Monthly Archives: October 2019

Meet our Allied Health Team: Belinda Luther

What is your role at VSK?

Physiotherapist

For someone who might not understand what this means, can you briefly explain?

In general, paediatric physiotherapists have skills in managing children with a wide range of conditions which affect their physical development and health, mobility and ability to participate in everyday activities.

What’s unique about your role?

At Very Special Kids, I am able to use a wide variety of skills and knowledge.  Physiotherapy is individualised according to each child’s needs, these can vary greatly from child to child, and from one admission for a child to their next admission.  With a maximum of eight children staying in our hospice at any time, I am able to spend time getting to know children during their admission – their personality, their abilities, their challenges.  I am able to work intensively with children if required.
The opportunity to collaborate with Pip (Music therapy), Shari (Child Life therapy) and Svett (Art therapy) is unique and wonderful, enabling richer experiences for children. Creativity enhances physical outcomes, physical activities have greater purpose, and motivation is higher.  Similarly, calmness and tranquillity aid relaxation and comfort – this is so valuable during respiratory (breathing) physiotherapy treatments, massage and gentle stretching for maintaining flexibility, and relieving stiffness and pain.

What do you love about your role?

First and foremost, I love working so closely with all the hospice staff and volunteers in caring for our very special children.  I also love working with the Family Support Team, who not only have a wealth of knowledge but show such warmth and empathy for the children and their families.  I love that physiotherapy is valued at Very Special Kids, and that the hours have already been increased, which shows how well received it’s been. Our collection of equipment is steadily growing – soft play equipment, corner chairs and table, Scooot and the TRAM (a transfer and mobility aid, used for transferring children and assisted walking) which is largely due to fantastic support from our fundraising team.  This continually broadens the possibilities for physiotherapy treatment.

What does a usual day look like?

My day begins with reviewing children’s files and checking in with staff about any changes overnight.  My highest priority for physiotherapy is always respiratory management for any children who have breathing challenges. Following this almost anything can happen!  I could be involved in some or all of the following on a daily basis.
1. Assisting with transferring children from bed to wheelchair or any other piece of equipment.
2.Ensuring children are positioned in the best possible way whether this is to optimise breathing, prevent deformity, enable participation in activity, provide comfort or for pressure care.
3. Ensuring splints are put on correctly and used appropriately
4. Working on gross motor skills – tummy time, rolling, creeping, crawling, sitting, standing, cruising, walking, climbing  – this may well look like play time on the floor or in the soft play area or outside in the garden
5. Monitoring and adjusting equipment – Allen keys and screw drivers are never too far away!
6. Gentle stretching and flexibility
7. Music and movement group
8. Ball games, obstacle courses
9. Spending time to just be with the children.

What’s your background prior to VSK?

I began my career at Gippsland Base Hospital as a Grade 1 physiotherapist – a fantastic country hospital where I had the opportunity to work in ICU, general medical, surgical, ante natal, post-natal, paediatrics, community and outpatients all in the space of 15 months.  I was lured back to Melbourne by a job at the Royal Children’s’ Hospital and have worked in paediatrics ever since.  My role at the RCH enabled me to work across a wide range of specialty areas.
I have also worked at Glenroy Special School as a Grade 2 Physiotherapist, and continued to work at RCH on weekends in ICU and Respiratory Medicine.  I have been involved as a research physiotherapist in some projects through RCH and MCRI, investigating outcomes for children with cerebral palsy and preterm infants.
Prior to my role at Very Special Kids, I worked at Children’s Physiotherapy – a private practice – for 14 years. Being able to work with children with complex disabilities at the practice, in children’s homes, child care centres, kinders, schools, local playgrounds and hydrotherapy pools broadened my experience and understanding of the lives of these children and their families immensely.  To share the journey of some of these children and families for more than a decade has been an absolute privilege.

What is it that gets you out of bed every morning to come to work? 

It’s the same every morning!  The possibility of spending time with our very special children, and the hope of making their day just a little bit better.

What’s been a highlight during your time at VSK?

It’s hard to name just one!
A beautiful boy who needs chest physiotherapy as part of his daily routine almost always smiles through our time together.  Whether it’s because he knows he feels better afterwards, whether it’s that he enjoys the rhythmical patting on his chest, or whether it’s that he enjoys the 1 to 1 interaction we have, his smile makes my day.
Sitting on the floor with a child, practicing sitting balance, when his mum arrived she was so surprised – she didn’t know he was able to sit unsupported!
Another magical moment was assisting a very young girl lying on her side close to Olive – the therapy dog.  This little girl actively reached out to touch Olive, one of the first times she had initiated movement!  Another beautiful moment with this little girl was sitting her in a corner chair so she could play and interact, particularly with her mum.  There were a few tears of joy from several of us – previously mum had always sat behind this little girl on the floor to support her, but with the corner chair, they were able to sit face to face to play and chat.
And just this week, assisting a teenage boy to stand and walk outside in the sunshine using the TRAM.  This boy LOVES music, and with Pip’s beautiful singing and guitar playing, he managed to take some steps and then began to dance on his tip toes!

What’s your top child health or development tip?

Just keep moving whatever way you can!

How important is allied health within palliative care?

Physiotherapy can assist children to maintain whatever level of mobility, independence and function is possible at all stages of their life.  Minimising pain and deformity and ensuring comfort through supportive positioning, gentle movement and massage are priorities.

Tell us a bit about yourself

I grew up in Melbourne and feel strong ties to Very Special Kids’ location in Glenferrie Rd.  My parents were married at St George’s church across the road in 1968, and Paul and I married there also in 1995.  I’m the middle child of 3 girls, and am very proud of my 2 sisters – Anna and Sarah  – and never in a million years would I swap careers. Paul and I have three children – Meg is a Midwife, Andrew is studying Commerce/Science, and Juliette is finishing Year 11.  We have a loveable Spoodle Toby who is sure he is human, and two chickens who lay very reliably!  I love cooking and anything at all related to France, and particularly Paris.  And, I’m a very proud Collingwood supporter!
And, finally, never in a million years would I swap careers.

Rio’s Ride cycles into Very Special Kids for World Hospice Day

Ryan and Karen Fowler are on a mission help ease the heartache of other Australian families following the death of their toddler, Rio.

At just 16-months of age, Rio spent 40 days in hospital with what appeared to be gastro but the toddler rapidly became sicker, eventually being diagnosed with an extremely rare arterial condition which saw him lose circulation to his legs and kidneys, and eventually his stomach.

The couple were referred to Bear Cottage hospice in Sydney and are forever grateful for the support they received before and after Rio’s death.

Ryan, along with his brother, Chad, and friend, Lee, and followed by Karen and daughter Remy by car, are now almost half-way through a 1,900km cycle from Adelaide to Sydney, via Tasmania, to bring attention to the need for a children’s hospice in every state in Australia.

“The idea is that people in South Australia, the Northern Territory, Western Australia and Tasmania should also have somewhere to go in their toughest time,” Mr Fowler said.

Currently, there are only three children’s hospices in Australia – Very Special Kids in Victoria, Hummingbird House in Queensland and Bear Cottage in Sydney. In Perth, families and children are currently supported by not-for-profit organisation, Hannah’s House.

As part of World Hospice Day, Very Special Kids in Malvern welcomed Ryan and Karen to its children’s hospice for breakfast before they head off on the Melbourne to Yea leg of their 17-day ride.

Very Special Kids currently supports over 900 Victorian families by providing free access to respite and end-of-life care at Very Special Kids Hospice, as well as counselling and support services for the whole family.

It is 80 per cent self-funded and 20 per cent government funded. Melbourne mum, Kylie Poppins, knows first-hand how important Very Special Kids’ services are.

Her 11-year-old daughter, Steph, was diagnosed with mitochondrial disease in 2017, an incurable condition that is both regressive and unpredictable.

Very Special Kids provide counselling and support to the whole family and Steph recently had her first respite stay at the hospice just last weekend, giving Kylie and Steph’s brother, Robbie, some quality time together. Kylie faces the added challenges of caring for Steph, and supporting Robbie, on her own following the death of her husband two years ago.

Very Special Kids Chief Executive Officer Michael Wasley said Australia still has a long way to go to provide adequate hospice care in Australia.

“We are one of three children’s hospices in the country, but if you compare that to the 54 in the UK, it’s a huge difference. There’s still a significant unmet need of families we could be reaching,” he said.

Dr Jacqui Duc, Senior Medical Officer at Hummingbird House and Paediatric Palliative Care Staff Specialist, is also in Melbourne and met with the Fowler family and Very Special Kids staff, and children, for World Hospice Day.

Children’s hospice services help children with life-limiting illnesses who are not expected to reach adulthood, and provide emotional and psychosocial support at any time a family member needs.

More about Rio’s legacy: http://rioslegacy.org.au/

 

When our lives were turned outside down: Josh’s mum’s story

Penne Schwarz’s life was thrown upside down, changed forever, the day her bright and bubbly five-year-old son, Joshua, was diagnosed with terminal brain cancer. Penne is sharing her raw thoughts from diagnosis, her desperate fight to save his life, his death and to life now with the hope that families going through similar experiences will find solace in her words and to know they are not alone as they navigate life with a terminally ill child.

Part 1: Diagnosis

It was early 2013. We were just another suburban family, renovating our forever home, and had just bought a caravan to go on family adventures. I’d started a new course hoping to transition into a new career. Family meant everything to us, four kids, a dog and big dreams.

Then, every single part of our life crumbled. One word changed our lives forever. Cancer.

Our youngest child, then only five-years-old, was diagnosed with brain cancer. Not just any cancer, it was a rare cancer. Non-treatable. Incurable. He was given four months to live. That was it, all those hopes and dreams we had for our son, since the moment we discovered we were pregnant, now fell at our feet in a huge, messy, emotional heap.

This cancer’s enormity just kept knocking us deeper and deeper into a state of numbness, denial and fear. We tried to keep life normal, in fact, this was to become our new normal.

Unfortunately, so many people from our ‘old normal’ just couldn’t grasp the 24/7 whirlwind that cancer had thrown into our life. Friends we’d known for years slowly withdrew and disappeared, eventually tumble weed blew through the space once filled with friends. Cancer changes everything, forever. It obliterates families, can destroy marriages, steals dreams and leaves no resemblance of familiar life.  We sat in the cinema holding hands, quietly watching the previews for new movies coming soon, when my son gently whispered to me; “Mummy, can we come see that when it comes out”? My heart sank. It was due for release in six months. He’d be dead by then. What the heck just happened? This happens to other families, not ours. And, certainly not to our kind, gentle and loving baby boy, I thought. Amongst the tears and sobbing since cancer’s arrival into our family, we realised we couldn’t just watch the next four months pass by one day at a time. My mind kept visualising a clock counting down the days of my son’s young life. We had to do something, anything.

The oncologist, geneticists and neurosurgeon had told us there was nothing they could do, this DNA mismatch repair mechanism, which our son had inherited from both myself and my husband, complicated everything.

In the blur of being told our son had terminal cancer, my husband and I were told we were now one of 74 families in the world to have both parents and their child diagnosed with a familial cancer, CMMRD, MSH6. My husband and I both received the news that we too had a 90 per cent chance of developing cancer ourselves, with Lynch Syndrome.

I couldn’t sleep for months, not only couldn’t my mind or body relax, I felt absolutely nauseous knowing Joshua was dying one hour at a time as he slept next to me.

I’d sit in front of the computer for up to 16 hours a day searching for a cure, or anything that might save, prolong or enhance my son’s quality of life. I searched for clinical trials, treatments, hospitals, and clinics but barely anyone had heard of this cancer, let alone knew what to do for it. I sent hundreds of emails worldwide to anyone I hoped could help save our son. I literally begged for help, but it never came. The email replies were either ignored, or reiterated the rarity of this cancer’s prognosis.

“Your son is too young for this treatment.”

“We do not know the outcome of this treatment on that type of cancer.”

“The legal implications are too great to attempt.”

A parent will literally do anything for their child, especially when it comes to saving their life. I even sent emails to Ellen DeGeneres, my thinking was she’d knew a lot of people, one might be able to help. I even contacted a celebrity gangster, Mick Gatto because I knew he was friends with world famous neurosurgeon, Dr Charlie Teo. I left no stone unturned.

The world is insane, that’s what I thought. I couldn’t grasp how no one was willing to try, or do anything to save this sweet little boy. As Joshua’s mum, I couldn’t fathom why this medical world couldn’t do anything. For me it was black and white – how could it have resources that can save a child’s life, but let mine die? The words of the specialists kept repeating in my mind, they knew what couldn’t save my son. But, I wanted them to look outside of conventional thinking and medicine to find what could potentially work.

And there lay my greatest responsibility. Someone had to do something, anything, and it started with us. Team Joshua was formed, Joshua, my husband and me.  I started researching. Firstly, what was this rare cancer, what made it so rare and different from other cancer behaviour?

I knew in my gut that the answers lay outside of conventional thinking, the specialists themselves had told us they had nothing that could save, prolong or do no harm to our child. I couldn’t even pronounce most of the words I was researching, or understand the science, but I had to learn. My son’s life was in my hands, and my hands only. First, do no harm. That was at the core of everything we did.

Until I could understand this cancer, which even if I could, it would take time, and time wasn’t something we had the luxury of. Things needed to start now, this cancer was here and it wasn’t going anywhere. The first thing we changed was our lifestyle and our attitudes, we let fear take control of our thoughts. We had to view this word; cancer, differently. It became a word which represented empowerment. We were empowered in our choices, informed in our decisions and conscious of our way of life. Everything, from the food we ate, cleaning products, cooking utensils, body care products and even the water we drank was to do no harm.  We sent off pathology all over the planet. We needed to know how our son’s body was functioning, or not functioning. This was an inherited DNA mismatch repair deficiency, which I needed to know at a genetic level what this meant so I could understand it.

The raw data for his genome sequence arrived via email at 3am. I’d been waiting for weeks for this genomic data, so much hope lay in what it would reveal. Instead, it was babbled bullshit on my computer screen, and I had no idea what the heck any of it meant. Or, how to interpret it. Or, where to start. The room was only lit by the light of the screen, and I lay in the dark on the cold floor in the foetal position sobbing because it was all so overwhelming.

I was exhausted. I wasn’t a doctor. I wasn’t a scientist. I was a mother, and that’s all I wanted to be. I didn’t want this responsibility. I didn’t want any of it anymore. I was begging, pleading, praying for this all to be over. For cancer to miraculously go away, for our old life to come back.

Our lives were 100 per cent committed to saving our son. From the moment we all woke, to the way we prepared for sleep, everything was created to encourage life, and aliveness.

This is part one of four of Penne’s story, continue to follow us as  we learn more.

If you would like professional support following the death of your child, find out more about how can help and how to get in touch. https://www.vsk.org.au/family-services/

Meet our Family Support Team: Rachel Ficinus

Tell us about what you do at VSK

I am the Family Support Team Manager

What’s unique about your role?

My role is unique because VSK is unique and this role does not exist anywhere else. My role allows me to bring the voice of VSK families and those who work directly with the families into all the non-clinical aspects of the organisation and ensure that decisions being made have the family perspective included.

What do you love about your role?

That I have the opportunity to be involved in all aspects of the organisation, while always keeping in touch with those who work directly with the families supported by VSK. Watching the Family Support Team work so tirelessly with families who have a child with a life-threatening condition, or whose child has died is a humbling experience and one that I am grateful to witness and support through my role.

What does a usual day look like?

It’s quite eclectic as I wear many different hats throughout the day. It usually consists of many meetings that require a different level of knowledge or perspective dependant on the audience, i.e. fundraising, media, hospice. I try to schedule my days with coffee and lunch breaks – the former is a must – and ensure that the family support team have the opportunity to talk with me when needed.

What’s your background prior to VSK?

I am a registered psychologist and have been practicing as a psychologist for the past 10 years. I worked in public psychiatry in regional Victoria – Portland and Ballarat – and then moved back to Melbourne to work with a foster care agency called Waverley Emergency Adolescent Care, where I was a counsellor for young people and families in the City of Monash council. I completed my Masters in Psychology (Educational and Developmental) at Monash University in 2012.

What’s something that other health professionals might not know about your role?

Although I am not 100% client facing in my current role, it is my experience and knowledge from my experience working in mental health that helps me understanding the challenges that are being faced by the families supported by VSK. This then helps inform the clinical practice implemented by the team across Victoria.

What is it that gets you out of bed every morning to come to work?

My children!!

What’s been a highlight during your time at VSK?

I think working with such talented and committed individuals. There is such an emotional component to the work conducted at VSK and it attracts staff who are here to give their all to the mission of the organisation. It creates a dynamic and exciting working environment that provides all the families engaged with VSK with an unique service not offered anywhere else in Australia.

What’s your top tip to those who have had a tough time or day?

Being kind to yourself. Finding a way to disconnect from work that provides a break from the demands of the day, allowing you to reconnect with family/friends and your life outside of work. For me, it’s the complete distraction provided by my children and once they are in bed, it’s a glass of wine and chilling out on the couch watching TV!

What is something about the grief process that people might not know?

That it’s ongoing, there is no cut off period where you now need to feel better. Your heart grows around the grief, allowing us to move along in our life whilst always holding on to the reminder of what has been lost.

Tell us a bit about yourself.

I grew up in Melbourne and attended Siena College and Deakin University. My parents ran the St Andrew’s General Store while I was in secondary school and have a great understanding of how consuming a family business can be. I have four brothers, one sister, four sisters in law, one brother in law and 10 nieces and nephews. My first job was working at the Donut Diner at Box Hill Central.  I met my husband while I was living in Portland and he followed me to Ballarat and back to Melbourne! I have two children (Molly and Archie) and have recently returned to VSK from maternity leave – so my life is now much busier! We have a beautiful Saint Bernard dog called Harry who eats more than the whole family.