The diagnosis of cancer is devastating at any age.
Crystal Lee Johnson had her whole life to look forward to. Described as vivacious, friendly and outgoing, she was never one to shy away. But after her diagnosis of Malignant Peripheral Nerve Sheath Tumour, Crystal's life was cut short. KIMBERLEY PRICE talks to her parents Jo and Trevor who are helping families cope when one of the worst cards in life is dealt.
Crystal Lee Johnson was only 16 when she was told she had a Malignant Peripheral Nerve Sheath Tumour (MPNST) and she wouldn't finish high school.
She was 19 when she passed away in January.
Despite their pain, Crystal's parents Jo Sinclair and Trevor Holcombe are doing what they can to create a lasting legacy for their daughter through the Crystal Lee Foundation.
"The idea for the foundation began two years ago when Crystal was still alive. She was frightened of people forgetting her and so we started talking and getting the ball rolling," Jo said.
"The foundation is about the education and awareness that there is young people nearing the end of their life who deserve to be treated in an age-appropriate way.
"It's also about supporting the young person's parents and the rest of the family through this devastating period and providing bereavement support."
Jo and Trevor fondly remember their daughter as a vivacious, loud, caring and warm young woman who treated everybody equally and greeted everyone with a hug.
After complaining of knee pain for 12 months and it being treated as growing pains, Crystal suddenly started having bouts of stomach pain and an x-ray revealed she had a 16-centimetre tumour in her abdomen that had attached to the base of her spine.
Four days before Christmas in 2015 Crystal and her parents were given the diagnosis of MPNST which effects only one in one million people worldwide.
Crystal's parents made changes for their daughter to live as she had always lived - surrounded by friends and family in a comfortable and colourful environment.
The family moved from their home in Port Fairy to Warrnambool to be close to Crystal's school at Emmanuel College and South West Healthcare. The move meant Crystal was able to go to school on the days where she felt able and her friends and teachers were able to come around and visit her.
But the transition from the Royal Children's Hospital and the Peter McCallum Cancer Centre in Melbourne to Warrnambool was not an easy one.
This shift and the need for greater services in regional areas are important gaps Jo and Trevor feel obliged to close through the Crystal Lee Foundation.
"If Crystal was 17 or younger she would've been looked after by the paediatric ward nursing staff at home for her palliative care needs," Jo said.
"Instead we were cared for by the community palliative care unit and home but at the hospital she was in the paediatric ward. Given Crystal's positive relationship with the paediatric nurses, it would have been nicer for her to have them continue their support while she was at home.
"There were a lot of different people coming in and out of our lives and though the community palliative care team were lovely and caring nurses and we know that it was difficult for them too as Crystal was very young, when you're not a child and you're not an adult there's a big gap in care."
Trevor mirrored his wife's sentiments.
"When you move out of the major centres the services get less and less. When we were in Melbourne the hospitals had age-appropriate holistic care for Crystal, as well as for us," he said.
"(It was) simple things like music therapy and art therapy in a beautiful youth space for Crystal to relax in when having treatment in Melbourne.
"From our experience you tend to lose sight of the everyday things and the little things suddenly become the big things."
The couple hopes the Crystal Lee Foundation will be a pillar of support for families of young people aged between 13 and 24 who are nearing the end of their lives.
Education about young people suffering is another aim of the foundation in an attempt to normalise the young person's life and the people surrounding them.
The foundation will also act as a driving force for change in palliative care services to young adults and is hoping to see an even spread of services for families transitioning from Melbourne to their regional Victorian homes.
"Our dream for Crystal's foundation is to have a youth space at the hospital, or the cancer centre, or just some nice space outside of a clinical setting where our young people can go to be supported and (have) just a safe place to hang out in," Trevor said.
"We endeavour into the future to have a music therapist and an art therapist join our foundation.
"We would also like to support a palliative care room at South West Healthcare to be decorated in a warm, welcoming way mirroring a home environment if a young person was not able to be at home at the end of their life."
Crystal's battle with MPNST is something Jo and Trevor wouldn't wish upon their worst enemy and their family.
Through the foundation they hope to ease the load on families in situations similar to their own.
"There's no nice word for what Crystal faced, it's all wrong; the death of a child is wrong," Jo said.
"I couldn't accept what was happening. I just kept thinking 'this isn't real, this isn't our lives, I'm going to watch Crystal travel the world and enjoy life'.
"You're totally numb to what is happening around you. I remember going to the supermarket and seeing everyone and forgetting everything I needed and panicking thinking 'I can't go in there'.
"You're always acutely stressed. You're just surviving. You are just putting one foot in front of the other every second of every day. It's unpredictable, you never know what's going to happen.
"Towards the end of Crystals life, I was thinking, please don't take her from us.
"It's the most intense experience."
Jo and Trevor know the work of the foundation will be difficult and a lot of the work depends entirely on what each young person and their family needs, but they hope to lift the burden in some small way to help ease the pain that end of life brings upon a family.
"Cancer strips away your dignity and your energy. You lose all control. It's intrusive of every aspect of your life," Jo said.
"The death of a child is very painful no matter what age, it's not the order, it's not meant to be this way, it's meant to be the other way.
"Your role as a parent is to help, love, guide and nurture and make them all better again when they're sick.
"When you can't do that, it's devastating.
"As a foundation, we want to meet families with where they're at. We want to help them with everyday things on their terms.
"You can't ignore what is going to happen but we as a foundation want to meet the living needs of a person."
Crystal passed away on January 14 this year. Jo and Trevor thanked their community palliative care volunteer and hospice volunteer, Very Special Kids family support and their friends and family.
The Crystal Lee Foundation will launch at The Wharf @ Port Fairy on October 4.
For more information head to crystallee.org
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