Heartfelt thanks to HSC palliative care and Temmy Letner Centre

It was a comfort to see Sasha's bravery and the Hospital for Sick Kids' efforts described in The Toronto Star and in addition to the doctors and nurses and specialists at HSC we do wish to add a very important thank you. We read the article several times with friends the day it was published and right away I wished there had been mention of the palliative care teams who helped us come home and enjoy a very special five weeks with our dying daughter.

Here was our Letter To The Editor, which unfortunately did not get published:

"Thank you for celebrating Sasha Bella's short, eventful life and all the dedicated doctors, nurses and specialists at Sick Kids hospital in "Sasha Bella, 2: Palliative Care Fighter". As the article highlights Sasha's final return home we add our thanks to Sick Kids Palliative Care, The Temmy Latner Centre at Mount Sinai Hospital and the Toronto Community Care Access Network who offered our sweet peach paediatric palliative medical, nursing and psycho-social support at home and helped us learn to nurse Sasha to lessen their interventions. We also thank Heather Rivlin and Now I Lay Me Down To Sleep for a palliative care photo session that continues to help us heal and grieve. In your planned giving, please consider supporting paediatric palliative care professionals to expand comfort to more families facing such unexpected and potentially devastating loss."

The article was titled "Sasha Bella, 2: Palliative care fighter: Babies can also be palliative patients, Fund aims to aid parents and staff" and ends with quotes about the need for more palliative supports for nurses and parents. While the heading emphasizes the fund for Sasha without mentioning the palliative care programs and professionals who support those who are dying and help those who are grieving.

Maria Rugg of Sick Kids Palliative Care had the incredibly difficult task of first discussions with two very tired parents who were absolutely not ready to think of their daughter dying. Maria was the gentle hand opening a very scary door. She supports kids and parents through death and bereavement and educates doctors and nurses on the importance of bringing palliative care considerations to the patient or parent as early as possible to allow for informed decisions about surgical plans and quality of life.

Dr Christine Newman works both at Sick Kids Palliative and the Temmy Latner Palliative Care Centre at Mount Sinai Hospital, the only centre currently caring for children dying at home. Chris worked behind the scenes to get us home after we contacted Dr. Larry Librach.

Stephen Jenkinson, the psycho-social director of the Temmy Letner Centre, met us while Sasha was not under his care and for that we are grateful. Steve lead us to our worst fears and helped us face the fact that Sasha was diminished with each daily blood transfusion. He disabused us of selfish hope and then waded into our grief with us, even as Sasha was alive. Steve connects death and life and grieving as constant life forces and believes that 'hope' can remove you from the present during the last months, weeks or hours of your loved one's time. I wish I listened closer and spent more of her final hours by her side rather than adding material to her website. Tim Wilson's GriefWalker is a striking documentary on Stephen's deep exploration of the grief cycle.

Dr. Russell Goldman, Sasha's physician on the Temmy Latner team, was in the picture from the first palliative care family meeting through to the final visit. He proscribed medicines, guided us as we struggled mentally with the last days and was a gentle and calming presence, accessible through a long weekend as he had precious time with his family and late into the evenings. His were the last doctor's hands to touch Sasha as he removed her PICC line. His smile lifted our spirits.

The nurses of Toronto Community Care Access Network, including Marg, Irena and Soritsa (excuse my spelling) who were scheduled to visit us 2-3 times a day and kindly supported us as we took on more duties so they only had to visit a couple times a week. We appreciate their gentleness and humor and graceful support as we worked to minimize their visits.

Palliative Care and Temmy Latner and Toronto Community Care Access Network might say they just did their jobs but they did it sensitively and positively and immeasurably added to Sasha's quality of life in her final days. Sasha stopped bleeding a day or two after we came home and I am convinced that was because she was happier and that the palliative professionials helped her decide to be with us for an extra precious five weeks outside the hospital.

In the article, Sasha is a "palliative care fighter". She was that but she was first and foremost our very sweet first daughter who we were blessed to know and who taught us to treasure and celebrate life.

There are a couple small mis-statements, completely understandable with such a complex history: Sasha did in fact crawl and then started to walk after much focused work in our home by Lisa, her first occupational therapist. Lisa had returned to Sick Kids while Sasha was living at Sick Kids after her second surgery and then she started to visit Sasha at home after our return a couple times a week after a long day of work at Sick Kids - amazing; and the internal bleeding that lead to Sasha's death was not caused by a paucity of bile ducts (the liver condition common to kids with Alagille Syndrome) but rather suspected portal hypertension and bleeding varices that developed as a result of the damaged liver.

We thank Catherine Dunphy of the Toronto Star for her keen interest in Sasha's life and the family experience of pediatric medicine and palliative and bereavement care.