SickKids CCU Palliative Care workshop

On May 14, we joined Stephen Jenkinson and Dr Christine Newman for a 45 minute discussion with SickKids ICU fellows on the topic of doctors communicating with parents about death and dying. The description of the event included: talking about death to families, good and bad death experiences, spiritual and cultural influences, impact on the caregivers. I gave a short recap of Sasha's difficult CCU journey and some communication challenges we perceived with the full focus of our questions often bearing down on the nurses at the bedside. Mom shared with CCU that she wished there had been an up front discussion that Sasha was dying and that Palliative Care was brought in earlier. We both spoke of the importance of planning a good death during end of life discussions as some parent's final and appropriate focus on quality of life for a terminally ill child.

The session was filmed by Tim Wilson for a documentary on paediatric palliative care and Stephen Jenkinson's insights into living our dying. The previous day Tim visited our house and filmed us talking about Sasha's journey through SickKids and then our return home to die.

We thank Dr Scott Simpson for inviting palliative care into SickKids CCU for focused attention and discussion and Dr Peter Cox, ICU clinical director, for supporting our visit.

Sasha's unveiling

The family gathered to celebrate Sasha with Rabbi Arthur Bielfeld generously continuing his support to our family after 27 years. Granny, Dad and Mom spoke briefly after the cotton was pulled away from the pink granite so we could see Sasha's tombstone on her grave for the first time. It was a small and intimate knot of people around the grave and we were so happy to be joined by the warmth and presence of Rabbi Deborah Landsberg, Temple Emanu-El's current rabbi.

The service began with a beautiful guitar and vocal rendering of I Can Change The World With My Own Two Hands by Treasa Levasseur and Brendan Wall. I'd wanted to dance with Sasha to their music and was deeply moved that they would come to play at Sasha's grave in exchange for a donation to SickKids hospital. How amazing is that? Treasa and Brendan play a range of instruments for different bands and events all throughout Toronto. I typically see them together with Bill Stahl in Little Jimmy's Chicken Pickers. Treasa also plays with Coren Raymond in the outstanding Sundowners who offer soulful original and cover versions of folk with a country twang at The Cameron House every Thursday.

These pictures were taken on a later visit, we will upload the video of the service and Treasa and Brendan's beautiful singing and playing soon.

With My Own Two Hands:

I can change the world
With my own two hands
Make a better place
With my own two hands
Make a kinder place
With my own two hands
With my own
With my own two hands
I can make peace on earth
With my own two hands
I can clean up the earth
With my own two hands
I can reach out to you
With my own two hands
With my own
With my own two hands

Im gonna make it a brighter place
Im gonna make it a safer place
Im gonna help the human race
With my own
With my own two hands

I can hold you
With my own two hands
I can comfort you
With my own two hands
But you got to use
Use your own two hands
Use your own
Use your own two hands

With our own
With our own two hands
With my own
With my own two hands

A Unicorn Dream Dinner magical evening for paediatric palliative care

Almost 400 people gathered two nights ago at Spirale Banquet Hall to raise money for paediatric palliative care. We sat with my parents, several of Sasha's SickKids caregivers, the family we recently met who lost their beautiful boy and Steve Jenkinson, one of Max and B's directors.

There was a huge silent auction of paintings, holidays, sports events and donated services and memorabilia. The Max and Beatrice Wolfe Centre information booth had draft copies of an exciting new book where kids speak to other kids about children dying. There were several game booths including the Putting Green. With the loot bags stuffed with donated product, the open bars and organic watermelon candy scattered around the beautiful flower arrangements on each table there was an almost carnival atmosphere as long time fund raisers chatted with the care workers working the room. The number of donations and the enthusiasm of the bids was amazing.

The evening began with Robyn Posen Young, founder of the Unicorn Dream Dinner, talking about her daughter Samantha's dream and how happy she was the dinner is now in her 5th year. Larry Liebrach, director of the Temmy Latner Centre, spoke about the importance of the work and Ceilidh Russell Eaton, a Max and Beatrice Wolfe Centre counciller, discussed paediatric palliative care and the need to speak openly about death and dying in hospitals and with kids.

The evening went quickly with good banquet food, talks with Steve about his palliative care workshops planned in an Intensive Care Unit and the potential power of an NFB film on his and the Centre's work. He looked over at the klezmer players getting set up and noted that the guy with the glasses was Harry Wolfe, son of Max and Beatrice, and the founder with the family of the fund that began Max and Beatrice Wolfe Centre. He looked trim in his pink shirt and then strode purposefully to the mike and engaged us with a detailed history of klezmer, including the bit about how some of the dances were actually to entertain eastern european royalty by poking fun at Jews. Entertainers through the centures know that self-effacement works.

I went for a walk and bumped into Russell Goldman, Sasha's Max and B doctor at home, and we shared stories and bought a jewelry box for $25 in which lay a simple black plastic necklace with a number for the draw for diamond earings. Then it was in for our 3 minute keynote address before the auction. We had spoken about this chat for months and Mom helped the committee. What would we say, who would say what, could we really say that, did we talk about Sasha's symptoms or the blood that we had to collect in dixie cups? In the end, Mom asked me to speak but stayed close by, close enough to keep her hand on my tuchus, which was good because when I was finished I spun around and almost fell off the podium.

Several people came up afterward to say hi and this was the most special part of the evening including the parents of David Bloom who told me of their son dying at home at 18 surrounded by his friends; their walk in Brampton has raised hundreds of thousands of dollars for brain tumour research. Unbelievable. So the sorbet was served and the auction geared up, starting with the draw for the earings and the MC paused and paused and I focused on my number 55 and the MC said the winner of the earings was 55. We have never won a prize in our lives. Mom was shocked as I casually handed her the little cardboard jewelry box and she stared at me and opened it and somewhat giddily walked up to the podium to a few whispers of 'inside job?'.

I then escaped for some fresh air and had a long chat with Harriet whose 20 year old daughter has lost her colon to colitis and is wasting away. They have spent years going to SickKids for surgery and followup and advice and the emotion doesn't need any encouragement to bubble over. These moms and dads have seen it all, incredible care, mixed in with mistakes and moments of insensitivity as you would expect are inevitable over thousands of encounters.

After most of the lovely folks had left, Robyn Posen Young sat down, having traded her high heels for trainers. Turns out we both went to York Mills Collegiate. Without any drama, and a certain tiredness in the telling, Robyn shared some of the worst moments of her life as Samantha went through test after test and session after session of chemo. These were the days when one nurse, Maria Rugg, single handedly offered palliative care counselling to the entire hospital and struggled with the lack of referrals to palliative care by kids who were dying.

It was a heartfelt evening. We could see that in a few short years a world wide movement has grown to offer every option and choice to those who are dying and to support parents and kids who wish to end the interventions and end their lives with their families and friends at home. And, most importantly, to ask for these services in all the hospitals where there are almost endless opportunities for intervention.

It was a magical evening. Mom told me over dinner tonight that all through our keynote the AV equipment had been acting up and flashing Heather Rivlin's picture of the three of us. The nurses found it a little ghostlike. Then as I looked up to make sure the picture was there and thanked the Centre for making this picture possible, at that moment the photo resolved and hung on.

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 2nd 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.

Photo by Heather Rivlin for Now I Lay Me Down To SleepThe 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

Sasha loved to bath, Saturday, April 16, 2005, 6:53 PMI 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.

Sasha in the bath with Mom, Saturday, April 23, 2005, 3:33 PMWayside/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