Spring 2017 Canuck Place Family Advisory Council Newsletter

Family Advisory Council ISSUE NO.6

SPRING 2017

COMING UP FAC Meetings When: Second Thursday of every month Where: Great Room, 1690 Matthews Ave, Vancouver

Date: May 11

A Look Ahead The Cunninghams, Canuck Place Family

May 7 BMO Marathon

MESSAGE FROM THE FAC

May 13

Hello and welcome from the Family Advisory Council (FAC)!

In this Spring edition of the FAC newsletter, you’ll find exciting news regarding a recent provincial government announcement, new services available for families, and a variety of events that Canuck Place families attended.

We are currently looking for new members to join the FAC in the coming months. Please let us know if you are interested in joining by contacting us at family@canuckplace.org.

Wishing you a beautiful spring, Frank Fedorak, Family Advisory Council Chair

Best Day Ever Blanket Fort Vancouver (*see p. 4 for more details)

June 24, 1-4pm Family Barbecue in Canuck Place Gardens (*notice will be sent out by email/mail soon)

June 25 Scotiabank Marathon

MESSAGE FROM THE CEO Dear families, It has been an eventful start to the New Year and I am feeling energized by the recent provincial government announcement. The certainty of funding allows us to plan and grow, and continue to serve children and families, our teams, donor and partners. This is a truly wonderful time in the organization.

On behalf of our staff, volunteers and supporters, I wish all our families a beautiful spring!

Warm regards for the coming year, Margaret McNeil, CEO, Canuck Place Children’s Hospice

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CanuckPlaceChildren’sHospice

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ISSUE NO. 6 - Spring 2017

Family Advisory Council Newsletter

Canuck Place Children’s Hospice receives committed funding from Province of BC Exciting News!

Canucks for Kids Fund’s 17th annual Dice and Ice Gala On January 31st, Canuck Place parents, Jordan and Kerena Letcher were invited to speak at the Canucks for Kids Fund’s 17th annual Dice and Ice Gala which raised over $540,000 for the Canucks for Kids Fund. They shared the story of their six-year-old son Heston, who was diagnosed with Sanfilippo Syndrome, a rare disease that results in speaking and mobility issues.

Honourable Michael de Jong, Minister of Finance announced that the Province of BC will provide Canuck Place with a one-time grant of $4M for the 2017-18 operating year followed by a committed funding model in 2018-19 of $5M per year! This funding is an increase from the 2016-17 grant of $3.3M. This is great news, as we now have the ongoing, committed funding from the government we need to expand provincial services.

The Letchers shared their immense gratitude for Canuck Place with the room:

This commited funding will provide a solid foundation for: • our current care, services and programs for children and families • expansion of in-home and community-based care • phased-in opening of beds in Canuck Place's second location, Dave Lede House in Abbotsford beginning with one weekend per month starting May 2018 and then four beds operating in January 2019 As the funds from the Province comprise 40% of Canuck Place’s operating budget, we still need to fundraise. In this continued partnership, Canuck Place will work diligently to fundraise the 60% of operating funds.

Canuck Place raises 60% of its operating costs.

40%+ of children and families cared for by Canuck Place reside in the Fraser Valley Health Region

11% increase in children and families who received care

Gift of Love Gala February 18 - Over 300 guests celebrated timeless love with Canuck Place at the 3rd annual Gift of Love Gala in Abbotsford.

Presented by MNP, it was a memorable event that raised over $275,000 for Canuck Place!

Among the guests were Canuck Place parents Petra Fellinger and Rolf Schwuchow, whose four-year old son Nicolas is on the Canuck Place program. Both parents shared their profound experience caring for a child with Spinal Muscular Atrophy Type 1.

Their inspiring words captivated the audience and they articulated the importance of Canuck Place in their lives as they continue on this unpredictable journey.

ISSUE NO. 6 - Spring 2017

Family Advisory Council Newsletter

Left to right: Vancouver Canucks President Trevor Linden, Canuck Place parents Kerena Letcher, & Jordan Letcher

Canuck Place is one of the key beneficiaries of the Canucks for Kids Fund.

“If you have donated to Canuck Place, you have not only supported over 670 families across the province, you have supported us,” said Kerena, “You have given a six-year-old boy, with a terminal diagnosis, a place of comfort and care for the time he has left. Your giving has made and will continue to make an incredible difference for us.”

Teen Retreat Camp - Mission Impossible: Possible From March 16th – 18th, for the first time ever, Canuck Place organized a teen day camp based out of Dave Lede House for twelve youth and siblings and their parents. The days were exciting with wonderful memories created and friendships forged. New experiences included helicopter rides, a tour of Aldor Farm, a nighttime zoo safari (complete with a campfire and smores) and a trip to an Escape Room. Parents capped off their day with a winery tour and the whole camp wrapped up with an incredible magician and visit from local movie stunt performers.

Camp is not always about the big moments, sometimes it’s the small things that we take for granted that end up being the most meaningful – one mom commented on a particularly special moment for her during camp – being able to physically sit next to her son during the helicopter ride. Because her son uses a wheelchair for mobility, their seating proximity typically involves part of his wheelchair being in between them.

Canuck Place Camps are always “come as you are and we’ll meet you where you’re at”. Everyone is embraced fully for all that they are. At Canuck Place, we see in children potential not barriers or disabilities.

Left to right: Petra Fellinger, Canuck Place CEO Maragaret McNeil, Rolf Schwuchow

“Nicolas’ medical care can be labour intensive so being able to come to Canuck Place and have the nurses, doctors and volunteers step in is a huge weight off our shoulders,” said Petra. “This means we can simply focus on savouring the time we spend together. This time is a gift.”

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ISSUE NO. 6 - Spring 2017

Family Advisory Council Newsletter

ISSUE NO. 6 - Spring 2017

Family Advisory Council Newsletter

Clinical Profiles

Family Fundraisers Canuck Place is fortunate to have families who give their time fundraising for Canuck Place. For the upcoming BMO Vancouver Marathon on May 7th, Kathleen Cabahug is dedicating her run in memory of her brother-in-law, Kristian Domingo, who passed away at Canuck Place on August 16th, 2016 at the young age of 20. While Kathleen admits that the marathon will be one of her hardest challenges, Kristian’s unyielding determination and strength (in the months before his death, he participated in the 10k Vancouver Sun Run and finished!) serves as a source of inspiration for her during this race.

Kathleen also expressed her gratitude for the support that Canuck Place provided for the Domingo family. “What Canuck Place has done is provide a place where families can come together to mourn for their child and to receive counselling support from not just counsellors, but from other families who have gone through a similar experience,” Kathleen said. “They have provided a sense of community to support families who don't have much support.”

Kristian Domingo

Canuck Place Family Skate Back in November, the Canucks for Kids Fund hosted a family-fun skate day at Rogers Arena. Fin, Bo Horvat and Troy Stetcher all took the ice to skate with Canuck Place families, making it a memorable and special day for everyone.

Camara van Breeman, Nurse Practitioner In her 22 years with Canuck Place, Camara has worked with children and families across their lifespan and care settings. She provides consultation at BCCH or BCW (NICU) on wards or in clinics (such as oncology) where she connects with children/families and their teams and offers support related to pain and symptom management, advanced care planning or care coordination. In addition, she supports families in their home communities via phone, home visits, or telehealth. Throughout her work, she has had the opportunity to travel to communities outside the Lower Mainland to provide home visiting and care coordination for families who really want to support their child’s final weeks and months of life at home. These visits will often include educational and emotional support for the community providers who need support in providing this specialized care.

Shanna van Nen, Clinical Resource Nurse Shanna has worked at Canuck Place for 15 years and has had the honour of walking with many families on their journey. As a registered nurse, she has taken part in many different programs at Canuck Place ranging from Camp, Summer in the City, Teen Group and Bereavement Group. Her new role as a Clinical Resource Nurse, has her working out of Dave Lede House where she follows families on an outpatient basis and connects with them in their home environment. She has a wonderful husband, 4 kids (2 teens and 2 little ones) and is currently working towards becoming a Nurse Practitioner. Shanna loves the work that Canuck Place does and is so grateful to be a part of such an amazing team.

FAC Family Member Profile: Jens Locher Jens Locher came to Canuck Place when his first son Marlon suffered complications during delivery in 2011 and was transfered to the hospice for end-of-life care. He and his wife benefited tremendously from the support the team provided their family with.

In 2012 his second son Tobias was stillborn and Canuck Place supported their family again. Jens and Kerstin stayed in the bereavement program for a couple of years and they found events such as Remembering our Children and Precious Pictures very helpful during their grief.

Since 2013 Jens participates in the FAC as a way to give back to Canuck Place. He worked on the Out and About resource guide to help families staying at the hospice locate necessities around Canuck Place and is active in advocating for bereaved parents in the province.

Best Day Ever Campaign Canuck Place is excited to announce the launch of their Best Day Ever fundraising campaign taking place for the entire month of May! This fun campaign celebrates the different ways Canuck Place families savour time together and invites the public to reflect on and share how they spend their best days ever.

To kick-start Best Day Ever, Canuck Place is launching the largest public blanket fort in Vancouver on May 13th, with a full day of family-friendly fun, music, and entertainment (with special appearances from Disney princesses and superheros!). Visit canuckplace.org for more information!

Location: TELUS Garden 590 W Georgia St, Vancouver, BC Time: 11 am - 3pm Admission: FREE for the whole family

Charlie-Anne and mom, Cherie are the feature family for Best Day Ever

Welcoming Families to our Program: Updating the Family Handbook Over the past months, members of the Family Advisory Committee and the Canuck Place multidisciplinary team have been updating our Family Handbook. The book outlines who we are, the services we provide to families and stays at Canuck Place. The new handbook is separated into two books, one that describes our program/services and team that provide care both in and out of the house and the second book focuses on booking stays, services unique to in hospice stays and general guidelines. We hope that the changes will improve communication to families and increase understanding of how we can help support families on their child’s health journey.

The new handbook will be available in June and be given to new families joining the program. It will be available on our website for downloading/reference, in our family suites and given to any family who requests a new copy.

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Jens Locher with his son Tobias

CanuckPlaceChildren’sHospice

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Family Advisory Council Newsletter

Issue #5 - Fall 2016

Bereavement Services

Family Advisory Council Newsletter

Issue #5 - Fall 2016

#LoveWhoYouAre Campaign

The demand for bereavement services continue to grow at both locations. The counselling staff in Vancouver and Abbotsford provide ongoing bereavement follow-up through phone calls, groups, and 1:1 session and support family events offered through our recreation therapy program.

In total, there are 237 families receiving active follow-up and 116 bereaved families throughout BC who remain connected to our services.

"To us the children of Canuck Place exemplify the triumph of the human spirit.

The opportunity to capture this in portraiture was a joy and privilege."

– The Collective You

February 2017 - In the days leading up to Valentine’s Day, Canuck Place introduced the #LoveWhoYouAre Campaign to celebrate the unique characteristics of Canuck Place children and their siblings, displaying their inner and outer beauty. Canuck Place partnered up with The Collective You to capture stunning black and white portraits of Canuck Place children and siblings, paired with words their parents use to describe them.

Support Groups Vancouver Parent and sibling groups are held concurrently every Wednesday (siblings 4-8 years). There are 18 parents and 7 siblings registered.

Abbotsford • • •

Parent and Sibling Groups (siblings ages 5-12 years) held concurrently every second Tuesday. There are 15 parents registered and 12 siblings.

A second bereavement group for parents started in October 2016 is held every second Thursday and has 13 participants.

Grandparent bereavement support is being piloted in Abbotsford and runs from February till June 2017. This group runs concurrently with the parent group, every second Thursday evening. There are 11 grandparents (7 families) attending.

Provincial Bereavement Support • Precious Pictures Bereavement Support Groups: Scheduled four times a year between our two locations. For the first time, a group was held in Victoria for the families on Vancouver Island in March. At this group session, families create memories through scrapbooking pictures of their child. There were six families (total of 17 parents and siblings) who attended.

• Chat Room for Bereaved Families: An online chat room for bereaved families is being piloted in order to support families who live outside the Lower Mainland. The pilot is being trialed in April with input from the Family Advisory Committee members and archived bereaved parents. In May 2017, a 10-week online group for bereaved parents will provide support Tuesday evenings. This means that parents from all over the province can connect into a bereavement group. The group is limited to 10 to 12 participants.

From Precious Pictures event

• Youth Support Groups: A support group for youth siblings and youth on program, ages 13 – 19 years, is being piloted for six sessions from April till mid-June. The focus of the group is to provide space for youth to express themselves through art and music activities.

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CanuckPlaceChildren’sHospice

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Family Advisory Council ISSUE NO.6

SPRING 2017

New Initiative: Communication tool to Parents FAC member, Alysone Martel wanted to start this project at Canuck Place, it is a tool to promote communication to parents about the activities their children take part in while staying in the hospice.

Sunnyhill Hospital uses this in their setting and Alysone felt it would be wonderful to use at Canuck Place.

Alysone discussed with the Volunteer Coordinator, Kiran Hundal, who worked on getting this volunteer led initiative started at Canuck Place. It is a handbook that is attached to children's wheelchairs/walkers/ back backs and mainly for children who can't communicate verbally to their parents. Volunteers write in the handbook what a child did during their stay but any staff member can write in it. The highlight of doing this is when the child goes home, the families can have a read through and get a little snippet of what their child did during their stay at Canuck Place! So watch out for the handbook, take it home with you and bring back the next time.

Paintings from the Canuck Place Art Room Canuck Place children used an adaptive paint spinner to create these beautiful pieces of art!

Levi, a child on program is making colour magic with this tool!

Spring is in the air and butterflies are the inspiration at Canuck Place!

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CanuckPlaceChildren’sHospice

@CanuckPlace