Labatt Family Heart Centre Annual Retreat

On February 7, 2007, SickKids Foundation announced that Arthur and Sonia Labatt had donated "the largest gift in the history of The Hospital for Sick Children and the largest philanthropic investment in children’s cardiac medicine and research in North America" to expand SickKids Cardiac Program into the Labatt Family Heart Centre. Having lived on 4D with Sasha only 9 months before, I remember our exhiliration at the news and our hope that the investment in technology and staff would be accompanied by expanded psycho-social and family-centred support. We worked with the Heart Centre in 2006 to setup a nurse award for family centred care practise and then spent most of 2007 with the palliative team, TRAC-PG palliative network, the first Sasha walk in June and SickKids family - IPP initiatives.

The retreat was titled "Enhancing Integration and Collaboration" and the afternoon was an inspired reintroduction to a world class team in rapid movement, passionate about patient and family outcomes. A new direction expressed is the desire to ultimately continue care past 18years and into adulthood for best support.

After grabbing a quick sandwich lunch, the 115 (out of about 350) Heart Centre professionals received a year in review by Karen Kinnear standing standing in for Dr Steve Schwartz. The 2007 milestones make for a long list, here are many, but not all.

Labatt Family donation announced. Reinitiate George Brown College's Interprofessional Cardiology Certificate Program. Devise a protocal to allocate a 1/2 million dollars of Innovation Funds yearly. New Heart Centre management structure. Dr Andrew Redington and Dr Glen Van Arsdell reappointed to a second 5 year terms. North America's largest school AED advocasy program (portable Automated External Defibrillators that diagnose and treat cardiac arrest). Cardiac Critical Care where Sasha spent 5 weeks became a distinct intensive care operating unit. A new cath lab (Cardiac Diagnostic and Interventional Unit or CDIU) was built and staffed and over the coming months performed cardiac caths, MRI-caths and fetal cardiac MRIs. The 3rd annual symposium on "The Left Heart". 200th heart transplant. 17 SickKids transplant patients compete at World Transplant Games in Thailand. CCCU Interprofessional Practise Committee initiated and morbidity and performance database established. Renovation of room 53 for Cardiac CCCU. Surgical team visits China. 11th Berlin Heart proceedure. A second round of Innovation Awards. A first ECMO initiated outside and airlifted to SickKids with the patient successfully weaned off ECMO.

As Dr Glenn Van Arsdell joked later, he and Dr Redington may as well retire as its an impossible list to beat. The Heart Centres big mission is "To be the best paediatric and congenital heart desease centre in the world".

Seema Mital reviewed the new Biobank database which will include genome information and aim to improve patient outcomes; over time prior patients will be added. Bernadette Stanton-Meijer, the new Quality Team Leader, ran through the Innovation Fund recipients - 10 million of the 25 million dollar donation was set aside and a 1/2 million dollars will be allocated yearly for research initiatives, including smaller sets that help make the case for expanded funding from outside SickKids. Both Dr Redington and Dr Van Ardell encouraged everyone there to think about submitting a small research proposal to build on the 10 proposals considered each of the last two years.

Then the magic began with three and a half hours breakout discussion, short break and reports that summarized suggestions and identified three to prioritise. I joined the session on QM as it was chaired by Dr Russell and I have to admit I kinda lost the plot. Six questions had been suggested. Three tables and about 25 people went through the first, patient and information flow, records and bumped surgeries. Not realizing that the converation was flowing logically along all care paths I asked about parent contribution to the data flow (daily medicine entry, observations, lists etc) and while I had the floor I asked about some hours of music in CCCU. Dr Van Arsdell asked how this could be the topic of a small research test.

We were only into the second question of six at time. As a group, we chose support of the Parental Presence Program to be a family-centred initiative to prioritize along with recommendations on several key changes in the flow of sign-off and planning between CCCU and 4D.

We ended with the requisite filling out of an evaluation. I stayed awhile to chat with Dr Reddington about adding fields and a login for patient and parent's to contribute to the database. He is excited by the Cardiac Key that allows patients to download their surgical history to a small encrypted USB memory stick for when they travel. Then Dr Helen Holtby, Sasha's anaesthetist on several occassions, caught me up on some of the research on parental presence in the surgery room, that it is likely age dependent: less impactful for the youngest babies, very important for mid range ages and again of varied impact for older children. The Parental Presence Program was advocated for strongly in 2001 and appears supported case by case at the request of a patient or parent as opposed to the anaesthetician always making the option explicitly available. We will followup for confirmation.

It was good to see those we had worked with, outside the hospital: Dr Tilman Humpl, Dr Desmond Boehn from CCCU, Dr Russel and Dr Van Arsdell who were at the centre of SickKids surgical plan, Dr Lee Benson who together with Dr Jin Lee diligently worked on Sasha's tiny blood vessels over 5 catheterizations, occupational therapist Lisa, nutritianist Cat, NP Paula, nurse Jacky formerly in 4D step down now CDIU, NP Linda Fazari who helped craft our Heart Centre award and several others we met for the first time. There was a buzz in the air. Dr Redington made the most use of the microphones, walking up a half dozen times to pose a question or suggest a connection.

Thanks to CCCU Nurse Educator Cecilia Hyslop for the invitation to the retreat and Karen Kinnear, Director, Child Health Service, for the personal welcome as I walked into the slightly intimidating setting. And thanks for all the many references to family perspectives on research, education, practise and future possibilities throughout the afternoon.

Eve Beatrice joins the family

Eve joined us 2am Saturday November 10, she came out in a hurry, so quickly Pamela didnt have time for an epidural. The upside of that is that Mom felt was on her feet the next day and her recovery seemed much faster. Eve latched immediately in the delivery room and is now working her way through night feeds with a vengeance while sleeping most of the day. She is an intense little girl who we hope grows up to look just like Mamma because Mia is the splitting image of Dad.

Mia gives her new sister hugs and kisses but we have to watch her like a hawk as she doesn't know her strength, especially when enthusiastic. Hmmm, how high can I push this swing seat?!

With the loaner of a breast friend and baby swing Eve is in stride and Mom is sleeping more now than she did when in the uncomfortable pregnant times. Mom even let Dad go to SickKids on Monday for IPP day, though that only lasted until lunchtime! So happy to have two little girls with us and our beautiful Sasha's spirit feels so very close.

Interprofessional Week at SickKids

The Sasha Bella Fund was very happy to participate as sponsor of SickKid's first IPP week. About 100 SickKids nurses, doctors and allied care providers signed up for the first full day of activities held at Hollywood Theatre. The day was begun with welcome remarks by Margaret Keatings and then I spoke about Sasha's experiences, beginning with three short videos showing some of Sasha's milestones: thriving and starting to fully walk in December 2005, playing with an IV filter four months into our stay at SickKids and then together at home while Pamela worked on her IV tubes and our sweet peach passing mom the alcohol swabs just two days before she died. My remarks focused on communication challenges and appears below.

David Nicholas provided an overview of the theory and development of the IPP framework and priorities at SickKids hospital ending with examples of new initiatives and sharing dominant themes for parents and families (communicate, collaborate, coordinate) and the child/patient (comfort, respect, communication, choice).

Ivy Oandasan then reviewed wider social frameworks including emerging legal requirements that all care providers take courses in interprofessional education to learn team collaboration skills and a pressing need for 1200 learners to be accomodated yearly by volunteer mentors and coachs and to open up training and preceptorship roles within care settings. IPP education will be woven into medical licensing with the aim that by 2009 all health care graduates across the disciplines will be competent in collaboration. This competency is seen as marking a "fundamental shift" within health care provision nationally in order improve patient outcomes and enhance family-centred care objectives while using scare resources more effectively.

The stage was then taken over by "IPP Live", a theatrical presentation focused on a family meeting when a mom wants to take her daughter home. After the family was acted out, it was repeated with the audience shouting out "stop" so as to intervene and better direct the flow of the meeting.

I had to leave early at this point as Pamela had her hand's full with Mia and our new baby Eve who joined us Saturday morning and is doing just great. During the one short break I had an opportunity to meet Frank Gavin, a dedicated member of the Family Advisory Committee at SickKids Hospital as well as both nurses who had cared for Sasha and nurses excited to talk about their new initiatives. I was thrilled to hear that the Heart Centre is restarting the parent's group meetings!

Poster displays presented on Thursday and Friday will relate new IPP initiatives including:

Physiotherapy Clubfoot Clinic

ACTS (Acute Care Transport Services Team)
The Chronic Pain Program
NF1 (Neorofibramatosis type 1) Team
Decision Tree for Feeding in Paediatric Palliative Care
Rheumatology and Neonatal follow-up clinics
Annual Congenital Hand Program Family Picnic
The Beanstalk Program (6A)
2007 World Transplant Games
The Medical Directives Committee
Newborn screening
Admission Medication Reconciliation
The Good 2 Go Transition Program
Research into cross-cultural patient care in NICU
IPP "Leadership in Action" education workshop
SCOPE (Strategic Career Opportunities for Professional Excellence)
Preceptorship Initiative, Toronto Rehabilitation Institute - IPC Working Group

SickKids Hospital was designated a Best Practise Spotlight Organization candidate by the Registered Nurses Association of Ontario in the spring of 2006.

SickKids IPP efforts are being coordinated by Bonnie Fleming-Carroll and supported by Michele Durrant and Natasha Brownrigg. The Sasha Bella Fund thanks them for their commitment to family-centred care with the inclusion of Sasha's story and for the continuing privelage of being able to give back to SickKids Hospital for the dedicated care provided to our peach.

Parent - care giver communication challenges and successes: one dad's story

Interprofessional Practise week: thoughts from one dad on IPP and family-centred care communication

Jonathan Blumberg
The Sasha Bella Fund for Family-Centred Care

(These remarks are offered a year and a half after Sasha's death in the hope that they help identify IPP and family-centred care needs and help make the care path of families and care givers just a little easier. We have spoken to numerous care providers at SickKids Hospital and deeply value their professionalism and interest. I recognize that many of these challenges are systemic and relate to policies regarding complex care treatments under uniquely challenging intensive care situations and about which there is ongoing discussion. Our intention is only to help. This sharing of our experience more fully also allows us closure on the challenging aspects of our experience so we can move on to fund-raising and helping other kids like Sasha. )

Thanks for coming to help advance IPP at SickKids and thanks to the organizers for including Sasha Bella's story so that we may share successes and challenges that families face day to day. I am not going to speak about Sasha’s condition as this is recorded on an insert in the fact pack and at her website. I would however like you to see the little girl that SickKids added life to (watched 3, 30 second video clips).

I will begin with a truism: parents expect care teams are communicating efficiently. Parents also expect that care is family-centred and that the care team discusses all options with the child or family to allow for the best course of care. This means we need to look beyond the quantity of communication and reflect on the expansiveness of the communication. In Sasha’s case a great deal of discussion focused on the surgical path and only after significant adverse outcomes did we look to involve palliative care and a going home strategy. In short, we were reluctant to consider that Sasha was dying.

With a show of hands, who in the room are nurses. Doctors? OT/PT? Child life? Executive? Palliative care? Foundation? Who here has done a palliative care referral?

Parent stress can make apparent institutional strengths and weaknesses and this creates tensions. It is vital we look to these tensions as a way to understand and improve Interprofessional Practise and Family-Centred Care.

A 2006 report in Pediatrics entitled "Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review" helped validate some of our concerns as being quite widespread in the intensive care setting.

“the most severe parental stress is role alteration…the sense of helplessness
in parents who are accustomed to control in providing safety and advocacy. Other identified stressors include alterations in the child’s appearance, machine
alarm sounds, nursing procedures, and communication difficulties with PICU staff.”

In fact my coping response was to problem solve, ask lots of questions, and advocate for continuous information flow. ICU felt separated from the wards and our familiar supports.

“Most reports of parental stress after emergent PICU admission indicate that early anxiety levels are elevated to near panic. These levels subsequently decline and
stabilize. A positive correlation between the number of invasive procedures and the level of parental anxiety was observed… Parental sensitivity to environmental stimuli in the PICU becomes less acute over time, whereas dimensions such as staff communication and behavior become stronger determinants of parental stress…. Parental needs may change as novel equipment and procedures become more familiar. At some point then, parents focus on the decision-making process including interaction with the hospital staff and learning about the child’s care."

In short, parents will in time view family-staff communication as the gold standard for care.

"Parents reported feeling more stressed by their child’s behavioral and emotional response, but nurses expressed greater concern about staff communication."

We were greatly stressed both about Sasha's appearance under deep sedation and, as I discuss further below, were struck by the difference between family and staff communication in ICU versus the wards like 4D.

One study "reported that stress was positively correlated with higher socioeconomic class. Loss of parental control in relatively advantaged parents may produce
more acute stress-level elevation, but this remains unproven. Another group reported that parents of intubated children were found to be more distressed by painful procedures, as compared with parents of nonintubated children, who were more distressed by the behavioral and emotional responses of their children."

Our experience supports the notions that relatively privelaged parents may tend to demand privelage in time devoted to questions about care and we were certainly more distressed during intubation periods.

"Family-member reactions include anguish, helplessness, and aggravation. If unresolved, such responses may adversely affect the well-being of the entire family. Most pediatric critical care professionals feel an obligation to minimize parental stress and preserve family well-being. Such well-intentioned practice patterns must be based on accurate identification of parental needs."

Our needs first focused on intervention strategies and then switched to reevaluate Sasha's quality of life with an end of life home care plan. It was very difficult for us to make this transition and this effectively only occurred after a heart to heart talk by a palliative care councellor we had not met before who worked outside SickKids.

Here is a listing of ICU and ward challenges and successes followed by some suggestions based on our experiences.

ICU Challenges

- Sasha was dehydrated after the first night in ICU and we heard her nurse was training another nurse
- We had agonizing days feeling her life slipping away, Mom thinks she is dying, doesn’t share that with Dad as he remains hopeful
- Some nurses do not respond well to the number of our questions
- While we wondered why heparin (blood thinner) was continued while Sasha was bleeding and why the surgeon waited to open her up again to try stem the bleeding, we did not ask the cardiac surgeon for answers
- After TPA was introduced to the chest drains to break down clots, Sasha later hemorrages however there is no debrief on this intervention and we spoke about it throughout our stay
- The long wait as her liver fails
- Once being told “you know we are short staffed” during Christmas
- One Dr jokes and is scolded by CCU head for not talking with nurses or making notes
- One Dr responds angrily after we escalate requests for info and says "If you are not happy you know you are welcome to go somewhere else"
- Sasha’s left arm had tremors and flapped however we were told it was very unlikely to have been a sign of stroke (scans later showed Sasha had two strokes but we do not know when they occured)
- Oral care deteriorates, marble sized spitball makes her gag, nurse takes charge
- Bleeds, scopes, cauterizations followed by an exploratory cut that develops a fistula
- No ICU orientation and several weeks until the first family meeting
- A conscious 18 month old very scared when alone in CCU
- Temperature spikes for weeks, dozens of cultures and tests inconclusive, then we see pus in her scar as notice her surgical wound has opened and is infected, once addressed the fevers disappear
- Being moved around in our last two weeks between rooms
- Realising Sasha's little arm is limp and not moving
- Nurses from 4 not fully integrated at the time in ICU computer systems

Positive ICU experiences

- Nurses, doctors, pharmacists, respiratory technicians who showed such care and interest
- Spa day with a wash and shampoo
- Parents helping each other in the CCU waiting room
- Cardiac surgeon saying: "lets stop the bleeding"
- Dr changes a blocked breathing tube successfully
- Dr clears clots from her lung branch
- Drs increasingly include us at rounds
- Dr who makes herself available to us during staff holidays
- CCU head’s quiet check ups
- A new senior Dr meets every patient and family bed by bed
- Dr Russell, Sasha's cardiologist, checks in with us every day
- The quiet and privacy of the isolation room
- A nurses tears as I tell her Sasha's arm is not moving and I think she has had a stroke
- CCU Dr who supports us transitioning up to 4D
- Seeing two children go home whose families we spent a lot of time with in CCU

On the wards

- Sasha's cardiologist supporting our return to 4D gives us privacy and a quieter environment and Sasha starts to wake up, though it takes her a week to smile
- Ostomy bag support for the fistual seems new to 4, we take responsibility for it and the Wound Specialist trains us and visits frequently
- We are pushed to 6 from 4 as Sasha now viewed as a GI problem and not a 4D cardiac problem, on 6 Sasha goes into septic shock
- Could we have gone home in February and Sasha’s second round of bleeds might have held off just long enough for her fistula to close?
- She was extremely frightened when awake for nj tube introduction in IGT, shocking the 4D nurse who accompanies her the second time
- TPN home training doesn’t account for our fatigue and one of the two TPN nurses thinks we cannot learn however we pick it up quickly at home after sleep

One Dad's Suggestions

Debriefs make all the difference. Cardiac acknowledges we waited too long in ICU before trying other management options, the cardiac plan in hindsight was too aggressive for her compromised liver and Sasha was more complex than realized. Cardiac acknowledges that the informal role played by Dr Russell to coordinate all departments should have been formalized. CCU struggles with parent communication that their child is dying and throughout the hospital there is a need for for earlier involvement of palliative care.

We sat by Sasha’s bed from about 9am to 12pm, often coming in at 7 for rounds. By the end of the experience we were changing bloody diapers for an excellent nurse responsible for two or sometimes 3 beds and within days were exhausted. The information flow first to the nurse meant that the full burden of our questions fell on nurses. There was no initial orientation and a later more detailed care plan meeting only happened weeks into the experience when things were clearly in a very bad place. During our stay we did not meet a social worker for ICU (there is a CCCU social worker now) and we would strongly support continued expansion of psycho-social supports. The complexity and number of communications were managed by a large number of individual doctors and nurses which would seem to cause more differential in response to parent than is necessary.

Our looking over the notes by the bedside were met with request to raise questions with nurses. Expect parents will want to read the charts and this shouldn't feel like a surreptitous process.

After 4 weeks, Sasha was exterbated and we completed our core nurse list only to find Sasha moved 3 times in 4 days with 16 new nurses over an 8 day period. Later told CCU doesn’t have core nursing lists as schedules are up to the nurses. We had thought they were ignoring us or were incompetent in comparison to 4.

4 weeks in we didn’t know basic info that would ground our relationship. Was the bleeding left too long? Did the TPA lead to hemorrage? Could the various scoping (respiratory tract, stomach) have been done faster?

Anger management. One Dr reacted angrily, then compensated; another displayed exemplary response when Dad lost his cool

Among the Fellows, big smiles and updates made a big difference. Absences made us feel alienated.

Introductions. Most staff introduce themselves however some didn’t. Dad had male nurses standing beside the nurse speak to him first and foremost.

Conflicts between the parents. Parent worry and fatigue exacerbate tensions that may exist. Dad deferred to Mom when it came to concerns about changing nurses or the information flow. We felt we alienated CCU staff.

Concerned our child was in a perpetual motion machine of medical intervention. We expect doctors are constantly weighing when and how to intervene and when to wait and observe and strategise but this isn't always communicated.

Sounds. I was hypersensitive to the sounds around us as Sasha started to awake. The sound of serated plastic syringe rolls tearing for example. CCU offers stereos and TVs to individual patients. How about soothing or stimulating music like that offered by carefully selected with focus groups.

Debrief and closure and grief. After nurses and doctors spends hundreds of hours intensively caring for a child, an opportunity to fully clear the air is vital to grieving and grief work and giving back to hospital and other kids. We returned to talk with SickKids staff after Sasha's death.

Family meetings: private talks away from the bedside, maybe sit with parents in the CCU waiting room the same way that surgeons meet the parents in the surgical waiting room. (We understand this would be extremely difficult for all talks however I am thinking of critical conversations like the failure of an organ)

It would greatly help that doctors give parents 'permission' to consider that their child is dying.

Create a smiley face chart as an activity for parents: my child's likes cotton, not flannel, she prefers her right side to her left etc.

Add a parent gratitude wall in all ICU centers (actually this is more something for a parent's fund)

Care coordinators: the two week rotations are hard on parents and staff, a dedicated point of contact can create continuity

Rounds: include the parents, ask if there is anything they wish to add at the end, it meant a lot to us when this happened

Nurse changeover: is there a way to not force parents to move from the room during changeover? If this is impossible because the number of patients in one room makes this impossible, is great if the first contact with the nurse allows review of upcoming proceedures and discussion of any parent followup requests

Create parent group meetings to let parents talk together with a trained staff member. There is great camaraderie among parents and when we don’t have clear information or an outlet we try and work it out themselves or via the internet and the hospital misses a chance to engage.

We really appreciated when nurses and doctors kept a focus on Sasha amid the numbers: wakefulness should change the routine, mouth care should be vigilant, phone the parents when they request notifications, be very gentle with a sedated child. Little things are big things. Tone of voice is the key determinant to denote respect and empathy.

Prepare parents: expand the SickKids website sections for surgical candidates that tells kids and parents what to expect and have a short orientation

Expedite web resources that will allow parents to record their care experience to offer a wealth of data to researchers. Parents should not have to scratch notes on the back of an envelope about life or death decisions for their child.

A new doctor can be family centred when asking key questions however a new doctor can easily overwhelm and stress a parent by asking 21 questions rather than consulting the files or collaborating with professionals who know more about the patient.

In conclusion, here are key communication needs we saw

* earlier introduction of palliative care and more straightforward discussion of dying

* formalize the key communicator role in the team for complex or multi-organ surgical plans

* lessen differences between CCCU and wards in terms of family-centred care as in core nursing, inclusion in rounds

* provide parents with web based resources for a diary, calendar and messaging shared by the team

* fund parents meeting in a group with a staff facilitator - this can be framed as new parents orientations etc such as breast feeding workshops offered on the maternity floors of our hospitals

Family-Centred Care at SickKids and reinventing the Family Advisory Committee

Back in February, I came across this wonderful description of family centred care that is both rooted in specifics and suggestive of values to guide us in this journey.

“Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

So much is packed into these sentences to guide the devising of specific practises. The last two sentences both soars with humanity and evokes a deep intimacy: how the parental "love and it's expertise" play out in a new, scary and complicated setting where parents may be inexpert at medicine but know their children best; and that deep wish, felt by every parent who has sat at a child's hospital bedside, "to be always at home", hopefully to go home or, when that is not yet possible, to bring home ideals to the hospital: love, togetherness, safety, peace, growth.

I met Frank at IPP education day. He is thoughtful and supportive and has taken it on himself to learn as much as he can about how hospitals are implimenting advisory family advisory councils as a resource for SickKids.

Which leads to the most exciting news of all. The SickKids family advisory committee is in the process of dissolving itself. Its own work and analysis lead it to conclude that the hospital needs a more integrated involvement of parents and so the council and the hospital are in the process of completely reshaping parental involvement in the hospital.

Walking with Mia, Tim and Sasha's spirit

Tim Wilson met Mia and I at Cedarvale and we hit the swings and slides and then walked into Cedarvale Ravine where he filmed us for a movie on Stephen Jenkinson and palliative care. Sasha's story will be the only paediatric palliative care story in the film for the National Film Board. We walked the path that Pamela and Sasha walked almost every day, Mia loving the little foot bridges, walking across, then back and again. We met some dogs and other walkers and then chatted by the bridge that had been the turn-around point on the first Sasha Bella Walk in June. We talked about the fund-raising walk in June, differences in mine and Pamela's roles and what it meant to come home with Sasha.

You can read about Tim's projects at his website including an intriguing article on a father's tools or view shorts of 17 of his documentaries including the stunning demo short for Grief Walker on the work of Stephen Jenkinson that has been the subject of Tim's interviews with us. Stephen helped us face up to Sasha dying so that we could bring her home - -"Counselor and palliative care worker Stephen Jenkinson takes a radically different approach to the care of the terminally ill. He advises that they 'abandon false hope' and turn instead to grief. 'I teach the art,' he says, 'of being broken-hearted.' Moreover, he insists that each of us has an obligation to die well." Stephen offers the keynote tomorrow afternoon to open the 2007 Canadian Hospice Palliative Care Conference.

Where I was in your final hours

You whimpered when we touched you, so I drew back. It was hard to hear that whimper as anything but discomfort, hard to imagine it was a choked purr. You were not calling us and we were so tired and we took a little respite. You were deeply sedated. And I was building your website. Because I loved you and wanted others to see you. Because I didn't know what else to do. Because I didn't want to look at your beautiful face swollen and yellow, your belly so distended, your failing organs congealing so that blood no longer flowed as it had the last week. Your granny and grampy and bubby spent time with you. We dropped in. So much preparation went into bringing you home but a year and a half later I still think about those last hours and ask what else could I have done beside upload pictures and write your story. That was OK, but not for most of your last day. You died as we sang you a song, as if you had waited and I am grateful I held you when you let out your final breath.

How does the palliative care community approach family preparations for their children and siblings final hours? At the beginning we were taken through all the signposts marking the end of life. Afterward we dressed her and I carried Sasha to the mortuary vehicle. Everything was, it seemed, as respectful and dignified and family-centred as could be under the circumstances. And when I look at a support network sheet on the final end of life information or a sensitive and detailed parent account of living with very sick children there is no mention of what parents do during the death of their child. When the breathing becomes very laboured and a nurse or doctor comes to increase the sedatives, that is a good time, if not before, to touch the parents with the moment if they are lost in grief. So they are there. Not on the computer.

A snapshot of the fundraising needs for paediatric palliative care at one Toronto centre of excellence

The Sasha Bella Fund for Family-Centred Care focuses our efforts on raising funds for SickKids Hospital for family-centred, interprofessional and palliative initiatives to help SickKids nurses, doctors and allied professionals continue to evolve advanced models for family communication. We think this is the best way for us to direct Sasha's experience to support other kids and care teams. We offer a parallel track to the highly successful large scale fund raising for expensive new equipment and research. While our focus is supporting critical 'soft' processes within SickKids Hospital we will forever be grateful for the sensitivity and expertise at The Temmy Latner Centre who, working with SickKids Hospital, organized a multi-disciplinary care team for Sasha in the community so that we could bring her home. Here are figures provided as of September 2007 by Temmy Latner Centre sharing the scope of the fundraising needs. All figures relate to The Max and Beatrice Wolfe Centre for Children’s Grief and Palliative Care.

Number of grief and paediatric palliative care referrals since May 2006: 136
Number of grieving or terminally ill children and their siblings supported since May 2006: 263
Number of community presentations since May 2006: 140
Number of classmates of grieving or terminally ill children seen so far this school year: 350
Number of people who did this work: 6
Number of new dollars needed to hire a counsellor skilled in children’s grief and palliative care: $80,000
Number of new dollars needed to develop and distribute education material: $10,000
Number of new dollars needed to buy equipment for teens to film their stories, for and about their families: $5,000
Number of new dollars needed to buy a years worth of journals and activity books for kids and teens: $2,000
Number of new dollars needed to fund a week long multi-media arts camp for kids and teens in The Unicorn Room: $3,000
The chance to make all of this available to the next child who needs us:

SickKids Interprofessional Practise Week and Sasha

SickKids Hospital will hold their first IPP (Interprofessional Practise) Week from November 12 to November 16 and it is an important milestone for SickKids. The Sasha Bella Fund for Family-Centred Care is proud to help sponsor this initiative. Since 2005, Bonnie Fleming-Carroll and Natasha Brownrigg have been working on SickKids IPP, resulting in concerted effort to discuss, map and address IPP challenges. In January 2006 I picked up a copy of the IPP update and it gave me a good introduction to communication challenges across the hospital and got me thinking about family-team communication. For Bonnie, Sasha was one of the inspirations of IPP week as she wrote to us in an email: "we should dedicate the whole day (Nov. 12th) to Sasha Bella. Sasha Bella and your family's experience is a key reason for the day". As Ron Laxer wrote in the second newsletter reporting on SickKids IPP work: “At the heart of the IPP model is an intent to ease the journey of both patients and families through the care process. We need this kind of model to promote and support the practices of family-centred care.” (see all of SickKids IPP newsletters to date on the right side of this blog - thanks Natasha).

I invite friends of the Sasha Bella Fund to join me at 8am on November 12, 2007 in the Main Auditorium (Hollywood Theatre) to launch the first IPP week at SickKids Hospital. I will offer some thoughts on Sasha's experience and IPP; see also the SickKids IPP week calendar of events. Parents and kids take for granted that everyone on the team is sharing information and coordinating care efficiently however IPP requires ongoing focus and committment. As the document states: "Promoting effective inter-professional collaboration in the delivery of health care in Canada has become a national priority based on evidence that it may contribute to improved teamwork and collaboration, increased job satisfaction, and a reduction in patient morbidity." Effective IPP is also critical to effective Family Centred-Care.

Pediatric Patients Receiving Palliative Care in Canada

A multicenter review of 8 dedicated pediatric palliative care programs in Canada, published in Archives of Pediatric and Adolescent Medicine in June 2007, estimates that nationally "between 5% and 12% of the children who could benefit from palliative care received services" and concludes that "Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs." The review is based on 317 children cared for during 2002 and 2003. Over the last three years, hard work and determined communication have raised these numbers, there are now 4.5 palliative care professionals at SickKids Hospital and referrals are up. We are however still far from normalizing palliative care access to families early in the care of kids with long term or severe health challenges. Thanks to Maria Rugg at SickKids Hospital, one of the study's co-authors, for pointing us to this report.

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.

1 year on - sharing Sasha's story at "The Jay"

Thanks to all who reached out and remembered our peach with us yesterday on the first anniversary; thanks especially for the living green fronds from SickKids Palliative and the beautiful rainbow of cut flowers from Max and B / Temmy Latner Centre.

Monday night, at The Dr Jay Golf Classic, Dad told the story of Sasha's return home to about 288 dinner guests at Lionhead Golf Club and $31,000 was raised at tables immediately afterward for the The Dr Jay Children's Grief Program at The Temmy Latner Centre. Testimonial on making a difference: Dr Jay Children's Grief Program helped Sasha come home
The program estimates the costs for family counseling at $1500. That is one and half bags of TPN (total nutrient) to offer full psycho-social support for the child, parents and siblings. Sasha's picture was on the Dr Jay Golf Classic program front cover, reaching out a finger to touch Mom's lips. Congratulations to the big team of dedicated volunteers who raised several hundred thousand dollars (I will let the Foundation release the staggering amount!).

Out front, the clamatis has five big purple and white flowers this year but at the far back yard wall a single blood red rose is almost hidden in the tangle of small wild stems that peek out of fallen bricks. The space definately needs loving care.

And we love you Sasha, you are in our hearts every day.

The Dr Jay Children's Grief Program

Thanks to the committee of the The Dr. Jay Golf Classic for organizing this fundraiser for paediatric palliative care and for inviting us to share Sasha's story.
I can think of no better place to be on the eve of the one year anniversary of Sasha’s death than to tell you all about the key role of the Dr. Jay Children’s Grief Program in giving us the courage to bring Sasha home.

Our happiest days were the births of our two daughters. Sasha, our first, was born June 6, 2004 and shortly after she popped into this world we discovered she had a serious congenital heart defect and Alagille Syndrome, a rare liver disease. SickKids told us her condition was extremely difficult however they would take her on as a surgical candidate. At eighteen months, after multiple catheterizations and heart surgery, Sasha was thriving and all was going as planned. However she then suffered severe complications after her 2nd surgery in December 2005. The 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 her quality of life kept dropping.

We basically moved into the hospital, the weeks turned into months and Sasha was dependent on nutrition through an IV and almost daily blood transfusions. Mom knew she was dying but I kept hoping she would get better. After 5 months at SickKids, we were exhausted and we needed an intervention. A friend gave Pamela the phone number for the Temmy Latner Center, where the Dr Jay Children’s Grief Program is situated. The counselor challenged us and asked the questions we didn’t want to ask ourselves. We spoke about Sasha’s death and as soon as we left the his office, we knew that we wanted to take Sasha home and, as important, that we could take Sasha home.
We wanted her to see her house, her dog, her toys – we finally felt, as we considered the ending of her life, that the quality of her life was again the top priority.
On the Dr Jay website, there is an article by Jennifer and Celidh, two of the program grief counselors. Celidh worked with Sasha when she was in Child Life at SickKids. The article ends like this: "It is crucial that caregivers realize by not talking to the children about death, they are not averting a fearful situation for the child; rather the child is already in that situation and what they are evading is an opportunity to reassure and offer a sense of security for the child. However, if children are able to express themselves freely, they have the invaluable opportunity to receive emotional support from their loved ones, to feel included in the family's experience, to be reassured and that they are not alone and that, while altered, their family is still a family." Just like siblings, parents need that reassurance and emotional support. The Dr Jay Children’s Grief Program gives parents the emotional support to take a dying child home or to stay in the hospital if that is their choice. It helps their siblings talk about their brother or sister’s life and death and then it helps the whole family grieve and remember and honor their child.

Every moment of going home was special. Time seemed super charged. 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 her around the house. Her first bath. Long sleep ins. Sleeping 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. The nurses worked with us to lessen their visits and let Pamela take over the nursing duties. Sasha was happier and more comfortable and her bleeding just stopped. The councelors l came over and we told them that Sasha was no longer bleeding, what do we do? Well we go on living. When Sasha’s paediatrician came to check on her we had completed a full circle, Sasha was back with her community doctor. There were no more blaring intercoms. We walked the neighbourhood, hung out with family, and celebrated Sasha’s second birthday.

I would like to share some of my diary from the time:

May 17, 2006: After five long months at SickKids Hospital in Toronto we are taking Sasha home. Not as we expected and hoped, to continue our lives happily together, but to let Sasha go to sleep in her home, in our bed, surrounded by our love, at the time of her tired body's choosing, in as much comfort as we can provide... .
May 19: She just doesnt feel like sleeping tonight, she is bubbling with new words, moving the milk bottle back and forth between her hands, clasping with one and slapping with the other. Squeeks, exclamations, laughs in her throat as she drank the milk.

Mom: sasha has been home since wednesday and we all could not be happier. she has taken over our bedroom even though she has the prettiest bedroom in the house. we are slowly getting into a new routine everything seems very manageable. it feels amazing having our whole family under one roof again and i hope we continue to help sasha be happy, comfortable and safe.

May 28: One of the strangest and most welcome experiences on our return has been to give Sasha complete peace and quiet and normality. We change her IVs in the morning and at night, other than that we get to hear the birds chirping outside and during the last week we have enjoyed sleep ins with our little peach that are blissful.

June 6: "Well, we are lucky to enough to celebrate our little peaches birthday today with most of our family. Sasha was so excited that she was turning 2 that she did not sleep the first 5 hours of June 6. Jonathan and I were able to slip away to get some groceries while Sasha took an extra long nap with Raina. All of Sasha's grandparents and most of her aunts,uncles and cousins were able to attend and the weather held up which allowed us to spend the whole time in the backyard. We presented Sasha with her birthday cake and I couldn't keep my eyes off of Jonathan who sang her birthday song with tears rolling down his face. It was an emotional day for us knowing that this will be Sasha's last birthday with us. After we all gobbled down our yummy Loblaw's cake, Sasha was ready for a change of scene and Bubby and Lynn took her for a little promenade around the neighbourhood. While we were giving Sasha her medicine, we started opening her gifts but her tiredness cut the gift opening short. Nonetheless, we want to thank everyone for all the beautiful gifts for Sasha. We also want to thank the palliative care team for sending the birthday balloon bouquet."

June 16: "Tonight she played my fingers like an instrument. She has the most amazing fingers which we noticed when at a very young age she started to fan the thin thin paper in the phone book. She loves drums and xylaphones and putting a finger out to be touched. Tonight she ran the edge of her fingers over my fingers, with the touch of a feather. Another new thing over the last few weeks is that she flicks her eyes open and shut like a little game between us."

June 20: "Sasha slept, we lay with her, padded about the house, did some cleaning and gardening. Marcia and Henry visited and sat with Sash and then we sang Sasha Baa Baa Black Sheep and touched her brow to close her eye, she's an open eye sleeper. She breathed five times quickly and I kissed her and walked into the hall and Lorna called me immediately. She was not breathing; I kissed her brow and told her everything was ok beautiful girl. About 20 seconds later she exhaled deeply and left us peacefully at 6.20pm, Tuesday June 20, 2006. Dr Goldman took out the PICC and we changed her diaper, put on a beautiful pink dress and lay with her until the funeral service came and I carried her out wrapped in her blanket to the wagon. Sasha fought for a month, to be at home after 5 monthes in hospital, when the bleeding had taken all her energy she left us in 14 hours. You are free sweet baby girl! Thanks for what you gave us Sasha, you are always a part of our family, the Alagille family and the health care family that you touched deeply."

Mom: "Walking around the house without her sounds and screams is strange. Wanting to touch her and feel her weight on me makes me ache. As I pace around the house, not sure if the pains in my belly are contractions, I enter every room only seeing Sasha. Going to bed tonight knowing I won't hear her vibrant voice makes me so sad. In so many ways I wanted Sasha to meet her sibling and have that moment. We tried so hard for her to experience as much as she could."

Pamela went into labour four hours later and Mia was born 11 and a half hours after Sasha died. At one week of age, Mia was in a stroller graveside at Sasha’s funeral. During shiva services, family and friends and doctors and nurses who visited would be directed to the right to see the grieving family and upstairs to see Pamela and Mia. It was a strange scene, kadish downstairs, coos and laughs with baby upstairs.

The Dr Jay Foundation motto 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 and I could speak all night about how incredibly special it was at home with Sasha but here are a few final thoughts.

We would not have returned home without the emotional support of the counselors whose work is funded by the Dr Jay Children’s Grief Program.

After experiencing very high standards of care from Sasha’s SickKids cardiologist, the doctors and nurses and grief counselors picked up the support role without dropping a beat. They were incredibly positive, gave us as much space as we needed yet were always available.

And as the hospital gave us a good life with Sasha, so The Temmy Latner Centre and the Dr Jay Children’s Grief Program gave her the good death at home that she deserved. In Nov, the grief counselors organized a Ceremony of Remembering for a number of bereaved families and it was 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 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.

And Dr. Jay, without even realizing that his generosity had already helped us, was the first person to reach out to us after Sasha’s story was written about in August 2006. That email made my day and I would like to read it to you.

Hello Jonathan: I read your article in the Toronto Star. First let me say how sorry I am for your loss. In the next breath, I am so greatful for you coming forward to help the awareness that there is a tremendous lack of pediatric palliative care in Canada. I have dedicated my life's work to helping and I would love to speak with you personally to help you so that you do not have to reinvent the wheel.
Best regards, Dr. Jay Bacher

I vividly recall our first conversations, mostly because Dr Jay was such a good listener. He helped show us the way to turn grief into support for these fragile and beautiful kids and their families. Through their fundraising work for paediatric palliative care, Jay and Fern were in our lives before we met them in person.

The pictures of Sasha, Pamela and myself on your pledge binders were taken by Heather Rivlin on the first morning home as part of her volunteer work. I’d like to thank the Dr Jay Foundation for helping make this picture possible and we thank all of you tonight for your generosity in helping bring very sick children home to the places they love most.

Sasha Bella Walk for SickKids Family-Centred Care

A small family walk in the Cedarvale Ravine blossomed into the 1st Annual Sasha Bella Walk with over 100 participants, just before Sasha's birth date on June 6. Mom walked Sasha through Cedarvale almost every morning, hoping that the oxygen from the forest canopy would spur her tiny pulmonary collateral arteries to grow. The valley was lush green, the rain held off, the clouds kept the sun's heat hidden and cool breezes accompanied the sea of white T-shirts with Sasha's picture. No surprise that the first registrant at 9am sharp was Sasha's nurse Grace, soon joined by Lauren, Tessie, Riley and Julie. Family, friends, friends of family and friends of friends enjoyed the cool shady walk to the Bathurst Bridge and then back. The short walk was, as promised, short; perfect for the kids and many pregnant moms, some due any day. We then enjoyed snacktime of freezies and pringles as Terri and Oulina broke out the bongos and shakers and tambourines for a drumming circle that held back the rain.

We thank you all for your generosity and we appear to have doubled our modest goal of $3600 (have to get final numbers from SickKids Foundation for online support by those who could not join us). This was a learning experience for us in every way and Mom did such a good job. Permits and insurance. Invite emails with map, registration, pledge sheets. And of course supplier requests. Big thanks to Debbie Josephs at Kisko Products for freezies, Balloon Corporate Events for the pink balloons, Stanley Marcovici at Turnkey Corporation for the T garments and Peter Chaltas at Beaverbrook for discounted T printing.

At the end of a successful FUNdraiser, there is the lovely surprise of the stacks of little folded cheques and bills and pledge forms tucked into envelopes of all shapes and sizes that trace how friends spread the word to other friends, work colleagues etc. Meredith went around Toronto General Hospital's emergency and Sasha's nurses did the same at SickKids. Marni, Ryder and Jen, Granny Marcia, Mark and Lisa, Erika and Harvey, the Drego family all did a fantastic pledge job! Paul and Julie helped their daughter Micaela organize a bake sale and lemonade stand that raised $60 in quarters and loonies on a hot Saturday morning with a delicious assortment of frosted cookies and cupcakes and organic doggie biscuits [recipe and pictures coming soon] - way to go Micaela.

Sasha's wonderful SickKids nurses

Sasha's SickKids nurses work 12 hour shifts requiring meticulous concentration, exquisite gentleness and expansive empathy for young patients and their parents. We simply take these extreme skill sets for granted though it is hard to imagine a more difficult balancing act. Sasha's nurses would typically chat her up and get a smile before reaching for the caps or bandages and all pricks were pre-discussed in case Mom had any thoughts about where and when. SickKids nurses visited Sasha during her end of life return home, came to her funeral and shiva (accompanied by Sasha's doctor) and visited us for tea and cookies as we grieved our little peach these last 12 months. And I suspect its not a case that a nurses's work is never finished as much as that the bond that develops inside the hospital is too great to be boundered by its walls. The T-shirts had Sasha's picture on the back but I suddenly realised that all the nurses had Sasha's picture on the front; for the picture, they flipped their T-shirts. So kind and so clever.

Dad with Grace, Riley, Lauren, Julie and Tessie

Lemonade stand SickKids fundraiser

Bakesale for Sasha Bella FundMichaela and Georgia, helped by Kiki, Lauren and Jake, worked hard the day before the Sasha Bella Walk to fresh stock a Bubba 3.74 litre kegger of lemonade with delicious cakes, cookies, and cupcakes dripping with chocolate, pink and green icing and tasty organic doggie biscuits. The crew even made a basket of home made soaps in vibrant blue, yellow and pink, each with a little surprise. I picked the sea horse and a pretty little fish. Thanks guys for showing us how much fun it can be to fundraise!

creating the menu for the Sasha Bella Fund Bakesale menu

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.