Real Sign of Trouble

Caitlin came back from her trip to the OR. Her surgeon and his fellow thoroughly searched for anything that could be causing the high lactate levels. The good news was that they did a deep and thorough search and everything looked good. No dead tissue to be seen. The liver is likely the problem, because it is swollen, still recovering from deep trauma and the blood pressure meds it had to process. But it’s working; it is not dead. So it looks like it needs some time to heal from the shock her body’s been through. We have to hold tight. Be patient. Remain positive.

Some good news was that her chest had stopped bleeding. The surgeon was very happy about that. Also, the left leg looks okay, like it’s not the source of the lactate trouble, but they will be keeping a close eye on everything, of course.

Friends, this is going to be a slow and atypical recovery, and we are going to have to learn to live with that—-with uncertainty and worry and relief and more worry and hopefully, a final blast of relief.

Honestly, it all feels like a game of whack-a-mole.

But….. Dr. D’Cunha really made us feel okay tonight. As we’ve learned in Boston, there are so many doctors in a teaching hospital that you learn to be careful who you listen to. One guy said something really stupid over Caitlin today, in front of Nick. (“Might have to amputate that leg.”)

Nick dealt with him.

Dr. D’Cunha, referring to that, said, “Caitlin has two doctors—-me and her (pointing to the wonderful Lara, his right-hand fellow). “We’re the only two you listen to, and when she’s talking, she’s talking for me, okay?”

Okay! Happy to have her in his good, life-saving hands.

I also put a sign above Caitlin’s bed: Positive Talk ONLY Around Caitlin, Please !!!

Thank you, all, for all of your continued prayers and light and love. What a blessed holiday season this has been for us, and, I hope, for all of you.

FEROCIOUS POSITIVITY CONTINUES

–Maryanne, with Nick, Andrew, Jess

PS: In the spirit of the season, I think Caitlin would be really happy if I posted this picture of Henry for a little dramatic relief.

Screen Shot 2016-12-19 at 8.57.13 PM.png — *Henry the darling reindeer*

🎶 🎶 🎶 🎶 🎶 🎶 🎶

12/19, 5:30pm — Into the OR

Let’s hope they find something that’s causing these increasing lactates! This OR trip is proactive and good. Caitlin has a great medical team!

My aunt just asked a good question: Is she aware that she’s been transplanted?

The answer is YES.

She’s listening. We told her. We told her that the lungs are perfect Harry Potter lungs that are a perfect fit. Her blood oxygen saturation is 100 percent. (Before transplant, it was in the low 80s.) The pulmonary pressures on her heart have gone way down. As soon as the rest of her regains its previous good health, she’ll be able to enjoy her new ability to breathe again. What a gift, what a tremendous, generous gift.

All we know of the donor was that he/she was very healthy.

—The Team

DECEMBER 19–Another OR Visit

So Caitlin wasn’t going to make this a Hallmark Christmas miracle, no. That’s too easy, too sentimental, and Caitlin, compassionate as she is, is not one for easy sentiment.

This is tough stuff she’s going through. She’s still in critical condition.

The lactate levels continue to rise. That indicates there is dead tissue somewhere. They need to find out where. They don’t think it’s coming from the left leg but will have Vascular look at it while they are in the OR.

They are going to make a small incision in her abdomen and visibly check the liver and the bowel. Hopefully they will see something they can remove… in any case, they will leave the incision open and covered for a few days so they can have access to the area and see what’s what. They will also open the chest covering, clean it out, and put another cover on. (Her chest is so swollen they can’t close her up yet; this is common after transplant). They will also do a bronchoscopy (clear out the lungs), as a lot of blood got down there yesterday.

This will happen in a few hours. They are basically going to move her entire “support” system into the OR, so as not to disrupt her as much as possible.

Everyone who worked on this very high-risk surgery has been in awe of Caitlin and how rugged her tiny tiger body has proven to be. But she’s in a quite hellish place right now, I won’t lie. A photo would scare you.

We need to stick with her. We knew it would be a very rough road, post-transplant, and it certainly is proving to be. But a successful outcome is the prize: Climbing hills in San Francisco with Jess, hiking in Maine with Andrew, traveling freely with her mostly companion (me) again.

I’ll send out a post when she goes into the OR. The incision is simple, but how much time in there will depend, of course, on what they find.

–The team

DECEMBER 19–Update from the Trenches

Caitlin has new working lungs, but the rest of her is struggling, and she needs all the energetic help she can get, along with everything her incredible doctors are giving her.

1. Her liver is still in tough shape, but the numbers were slightly better this morning.

2. She’s producing a lot of lactate, which generally indicates lack of tissue oxygenation, but they are not sure from where. We need to get that number down, and ensure adequate tissue oxygenation.

3. On ECMO, a patient’s pulses are checked constantly. They’ve lost detection of a pulse in her left leg/foot, which is her non-ECMO leg, but it is too risky to bring her back to the OR to try and figure out what is happening here.

Normally, transplant patients are forced out of bed, even in pain, right away, to get them moving, but that’s impossible right now. We have to take it one hour at a time.

That’s our update. We’re so thankful we are on the other side of this battle, but she’s been dropped right back into the trenches, immobile and very beaten up.

–Maryanne, with Nick, Andrew, Jess

DECEMBER 19–3:50am

Caitlin has come out of the OR to her room at the ICU where the team is working to keep her stable. Right now, her biggest problem is her liver. It’s not functioning and needs support. The liver can take a lot of trauma and turn around so we have to hope that’s going to happen here. We can’t have a failing liver, or she will fail.

Her chest is open and covered with a rubber membrane because of the swelling. In a few hours, they will take her back to the OR to clean this area up a bit.

She’s got a lot of swelling and bruising.

So: lungs, heart, kidneys are okay and manageable.

LIVER needs all the help it can get.

DECEMBER 19–3:48am

Her chest is open and covered with a rubber membrane because of the swelling. In a few hours, they will take her back to the OR to clean this area up a bit.

She’s got a lot of swelling and bruising.

So, lungs, heart, kidneys are okay and manageable.

LIVER needs all the help it can get.