Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care at Mount Sinai Hospital: Coming Home

Thanks to the committee of the Unicorn Dream Dinner for organizing this fundraiser and for asking us to share Sasha's story of coming home with the Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care at Mount Sinai. We are honoured to be here with you and to share this evening with some of our SickKids care team, cardiologistDr Jennifer Russell, Riley and Tessie two of Sasha's many cardiac nurses and Maria Rugg of SickKids Palliative Care. Max and B's ability to help SickKids Hospital's patients is an important new palliative care collaboration.

Our happiest days were the births of our two daughters. Mia was born June of last year. Sasha, our first, was born 2 years earlier and she passed away the day before Mia’s birth.

Shortly after Sasha’s birth, we discovered she had a serious congenital heart defect and Alagille Syndrome, a rare liver disease. Cardiologist Dr. Jennifer Russell organized the Heart Centre surgical plan consisting of multiple interventions with the understanding that our top priority was Sasha’s quality of life. At age 18 months Sasha was thriving and all was going as planned, however she then suffered severe complications after her 2^nd surgery in December 2005.

To date, this period after Sasha’s surgery was the most difficult time of our lives as we saw Sasha go through intervention after intervention and our criteria for quality of life kept dropping.

We basically moved into the hospital but as the weeks turned to months we knew we couldn’t take up permanent residency at Sick Kids and what kind of a life was this for Sasha. She was now dependent on nutrition through an IV and almost daily blood transfusions. We couldn’t help Sasha get better and we felt responsible for putting her through this. We knew that she was dying but hoped that she would get better.

At this point, after 5 months in the hospital, we were exhausted and we needed an intervention.

A friend gave Pam Larry Liebrach’s and Stephen Jenkinson's phone numbers and after speaking with Stephen over the phone, we walked across the street to the Temmy Latner Center and spoke to Steve for a long time. He challenged us and asked the questions we didn’t want to ask. We spoke about Sasha’s death and we knew she wanted to take Sasha home the second we left Steve’s office.

We wanted her to see her house, her dog, her toys – we were ready to organize everything necessary so that she had a peaceful death at home. We finally felt, as we considered the ending of her life, that the quality of her life was again the priority.

The Dr Jay Foundation, one of Temmy Latner’s sponsors, has a motto that really sums up perfectly what we wanted to do: to add life to a child’s time, not just time to a child’s life. We thought that Sasha would only live a few days.

Every step of the way home was special, seeing her smile when she saw the car for the first time in 5 months, watching her in the car seat, looking out the window, humming to herself, seeing her eyes widen as we walked up the stairs to her dog and cat and toys and then walk through all the rooms in the house. It really was quite a moment.

That first day Toronto CCAC came over to orient us. Sasha had many IVs to configure. The nurses were cheery and also very respectful of our wishes and they worked with us over time to lessen their visits and let Pamela take over the nursing duties.

Going to sleep with Sasha in our own bed that first night was an incredible milestone for us. We played and sang songs together. We awoke with the sun and birds chirping and then Pamela coming in to reset the IV.

Sasha was happier and more comfortable and her bleeding just stopped. Steve and Russell came over to speak with the family and we told them that Sasha was no longer bleeding, what do we do. Well we go on living. When Sasha’s paediatrician Dr Peer came to check on her we had completed a full circle, Sasha was back with her community doctor.

We had worried that Sasha was becoming institutionalized and would forget our life before the operation. That feeling started to melt away. There were no more rounds, no vitals, no intercoms. We walked the neighbourhood, went out in the car, family came over every day and Sasha celebrated her second birthday at home. It was very bitter sweet. She was tired and we knew we had very little time left together.

I could speak all night about how special it was that we could choose to come home with Temmy Latner but will end with a few thoughts.

After experiencing very high standards of care at the Heart Centre, The Temmy Latner Centre picked up the support role without dropping a beat. Dr Russell Goldman and the TCAC nurses were incredibly positive and gave us as much space as we needed while always being available when we had little panic attacks.

The hospital gave us a life with Sasha, The Temmy Latner Centre helped us give her a good death at home. The words “good death” must seem strange. But if we all strove to give her a good life, why would we want anything different for her death? In Nov, the Temmy Latner centre organized a Ceremony of Remembering for a number of bereaved families and it was without any exaggeration the most powerful and beautiful memorial we have ever participated in as we built a small house in which to put memories of our deceased.

The medical system struggles to find the right moment or person to bring in palliative care however parents don’t know they need guidance on facing death. We are a good example, we pushed palliative care away. I say this because the person who intervened for us wasn’t a doctor or a nurse. He had never seen Sasha before. He had never met us before. He simply asked us what we wanted and when we drifted into dreams of cures he quietly challenged us: was that going to happen? No. Steve Jenkinson had no relationship with us but he gave us that space to face Sasha’s death.

The Temmy Latner Children's program is working with the Hospital for Sick Children to give families the option of allowing their child to die at home. Sasha was one of the first such children.

This picture behind us was taken by heather rivlin on the first morning home as part of her voluntary work for Now I Lay Me Down to Sleep. We thank the Temmy Latner Centre for making this picture possible and we thank all of you tonight for your generous donations to continue Samantha’s unicorn dream.

Paediatric palliative care needs touch the Jewish comunity

MC Harvey Atkins started the evening with a joke: "The Italian says, I am tired and thirsty. I must have wine" and so on for the Scot and the Russian and the Pole etc. "The Jew says, I am tired and thirsty. I must have diabetes." Lots of laughter, some awkward laughter and a few started looks. And there was lots more such hamishe humour since Harvey knew his crowd, the family who setup the Max and Beatrice Centre, director Larry Liebrach, Ujavascript:void(0)
Save as Draftnicorn Dream Dinner Robyn Posen, all the women on the organizing committee. The Jewish community has rallied generously in support of paediatric palliative care. I allowed myself a moment of pride, put aside my internationst tendencies and chalked one up for the struggle for freedom and justice and enlightenment.Those touched by Sasha's story may wish to ponder the meaning of the death of five month old Khaled Fakih, a little blue baby who recently died at a checkpoint. The only difference between Sasha and Khaled and his desperate parents and us is that Sasha was born in Toronto and Khaled was born in Ramallah under Israeli occupation. The Palestinian nation is on life support, walled in, open sewage in streets, children malnourished, hope and dreams dying.

For those who care about peace and positive initiatives, please join me at The United Jewish People's Order on Thursday May 10th at 7.30 pm to hear Robert Massoud of Zatoun speak about his not for profit organization supporting Palestinian farmers to support themselves by buying their West Bank olive oil. Zatoun supports fair trade organic farming, replants olive trees, supports Project Hope and the Palestine Fair Trade Association and imports olive oil soap from a collective using fair trade practices in the Roman Catholic parish of Taybeh (located on a hilltop between Jerusalem and Jericho). Zatoun offers an inspiring local success story consistent with the words on Sasha's tombstone: we can change the world with our own two hands.

Back in Time

I struggle with Mom's request to not be so public, while I am helped by parent blogs who share the wonder of their beautiful child and the pain of their loss. Kevin Christopher McLane's Mom's blog is such a detailed, honest, raw and helpful diary for all of us going through these highs and lows. The swirl of conflicting emotions and that big painful hole in our lives leaves me unable to articulate exactly where I am, so I take refuge with song fragments and melodies.




Wayside/Back In Time captures a different set and setting, a lover's lament on the road to Nashville, but the refrain captures it all, "I wanna go back when you were mine".

"Wasted on the wayside, wasted on the way
If I don’t go tomorrow, you know I’m gone today

Back babe, back in time
I wanna go back when you were mine
Back babe, back in time
I wanna go back when you were mine

Black highway all night ride
Watching the times fall away to the side
Clear channel way down low
Is comin’ in loud and my mind let go
...

Hard weather, drivin’ slow
Buggies and the hats in town for the show
Oh darlin, the songs they played
All I got left of lovin’ me

Back babe, back in time
I wanna go back when you were mine
Back babe, back in time
I wanna go back when you were mine"

Gillian Welch, Soul Journey, 2003 full song lyrics

Remembering Rotem: parents write about the ICU experience and their grief

I was moved by an article describing the life and death of Rotem Engel, the public internet updates by his parents Dana and Oded and the internet circle that supported them as their young son struggled to live and then died in ICU. They do not know what caused his symptoms but they moved mountains to bring him up to age 6 and loved and cared for him fiercely. They poured their heart out on the internet as he was in CCU, relating how they begged their son whose organs were failing to not give up, the father's lament that he failed his son, questions as to did they do enough. I could feel again that sickening wait between endless tests to see if a failing organ will rebound and your child survive - without even knowing what comes next. The article ends with discussion of public grief writing and support on the internet and touches on sibling loss and grief work with a detailed look at how intensive the ICU experience can be if the parents wish doctors to provide every support available. Collective Coping is a painful, inspiring snapshot of the brave struggle of one medically fragile child and the love and support of his parents and the support of strangers in an Israeli internet forum.

The toughest question of all: Marshall Ward writes about Max and Beatrice Centre for Children's Grief and Palliatve Care

Reprinted from original in Waterloo Chronicle by Marshall Ward, April 25, 2007

"No matter how big or small, how weak or strong -- everything dies. We experience the sun and the moon, the wind and the rain. We learn to dance and laugh. Then we die."

- from the book The Fall of Freddie the Leaf

by Leo Buscaglia

My four-year-old daughter recently asked me what it means when people die.

Unprepared for the question, I felt the need to protect her and told her we would talk about it another time. Fortunately for me, Wilfrid Laurier University's faculty of social work provided a free public seminar last week on talking to children about death and dying.

The speaker was Ceilidh Eaton Russell, a councillor at the Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care.

Russell said most parents don't think about explaining death to their children until a relative dies.

"We prefer not to talk about it until we have to," said Russell. "Lots of caring people do the wrong thing for all the right reasons, and many parents don't want to expose their children to death and dying."

Russell said children do not need protection; they need competent guidance and honest answers to their questions about life and death.

"Children ask questions in a very direct way," said Russell. "Seizing the moment is important, and the best time to talk about the subject is when they want to."

In the seminar, I learned that if a child has been protected against sorrow, they will still react when they realize what has happened. Nobody can avoid grief; you can only postpone it.

Often, trying to protect a child will only cause them unnecessary anxiety and perhaps even guilt.

Children less than eight years of age are often interested in death and have complex concepts about it, but are not able to grasp its finality.

When telling a child that someone has died, make sure the word "died" is used, said Russell, using clear and concrete language.

"Children do not understand euphemisms," said Russell. "(Euphemisms) may help an adult feel better but they won't help a child understand what has happened. Avoid using 'sleep' -- kids worry that anyone could go to sleep and never wake up. "Also (avoid): 'We lost him' -- kids wonder where the person is and why they aren't looking for him.

"And 'passed away' is too vague for kids to make sense of."

Russell also stressed that when parents don't have an answer to a child's question, they should say so. It's OK for children to know that there are questions that adults, and even doctors, don't have answers to.

Listening carefully when a child asks a question is important, and it's helpful to understand what they know so far. Russell said kids are good at learning words and how to use them without always knowing their meaning.

"If a child asks, 'Am I going to die?' tell them that they will someday," explained Russell. "And if they ask whether a parent is going to die, they should be told that all people die eventually, while reassuring them that they will always be loved and taken care of."

I was especially touched by a story Russell told about a little girl who lost her father in a car accident. He taught her how to draw, and her mother often told her that if she keeps practising, she will always share an energy with him -- and that, in a way, her daddy is still teaching her.

Curious to know how questions about death and dying are approached at school, I asked my daughter's junior-kindergarten teacher. She lent me the book, The Fall of Freddie the Leaf.

In the book, Freddie and his companion leaves change with the passing seasons, finally falling to the ground with a winter's snow. With striking photographs, it's an inspiring and simple story illustrating the delicate balance between life and death.

At the end of her seminar, Russell shared a few books as well, with titles like Gentle Willow and When Dinosaurs Die.

"Also, sometimes kids aren't always looking for wisdom," Russell concluded. "Just a hug."

Marshall Ward is a visual artist and an independent filmmaker. Email is welcome at mward@wlu.ca.

Alexandra leaving

Suddenly the night has grown colder.
The diety of love preparing to depart.
Alexandra hoisted on his shoulder,
They slip between the sentries of the heart.

It’s not a trick, your senses all deceiving,
A fitful dream, the morning will exhaust –
Say goodbye to Alexandra leaving.
Then say goodbye to Alexandra lost.

Even though she sleeps upon your satin;
Even though she wakes you with a kiss.
Do not say the moment was imagined;
Do not stoop to strategies like this.

As someone long prepared for this to happen,
Go firmly to the window. Drink it in.
Exquisite music. Alexandra laughing.
Your first commitments tangible again.

And you who had the honor of her evening,
And by the honor had your own restored –
Say goodbye to Alexandra leaving;
Alexandra leaving with her lord.

As someone long prepared for the occasion;
In full command of every plan you wrecked –
Do not choose a coward’s explanation
that hides behind the cause and the effect.

And you who were bewildered by a meaning;
Whose code was broken, hope uncrossed –
Say goodbye to Alexandra leaving.
Then say goodbye to Alexandra lost."

This song resonated so strongly for me the first time I heard it, Sasha being the short form of Alexander. Anthony became the protector of Ceasar, Sasha protected our marriage. We had felt her leaving and loss, we had long prepared but still were full of questions and regrets, we felt tricked by fate, we drank in her presence, we still learn how to say goodbye.

Leonard Cohen, Ten News Songs 2001 (based on The God Abandons Antony, a poem by Constantine P. Cavafy)

Passover at SickKids Hospital and at home

We have celebrated the last two nights with the Steins and the Blumbergs, surrounded by the noises of Sasha's cousins, enjoying Mia's first Passover. Last year we laid out a seder in the Terrace Cafe at SickKids, drawing occasional glances from the hard working med students that frequent the large cafe during the quiet off hours. Sasha was just ok, she wasn't in great spirits, it was getting late. We felt it was important to celebrate passover at the hospital, knowing this would be, like every major milestone, Sasha's second and last. Toward the end of the meal we were joined by two doctors from the General Surgery team. There was a comraderie and spirit that night that I hope to never experience again in its weight and sadness; the talk of leaving bondage and singing Dayenu (Enough) quite symbolic after 4 months at SickKids Hospital and a deepening desire, with many fears, to return home.



Here we are with two of the General Surgery team.



And a flashback to Sasha at her first passover at Kenny, Cindy, Betsy, Sarah and Mandy singing Ma Nishtana and greatly appreciating Sasha's first Passover.



You can hear her little voice on this one as she explores the hagadah. Such a sweet little voice.