Death's opposite

I had carried Mia from the bath to our bed and she was scrambling over the duvet and pillows, propelling herself up the piles of pillows and reaching up the headboard when Mom came up: "I was watching videos of Sasha in the last weeks and she looked so sad. She looked confused; she was not happy." Through my tears, Sasha's little sister purposefully and happily stroked Cat and purred herself.

25 years today, a small plane crashed in the Andes. After two months, two of the survivors set out on a final effort to get help. Walking in jeans and sneakers, one of the party recalled the moment he crested a 17,000 foot peak, expecting to see lush green valleys and instead saw ice and snow as far as the horizon:
"I don't know how long I stood there, staring. A minute. Maybe two. I stood motionless until I felt a burning pressure in my lungs, and realized I had forgotten to breathe. I cursed God and raged at the mountains. The truth was before me: For all my striving, all my hopes, all my whispered promises to myself and my father, it would end like this. We would all die in these mountains. We would sink beneath the snow, and ancient silence would fall over us, and our loved ones would never know how hard we had struggled to return to them. In that moment, all my dreams, assumptions and expectations of life evaporated into the thin Andean air. My love for my father swelled in my heart and I realized that, despite the hopelessness of my situation, the memory of him filled me with joy. It staggered me. The mountains, for all their power, were not stronger than my attachment to my father. They could not crush my ability to love. I felt a moment of calmness and clarity, and in that clarity of mind I discovered a simple, astounding secret: Death has an opposite, but the opposite is not mere living. It is not courage or faith or human will. The opposite of death is love. How had I missed that? How does anyone miss that? Only love can turn mere life into a miracle and draw precious meaning from suffering and fear. For a brief, magical moment, all my fears lifted and I knew that I would not let death control me. I would walk through the godforsaken country that separated me from my home with love and hope in my heart. I would walk until I had walked all the life out of me, and when I fell, I would die that much closer to my father."

"Thoughts About the True Miracle in the Andes", Cynthia Boaz, t r u t h o u t, quoting Nando Parrado from "Miracle in the Andes", 2006

I let Parrado's words hang around a bit. The opposite of death is not life, it is love. I have struggled over the last year to understand how we came to the point where Sasha was living and dying, where the two were no longer opposites. We have struggled with our own dim awareness that Sasha was dying, telling CCU that we needed to know that. As if we didn't know it in our heart. There is another old saying: love is blind. Love first lead us to push aside this awareness Sasha was dying, then love lead us to bring Sasha home to die. And now, all we have left of those two tumulteous years is love. Love for Sasha, love for those who cared for Sasha and love for those who travel Sasha's path.

TRAC-PG palliative and grief research

On September 24th we reported to a TRAC-PG retreat on the website's progress - I love how such detailed and lengthy interdisciplinary meetings are called "retreats". In the time since we knew Sasha was dying, the palliative service at SickKids have given generously of their time. Laura Beaune heads up palliative research efforts and has been our website contact person. With Andrea Wheat, Laura has faciliated and guided our journey in Sasha's memory to help support families and Interprofessional Practise. The first website formulation included a public and member site for TRAC-PG, blog for families and private discussion boards for patients, families and their care team. The discussion board idea is of great interest, a place where parents can record daily events whether at hospital or in the community with input from all disciplines (on a non-emergency basis). When SickKids IT staff shared their plans to offer family blogging tools (SickKids Care Pages have now been launched) and was overhauling their entire web CMS to allow parent recording we put the blog and forum on hold. After almost a year of planning, we are eager to move onto the design and then the build phases for a TRAC-PG website that describes the full range of projects with Member areas and Comment feedback and attention to resources for Patients and Families, Clinicians and Volunteers and Policymakers and Researchers.

And what is TRAC-PG you might ask? Team for Research with Adolescents and Children in Palliation and Grief (TRAC-PG) comprises interdisciplinary clinicians and clinical researchers from hospitals, academic and community settings focused on evidence based paediatric palliative care research. TRAC-PG emerged from a research interest group within SickKids Research Institute’s Child Health Evaluative Sciences (CHES) in 2003 by Dr. Beverley Antle (read more about this Canadian inspiration behind palliative and family-centred research), Dr. Maru Barrera and Laura Beaune to collaborate and develop a cohesive program of psychosocially based research to further understand the living, dying and bereavement experience of children with life threatening illnesses and their families. TRAC-PG aims to generate new knowledge and integrate evidence based, family-centred palliative care across the health care systems. TRAC-PG's research focus aims to provide real data to support the call for expanded palliative services as research is vital to impliment initiatives in a healthcare setting. It is simply not enough to have anecdotal evidence that normalizing palliative and bereavement services is good for patients and families. In supporting the growth of paediatric palliative care programs I really could not have chosen a more vital and impactful group to volunteer with; it also warms my heart that among the dozen professionals at the meeting, five cared for Sasha directly.

Alagille Syndrome diagnostic, IPP and family communication challenges: the view of Sasha's GI clinician

Pamela and I met with Dr Simon Ling, Sasha’s GI clinical lead. The meeting was a long time coming as we were conflicted by the role of the GI service in the management of Sasha's Alagille. When Sasha vomited blood in the summer about six months before her second cardiac surgery it was attributed to a 'posterior nosebleed gone awry'. There was mention of a possibility it indicated bleeding varices and early or developing portal hypertension but this was not investigated. An investigation would have required endoscopy (defined as a minimally invasive scope that requires some degree of sedation and entails some risk of perforation). Recognizing developing portal hypertension could have been a flag to reassess the advisability and risk of a second palliative cardiac surgery. One of Dr Ling's primary areas of interest is in the early diagnosis of portal hypertension.

Dr Ling is a clinical specialist rather than research specialist however he provided by way of overview that there exists a large data set for adult liver decease but a much smaller data set for children and very little for Alagille kids with serious cardiac defects. He sees the discipline as having tried to apply the adult approach to see if similar but he suggested it appears adult treatment outcomes are not similar with 1-2 year olds.

As mentioned, one of his personal interests is in the early diagnosis of varices and portal hypertension, improving non-invasive measures beyond ultra sound and blood work to help clinicians with this diagnosis and then treating paediatric portal hypertension to prevent the bleeding. The issue among doctors, as he sees it, is: "Why do we look at varices if we cannot treat them." The clinic is creating a simple questionaire to ask patients if they wish to have an endoscopy to confirm varices, considering the risks. Retrospectively Dr Ling confirms that with her liver, “Things were a lot worse than we thought it was with Sasha.” As for family centred care and interprofessional practise: “I am interested in how we manage care across multiple teams. The issue of inconsistent communication comes up with surprising regularity.”

For Dr Ling, Sasha was unique. He was dealing with probabilities and didn't see definite indications the liver was struggling. Even if varices were present, and speaking to whether this was a flag to halt the surgery, he confirmed the liver can tolerate heart surgery with varices. With Sasha, he sees care as getting into a cycle: if we do this step, it solves this problem, then there is another and that becomes the horizon and so on. Especially with multiple care teams and complex issues, "It becomes difficult to step back and reassess."

We left the conversation with Dr Ling with several followup opportunities: his connecting with Bonnie and Margaret about the family story underway as part of interprofessional and family centred care education; us all thinking about research opportunities (which could be in the $55,000 dollar range); and consideration for expanded normalization of the palliative conversation from small bowel cases (referred automatically to palliative care) to multiple organ cases like Sasha.

Sasha's life in the words of Jimmy Cliff

Come into my life, oh baby, Come in today ... come in to stay, Come into my life, oh baby.

I've got a hard road to travel and a rough rough way to go.

I can see clearly now the rain is gone, I can see all obstacles in my way, Here is that rainbow I've been praying for, It's gonna be a bright bright bright bright sun shiny day.

Many rivers to cross, But I can`t seem to find my way over, Wandering I am lost as I travel along.

Sitting here in Limbo, Waiting for the tide to turn.

Well, they tell me of a pie up in the sky, Waiting for me when I die, But between the day you're born and when you die, They never seem to hear even your cry.

Yesterday I got a letter from my friend ... and this is what he had to say: 'tell all my friends
that I'll be coming home soon, my time will be up some time in June'

Words by Jimmy Cliff

Sasha died in June 2006, she was precious but we didnt know how precious and just when we thought she was thriving she was struggling and then fell into the dark maws of complicated surgical complications. And we sat in limbo waiting for the tide to turn and her return home was a triumph. We miss you sweet peach.

Permission to be happy

The other night we were remembering our sweet peach and talking of the one arriving soon and it felt like a painful dejavu. Sasha was dying at 2 as Mia approached; Mia is an exuberant 14 month as her sister (we think) arrives. Mia's pregnancy during our time at SickKids is lost in the mist while this little one proclaims her presence early with lots of turns and heart burn.

On this 14 month anniversary of Sasha's death we are grateful for the opportunity extended by Margaret Keatings and Bonnie Fleming-Carroll for Sasha's fund to participate in SicKids Hospital's first Interprofessional Care week later in November. The plan is to collect stories on multi-disciplinary, interprofessional and family centred care. More details to follow.

Sweet Peach, even as we remember you with tears and smiles, Mia gives us permission to be happy (as Kari Murphy put it so well). We think of you every day, here is a little song for you we have been playing recently. "Well the first days are the hardest days, dont you worry any more, cause when life looks like easy street, there is danger at your door. Think this through with me, let me know your mind, Wo, oh, what I want to know, is are you kind? ... You know all the rules by now and the fire from the ice. Will you come with me? Wont you come with me? Wo, oh, what I want to know, will you come with me? It's the same story the crow told me; its the only one he knows. Like the morning sun you come and like the wind you go. Aint no time to hate, barely time to wait, Wo, oh, what I want to know, where does the time go? Come hear uncle johns band playing to the tide, Come with me, or go alone, he's come to take his children home." "Uncle John's Band", Grateful Dead

So many things make us think of you sweet peach

A PBS movie on Emma Goldman and her incredible courage and idealism and struggle for freedom, contrasted with her lonely last years in exile as she lost her closest comrade Alex (Sasha) Berkman. Anyone who has lost a loved one can surely relate to her call beyond the silence after such passion and turbulence. ACTOR READS Voice of Emma Goldman: My dear, whom else should I write on this day but you. Only there was nothing to tell. I keep thinking what a long time to live. For whom? For what? But there is no answer. One thing, I can still find relief in housework and cooking. Let me hear from you, how you are Sasha dear. Affectionately, Emma. P.S. Do you want me to send you the Manchester Guardian and the Times Literary Supplement? Let me know. E" NARRATOR: He never got her letter. In the middle of the night on June 28, 1936, Goldman received a telephone call from Nice imploring her to "come at once." Arriving in Sasha's apartment, Goldman learned that he had shot himself in the chest. He died that night. BARRY PATEMAN: This great centerforce of her life is gone. I think it must have been in her life the most devastating personal loss she ever had. I don't think that, I know that. NARRATOR: Two months after Berkman's death, friends came to see Goldman in St. Tropez. They found her distraught, even, they thought, on the verge of a nervous breakdown. One friend saw her walking alone in the garden at Bon Esprit, calling out softly, "Sasha, where are you?" Full transcript

"...Further on up the road, Where the way dark and the night is cold, One sunny mornin' we'll rise I know, And I'll meet you further on up the road. Now I been out in the desert, just doin' my time, Searchin' through the dust, lookin' for a sign, If there's a light up ahead well brother I don't know, But I got this fever burnin' in my soul. So let's take the good times as they go And I'll meet you further on up the road." "Further On Up The Road", Jonny Cash, American V: A Hundred Highways

"...Twas in the darkest depths of mordor, I met a girl so fair, But gollum, and the evil one crept up And slipped away with her. Aint nothing I can do, no. Ramble on, And nows the time, the time is now, To sing my song. I'm goin round the world, I got to find my girl, on my way. I've been this way ten years to the day, ramble on, Gotta find the queen of all my dreams. Gonna ramble on, sing my song. Gotta keep-a-searchin for my baby...Gonna work my way, round the world. I cant stop this feelin in my heart, Gotta keep searchin for my baby, I cant find my bluebird! I'd listen to my bluebird sing but I cant find my blue bird." "Ramble On", Led Zeppelin 2. Robert Plant lost his son Karac at age 7 to an intestinal infection.

Sasha's more familiar absence

Sasha's absence has become a part of our ever unfolding present, no longer unfamiliar. Time dulls grief's raw edge of regret. Daily re-membering of cherished moments lets past pain have its place as her soul's journey inspires awareness and generosity toward other families experiencing end of life and the wonderful care givers who help them. I love you Sasha and am thankful for the short time we had together.I imagine your smile as we get ready for your sister's first birthday party tomorrow. I so wish you were here and you are here in all our hearts.