Why I am a Visiting Home Hospice Volunteer

In honour of National Palliative Care Week, we are shining a light on our amazing Visiting Home Hospice volunteer, Christine Wing. Her dedication to providing comfort and support to clients like Isabelle Phillips is truly inspiring. Here’s her story in her own words…

Why I am a Visiting Home Hospice Volunteer

The sound of silence, with only a far away hint of a laughing, happy Mom and Dad. Their child with special needs is safe in the hands of a caring Roger Neilson Children’s Hospice Visiting Home Hospice volunteer. She is calm, quietly focused and engaged in her new favourite activity.

Finally! Mom and Dad get a few badly needed hours of respite, and their child is happy, safe, challenged and adored by a carer in her home. That is what I hoped for, and appreciate as a Visiting Home Hospice volunteer.

When I was first volunteering in house at Roger Neilson Children’s Hospice, I quickly became overwhelmed at the depths of the needs of our special children and the demands placed on extremely worried, exhausted and overwhelmed parents. I longed to know each child better and to help them achieve their full potential. I felt I needed to do more for both the child and the family!

When asked if I’d like to volunteer for the Visiting Home Hospice, I was initially a little concerned because I know that I do tend to fall in love with children easily. I wondered, “Could I keep myself within professional boundaries?”

I have found this to be a very rewarding mission. My goal is to help the parents while keeping the child safe and having fun and I believe that most of my visits do that. My child happily greets me as I come through the door, her parents chat with me, then they quickly retreat. Mission accomplished!

Oh yes, I did quickly fall in love… but that’s ok. Roger Neilson Children’s Hospice has taught me how to do that while still being able to say good night and go home…until my next visit.

By Christine Wing, Visiting Home Hospice Volunteer, Roger Neilson Children’s Hospice

National Physicians’ Day 2024

An interview with Dr. Rohail Kumar

DR. ROHAIL KUMAR, HIS WIFE MARISSA AND LEO THE CAT!

Today is National Physicians’ Day! Join us as we thank our physicians for the care, dedication and compassion they show every single day to help improve the quality of life of infants, children, youth and families.

We are celebrating the day with this insightful interview featuring a dedicated pediatric hospice palliative care physician! 🩺 Learn why Dr. Rohail Kumar chose to specialize in this challenging but meaningful field.

Why did you choose pediatric palliative care medicine?

Initially I wanted to pursue a career in Pediatric Critical Care. It’s similar in the sense that both palliative care and critical care deal with medically complex patients. However, there are some nuances between the two, and they can both be viewed through the same and yet a very different lens. I took care of many patients in the PICU who unfortunately, did not survive. It was those experiences that made me pursue a career in pediatric palliative care. I wanted to help families beyond the acute management of their serious illness and to help advocate for them and provide them with a sense of empowerment in participating in their child’s care though often very challenging times.

Why is pediatric palliative care so important to children and families who need it?

A: Pediatric Palliative care aims to help children and their families who are navigating a serious illness, so that they can fully enjoy the remainder of their life- however short or long that may be, doing what they love, being with those they want to be with, and making beautiful memories not only for themselves, but for those who will be left behind. It is about providing dignity and support to continue living their best lives, with pain and symptoms well managed, and without being fearful of their journey. Some patients have more time than others, and health declines rapidly for some. However, I believe palliative care is about living life in the here and now and optimizing quality of life. Serious illness often leads to physical, emotional, spiritual, and social distress for children and their families. Palliative care provides a holistic approach to address these and hence is such an important aspect of care for those who need it.

What brings the most meaning to your work?

Being able to support children and their families through serious illness is nothing short of rewarding. I think every aspect of my work is meaningful.

What is one of your favorite memories working with children and families with palliative care needs?

I can think of a recent memory – I went for a home visit along with a colleague recreational therapist to visit a patient and their family. The patient often played UNO with the recreational therapist and I was invited to join their game that day. I kept losing game after game (even though I tried very hard). It was an exceptional moment where I was able to witness a child who was close to dying, and yet so determined to win the game and celebrate each victory with such passion! The smile on their face every time they won a game has become one of my favorite memories!

Exceptional Moment: Audrey’s Star

Audrey’s Star

Thank you to the Algonquin College Public Relations program for their incredible enthusiasm and hard work throughout their fundraising campaign, and for their commitment to helping Roger Neilson Children’s Hospice improve the quality of life of infants, children and teens with a progressive life limiting illness, and their family.

Exceptional Moment: Kanata Quilt Guild

Kanata Quilt Guild

A heartfelt thank you to the Kanata Quilt Guild for sharing such beautiful quilts with our kids. Each of the children’s rooms has its own unique quilt, providing comfort and making Roger Neilson Children’s Hospice feel like a home away from home.

Pictured left to right: Judith Pach, President & Quilter, Pauline Farey, Vice President & Quilter, Carol Dworschak, Charity Quilter, and Carinne Moreau, Personal Support Worker.

 

Exceptional Moment: Robbie Burns Fundraiser

Robbie Burns Fundraiser

Celebrating the success of the Robbie Burns Supper fundraiser for Roger Neilson Children’s Hospice by The Scottish and Irish Store with a cheque presentation! 🎉 This year, an incredible $15,000 was raised, contributing to a grand total of $182,000 over the years! 🙌 The funds go directly to providing quality palliative care to children and families in our community.

Pictured left to right: Bob Ghosh, Eric Stacey, Michael Cox, Emily Jamieson, Bruno Perrier.

 

Exceptional Moment: Year-End Gratitude

That’s a wrap

We’re grateful for your support all year long

It’s only natural to want to take stock of all we’ve experienced as we come to the end of the year. At this time, we want to express our deepest gratitude to everyone who helped make Roger Neilson Children’s Hospice a special place for children and families this past year.

Your care, compassion and generosity are what makes the experience of our children and their families so special. We appreciate everything you do, now and all year long.

 

Exceptional Moment: Butterfly Run

Annual Butterfly Run supports pregnancy and infant loss care at Roger Neilson Children’s Hospice.

“Being a bereaved parent is a walk no person should do alone.”

Living life to the fullest, no matter how short

It’s a tough statistic, one that demands greater awareness and advocacy; pregnancy and infant loss affects 1 in 4 Canadian families, while 1 in 6 are affected by infertility issues. Inspired by the butterfly symbolism of transformation and moving forward, forever changed, the Butterfly Run began in 2017 as Aaron’s Butterfly Run, the first charity run of its kind in the Ottawa area.

Based on the belief that the path of being a bereaved parent should not be walked alone, the Butterfly Run is dedicated to increasing awareness and compassionate support for the parents and families who have experienced pregnancy loss, infant loss, pregnancy after loss, and infertility. In addition to being a time to come together to hear, to share and support each other, all proceeds raised help to fund the Roger Neilson Children’s Hospice, particularly the Perinatal Hospice program, which supports families whose babies are likely to die before, during, or shortly after birth, as well as the Perinatal Loss Bereavement Support Group.

The 2024 edition of the Butterfly Run will be held on Sunday October 6.  To participate support these courageous families as a volunteer or to donate or sponsor a runner, go to www.butterflyrunottawa.ca.  For more information on how Roger Neilson House supports families suffering loss, visit [RNCH link.]

Exceptional Moment: Kyle Turris

Baking cookies and making memories

Former Senator’s centre visit scores plenty of smiles.

Roger Neilson Children’s Hospice kids enjoyed a great afternoon thanks to a visit by former Senator’s centre Kyle Turris.

Turris, who retired from the NHL™ in 2022 after 14 seasons, more than half of his career playing for the Ottawa Senators, has a reputation for being one of the most well-liked players in the franchise’s history. We definitely know why. Kyle generously spent time with us, autographing cards and helping us bake, making it a memorable time and bringing plenty of smiles to our kids’ faces.

We want to thank Kyle for taking time to make such a special visit – and once again, share our gratitude for the wonderful relationship we have with the Ottawa Senators hockey club.