Olivia Lourenco, Recreation Therapist at Roger Neilson Children’s Hospice (RNCH), says that people might find it surprising to learn that her work environment is full of fun and incredible moments. “There are a lot of happy times here. Most of my days here are spent playing, laughing and helping families to create lasting connections and special memories.”
Following years of education and experience focused on supporting children and adults with complex needs, Olivia came to RNCH three years ago first as a Recreation Therapy Assistant and then Recreation Therapist. A naturally compassionate and empathetic person, Olivia says that she came to RNCH wanting to provide the best possible quality of life for the children and youth visiting and staying there.
Asked to describe a typical day at RNCH, Olivia shares that every day is unique in a good way. “The plan for each day has to be flexible and accommodating to the needs of each child and how they are feeling. Their interests shape the day which can look very different depending on the children we have onsite. When a child wakes up wanting superhero day, the morning can quickly transform into the best day ever!”
Explaining that different age groups request different activities, Olivia recalls teen movie nights with ice cream and visiting friends and graduation parties for kids who are now adults in their twenties. On another memorable and meaningful day, staff hosted an onsite cookout so that an extended family could gather and spend time with their baby, outside of a hospital setting. “We want to normalize things for families, create a homelike environment, and support children by providing a space where they feel comfortable opening up and being themselves.”
Listing baking as a top activity, Olivia says that the process is not just about creating delicious treats. “They are getting to feel flour, touch chocolate chips and explore their senses in a different way. It also allows them to create something to share with others. Kids love to go door-to-door delivering treats, open an ice cream shop, or hold a bake sale.”
A trip with Olivia to the downstairs kitchen introduces 13-year-old Raphaël who is hosting his own cooking show for a group of enthusiastic staff. His chosen creations, maple and brown sugar bacon with pancakes, are served to anyone lucky enough to wander through. Delegating tasks and offering taste tests, Raphaël shares that he loves being able to cook again in a kitchen that accommodates his wheelchair. It is easy to see how the fun continues to flow at RNCH, when Raphaël joins the tour and turns it into a spontaneous costume party.
A sunlit playroom reveals a wall of craft supplies, cozy vignettes and tables. Pointing out a whimsical costume wardrobe and stunning olive tree, Olivia says that many items and pieces of art at RNCH are there in honour or memory of a child. “We play a lot of games in this playroom and try to adapt them so that everyone can get involved. The top priorities are always fun, and for everyone to feel welcomed and accepted for exactly who they are as people.”
“Roger Neilson Children’s Hospice provides a place where children can have autonomy and advocate for themselves. They can direct their own care and focus on the quality of their life.”
Through a set of nearby doors, Olivia leads the way to an outdoor patio equipped for circle time, activities, and the beloved music played by a regular volunteer. A raised veggie garden outside gives kids the opportunity to be part of the garden-to-table experience.
“Kids can make their own lunch from what we grow. The garden has a pizza-theme right now due to a boy who loves pizza. Almost everything in it will soon be used as fresh toppings in the kitchen.”
The patio also plays a valuable role in RNCH’s highly anticipated summer day camp. Says Olivia, “This program provides a space for kids with complex medical needs to 2 come and experience a typical day at summer camp. The camps bring recreation-based play, visiting balloon artists, face painting, tie dye and dress up. We create theme weeks, play games and go on excursions. During quiet time kids can stretch out, watch a movie, enjoy some sensory lights and can catch their breath.”
When asked for reasons why places like Roger Neilson Children’s Hospice are so important for children, Olivia supplies a lengthy list.
“The incredible team here can offer a controlled environment, where nurses provide the medication and care, so that parents can just be parents. A lot of the time, a medical setting is focused on curing an illness but in palliative care the focus is on the whole person. In my role that means providing chances for kids to explore who they are, discover new things and find their passions. Sometimes something very small can be incredibly meaningful to these children. They have taught me so much about the importance of appreciating all the little things in life.”
Catching Up with Roger Neilson Children’s Hospice Nurse Jackie Davis
Asked what a typical day is like at RNCH, Jackie smiles and points to her running shoes. “Busy! From the time a shift starts until it is time to go home. Our team is here to provide respite care, emergency respite care, symptom management and end-of-life care. When you take care of a child you are providing total care. This includes giving baths, changes, playing, and feeding the children.
Health care staff in the adult world are often there to treat a patient but staff working in pediatric care are caring for the whole patient. For us that means trips to the park, engagement and really wanting to make the most of each child’s day. The care we provide includes meeting a patient’s physical needs but also extends to ensuring that their emotional and social needs are tended to as well. You can really see the difference and how happy a child can be when focus is given to all three areas.”
Explaining that staff of RNCH are provided with the unique opportunity to care for a child from the time of a life-limiting diagnosis forward, Jackie says it is a privilege to support a family through their entire health care experience. “The term palliative care often makes us think of end-of-life care. However, palliative care for children is about supporting a family for sometimes just a few days but also sometimes for 12 years. RNCH is here so that children with a life-limiting diagnosis get to live the best life they can live and that includes supporting their family in providing the best care possible. We address changing needs, treat symptoms and prioritize emergency respite care for whatever reason provided. Walking in for each shift I look forward to seeing which children are staying with us and what fun activities are underway for the kids.”
When describing the staff at RNCH, Jackie cannot say enough. “I love the people I work with. Because this is such a small facility, staff can read and understand each other. This is not always an easy place to work but having someone who knows and has been through those bad times with you means everything. We have an amazing team who are all here to give our patients a better day. Part of this team is a new crew of young staff who give me so much hope for the future. They are full of contagious enthusiasm and fresh knowledge. Our volunteers are also a big part of this place. They bring a wonderful vibe, energy and the fun!”
Jackie says that people might be surprised to learn that RNCH is far from being a sad place to work.
“I couldn’t work in a sad place for 15 years! We have sad times but these are balanced with incredible moments. And there are things that happen here that I don’t think you could experience at any other job site. The goal is to improve and offer the best quality of life possible to each child, for however long that life lasts, and we take our cues from them. Plus, there is always something fun happening here! Most days include costumes, parties, activities and celebration.
Continuously inspired by the kids in her care, Jackie credits them for shaping her perspective of what truly matters in life.
“I have learned from working here to enjoy each day because you have no idea what tomorrow will bring. And that right now, this moment is all you have. None of these children want to be dealing with what they have every day. But they do. These incredible kids want so much to just live today and get as much joy out of it as possible. And even when they are in pain, or haven’t slept well, they still want to engage. They still want to go down to bake, play that game or go out for that walk.”
She also marvels at the strength and dedication of RNCH’s incredible families. “Every day the families we care for are trying to do the very best for their child while still managing life outside of these walls. These parents have mortgages, jobs, other children and marriages that they are trying to keep together. They may have up to five teams of specialists following their child, constant communications with school, evolving symptom management, endless paperwork and systems to navigate. And yet they come in here smiling again and again.”
To anybody considering work at RNCH, Jackie asks only that they come for the right reasons.
“Come here ready to care for someone else. It is about putting the families and children first. If you can do that, you like being around kids, and you have a sense of adventure, and a sense of play, then you should come here.”
Chris Vadeboncoeur (Medical Director), Stephanie Poirier (manager of quality and safety), Jackie Davis (RPN), Ian Hendry (chair of the board).
Our latest Good Catch Award recipient is Jackie Davis, RPN. Jackie was preparing morning medications for a guest with multiple different meds that parents bring in from home for the admission. When removing a tablet from one of the bottles, Jackie found a tablet that looked different. Because Jackie was paying close attention when preparing meds, she caught the incorrect tablet before the guest received the wrong medication – Good Catch Jackie!
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
It is with immense pleasure that we announce this year’s recipient of the Marion Rattray Award of Excellence in Pediatric Palliative Care, Dr. Stephanie van Zanten.
This award, given annually as part of our Hospice Palliative Care Week celebrations, recognizes the outstanding contribution of a Roger Neilson Children’s Hospice / Palliative Care Team staff member who demonstrates the following attributes and is nominated by their peers:
Shows creativity in fulfilling the dreams of children facing a life-limiting illness
Goes above and beyond in helping to meet the needs of the children and families using Roger Neilson Children’s Hospice services
Acts as an advocate for children, families, and pediatric palliative care, and
Works collaboratively with their colleagues & helps to promote a positive work environment in the face of grief and loss.
In 2024, we celebrate Dr. Stephanie van Zanten as the well deserving recipient of this award! Here is an excerpt from a nomination:
Dr. Van Zanten’s commitment to our EOL and PSMT kiddos and families goes above and beyond what is expected of her, and her work ethic is incredibly admirable. Her approach is gentle, assertive, collaborative, and above all else: compassionate. Through witnessing the way Dr. Van Zanten engages with families, she has served as a role model for me and helped shape the ways I engage and communicate with families myself. She is incredibly collaborative with the interdisciplinary team as well, and takes into account everyone’s insights and observations. She will always ask for my perspective on a patient or situation, and is diligent in expressing her gratitude after challenging cases. She makes me feel like I’m a valued member of the team and I’m confident others feel the same.
Congratulations Dr. Steph, we are so privileged to work alongside you, to have been supported by you, and to witness your patient advocacy.
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!
Nahal Yazdani (manager), Megan Wright (executive director), Stephanie Toll (RPN), Ian Hendry (chair of the board), Stephanie Poirier (manager of quality and safety).
At Roger Neilson Children’s Hospice, the nursing team must use the medication administration record (MAR) to obtain specific directions about the administration of medications. Stephanie Toll, RPN, noticed that the guest she cared for had unclear information about seizure rescue medications in the MAR. This could potentially cause a medication error where the timing of medication administration or the dose would be incorrect. She connected with the physician to clarify the order and confirm dosing, thus reducing the likelihood of error. Stephanie embodies our mission at Roger Neilson Children’s Hospice: to meet the unique palliative care needs of newborns, children, youth, and families. We advocate, advance clinical care, offer family support, and promote research and knowledge sharing. Good Catch, Stephanie!
Good Catch Award winner improves oxygen tank management
Attention to detail lets us all breathe easier
A big congratulations to Monica Sevigny RPN, recipient of the Roger Neilson Children’s Hospice Good Catch Award, which celebrates staff interventions that result in safer care for our guests.
Her keen eye and attention to details alerted us to the fact that our supply of full oxygen tanks was running low, which had the potential to delay our guests. Thanks to her intervention, we’ve improved safety and now have a better way to visually monitor and manage our oxygen tanks supply. Great job, Monica!
This is Monica’s second Good Catch Award, having been recognized in 2022 for bringing to light an opportunity to improve our verification of the availability, location, and contents of a tracheotomy emergency kit at the beginning of each shift. This good catch allowed for the development of more rigorous safety checks for emergency kits to support our guests.
