Working with Faye Librach of the Unicorn Dream Dinner Committee, we have launched a new editable website for the Unicorn Dream Dinner fund raiser for Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care. We put several great pictures of other families and the Max and Bea camp but they had to be taken down until permission was confirmed as permission for one venue does not automatically allow other uses. SickKids is similarly careful with getting permission for every photo.
The Max and Beatrice Wolfe Centre is entirely funded through the support of their donors and the 2007 Unicorn Dream Dinner raised $167,000 to help Max and Bea expand programs and add key staff. Last year the staff held a camp at Riverdale Farm and also a very special one day camp in the Unicorn Room for a family of 5 children (aged 6-13) whose mother died last January. In June there was a Father's Day Ceremony for families who had lost a father, in preparation for father's day. And the Max and Bea is now providing death and grief education to Toronto schools. The Centre will also be involved throughout the year in developing specialized training modules adapting the EPEC Project for children. And two new books have been published, an illustrated novel of six children living with the dying and death of a loved one and a practical handbook of questions and answers by kids, for kids.
Showing posts with label unicorn dream dinner. Show all posts
Showing posts with label unicorn dream dinner. Show all posts
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.
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
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.
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.
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