Crutch 4 Sarcoma is a fresh, young and international movement aiming to raise awareness of sarcoma (the forgotten cancer). Join Dom and Lachy in the fight against Sarcoma, the forgotten cancer. TO DONATE: kicksarcoma.org

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Gillian

To see all the photos from the shoot, click here.

C4S: Tell us a bit about yourself and your story. 

Gillian: I diagnosed with Osteosarcoma in my spine, which is really, really rare. Most cases with bone cancer commonly occur at the shoulder, elbow or knees. I’ve had multiple relapses along the way, but the biggest blow happened January this year. The cancer spread around my spinal cord, making me paraplegic from waist down. Although there was a chance it could happen, none of us actually thought it would. I completed my studies in School Of The Arts just last year, and was getting ready to head off to Japan to pursue my studies in Product Design at the Kyoto University of Art and Design. But, my plans were put to a halt because of the latest predicament. I’m now taking a gap year to hopefully recover before applying to anymore art institutions.

C4S: How old were you when you were diagnosed with sarcoma? When did you realise something was wrong?

Gillian: It was 2009 and I was 12 years old at that time. I’d just completed my PSLE. I was having pain around my left abdomen, but the doctor just passed it off as Stress-Induced Gastritis. I remember tolerating the pain for about 3 months until it was diagnosed with Osteosarcoma.

C4S: How did your parents and siblings respond to the news? 

Gillian: They were undoubtedly devastated of course, no one would have thought it was cancer.

C4S: How was the treatment? What were your side effects?

Gillian: The treatment was harsh. My chemotherapy cycles lasted about a year. There were many side effects; the usual being nausea, pain, loss of appetite, the spiralling of blood count, infections and the unavoidable hair loss. 

C4S: What is your best memory at hospital?

Gillian: There were art and music therapy sessions to keep us occupied and distracted while we were having our chemo, so that was quite fun!

C4S: What was the hardest part of the journey? 

Gillian: Hmm, it would have to be missing out on a lot of things. But it wasn’t so bad, because I also had time for myself to think and reflect.

C4S: Did you have to stop school? 

Gillian: Yup, I didn’t attend school for the whole year. When I finally completed my treatment course, I had to join the year below.  

C4S: Did you make any friends during your treatment? Did that help you cope?

Gillian: I met a few patients during my frequent stays in the hospital, one of whom is my closest friend now. Definitely! Having someone going through similar struggles really bridged many gaps because you can actually relate to each other. It helped elevate a lot of internal struggles. 

C4S: Were friends and family crucial for your recovery?

Gillian: Yes of course, they were my pillar of strength and encouragement. People don’t often talk about it but having a closely knitted support group consisting of people who really care about you can ease a lot of physical and emotional burden.

C4S: You’re still going through so much. What’s the latest regarding your case? 

Gillian: Yeah well, cancer really does suck. Despite major surgeries to get rid of the bad cells, they keep sticking around. The latest scans show that the cancer is still spreading around the spine, and there’s nothing much I can do since I’ve taken most of the strong chemotherapy drugs and radiation. I’m currently taking oral chemo to suppress and decrease the growth of the cancer, but my family and I are really hoping that my case is eligible for the Carbon-Ion Radiation Therapy in Japan. It’s known for treating various complex cancers including several types of sarcomas.

C4S: You’re an artist. Does art help you cope? 

Gillian: People would guess so, but not really. As an artist, people assume that art is a medium for me to cope. I do draw and make things in my free time. However, coping with cancer is more of a mental affair that I have to go through everyday, and I don’t intend to glamourise it. Simple entertainment like watching a series or a show usually distracts me from what’s on my mind. Everyone has their own way of coping with their own struggles.

C4S: Who inspires you? 

Gillian: I don’t really have just one person I look up to. I tend to change interest in people very fast. But the qualities in people that I find inspiring include being triumphant in suffering and braving through all odds to achieve their goals despite the limitations that set them apart.

C4S: Do you think you see life in a different perspective compared to most people? 

Gillian: Having gone through what others might have not certainly puts me in a different position, but I think everyone has their own unique pair of eyes. 

C4S: If you could give advice to other families battling sarcoma, what would it be? 

Gillian: Be as open as you can around each other because bottling in your pain and troubles won’t do anyone good. Being chained by your fears is not healthy either. Having cancer is a lifelong journey, and though we need to be careful and wary of the certain things that pose as a risk, my family and I try our best to work our way around it and just live our lives as we would want to.

A VERY BIG THANK YOU TO GILLIAN AND TRICIA FOR MAKING THIS PROJECT HAPPEN 

The George Mark Children’s House

Kathy Hull is the founder of the George Mark Children’s House, an incredible home dedicated to terminally ill children and their families. We were fortunate enough to visit the House on our recent trip to California, thanks to the kindness and generosity of the staff.

Kathy is currently a paediatric psychologist practising in Oakland, California. She practiced for a number of years in paediatric oncology wards and intensive care units, continuously exposed to the pain and suffering of children and their families. As she states in her TED talk, during this time, she became increasingly aware of the negative environment in which these patients were being treated. For the most unfortunate paediatric cases, this harsh environment would be the last place on earth these children would see before their lives came to an end. The fluorescent lighting, the unnatural brightness, the constant sound of alarm bells, elevator and monitor beeps…these shouldn’t have to be the last sounds and sights a child sees at the end of his/her life. Fortunately for many terminal children, Kathy saw the discrepancy between caring to cure, and the care that is needed at the end of these children’s short lives.

In 2004, the George Mark Children’s House was established: a beautiful, cozy and homely residence spread over five acres for terminally ill children and their families…one that resonates feelings of homeliness, whilst still offering the comfort and support from medical professionals if needed. Surprisingly, the G.M. Children’s House was the first pediatric palliative care centre founded in the USA (interestingly, there are several such care homes of them in Canada, Germany and the UK).

http://www.delmonteelectric.com/wp-content/uploads/2012/04/George-Mark-Childrens-House-1.jpg

The House encompasses 8 patient rooms with family suites. No scary machines or tubes hang down from the walls near the bed frames, no harsh fluorescent lighting, no white walls and VCT flooring, and not one ‘bleep’ to be heard within the entire home. On the contrary, the patient rooms are painted in the brightest of colours, each with its individual theme: Sea Breeze, Jungle Safari and more. They all feature enormous French-style windows that look out onto the home’s peaceful and charming garden. A daybed is also found in each room, for parents, friends or for any sleepovers.

http://georgemark.org/about-us/life-at-the-house/childrens-bedrooms/

http://georgemark.org/about-us/life-at-the-house/childrens-bedrooms/

As we visited different parts of the estate, it was clear that every single feature has been carefully thought through. The stone path in the garden is smooth and gently meandering, giving the impression of strolling in a park, and is ideal for wheelchairs. The hedges are cut to about a metre from the ground, so that wheelchair bound children are able to see beyond the plants. When it comes to eating, a personal chef, Ruth, is at every family’s disposal. She’ll cook whatever the patient and their family and friends desire. Another personal favourite was the Sensory Room, dedicated to arouse a child’s senses through special light effects, gentle sounds, tactile entertainment and more. As explained by the staff, these sensory experiences provide calmness and relaxation for the children. Yet perhaps the most remarkable feature of the George Mark Children’s House is that everything is free of charge.

It doesn’t end there…George Mark Children’s House also organise a number of events designed for the children, for extra fun, joy and excitement: from movie nights, to gardening ventures, to larger scale events for families and friends to attend, such as Pumpkin Day during Fall. The creativity, compassion and selfnessness of the staff is nothing short of inspiring.

Kathy Hull has created an environment that every terminal child should have the opportunity to experience at the end of their short lives. A fun, young-spirited, colourful, bright, peaceful place where children and their families can enjoy moments of relaxation, of privacy and of joy. To have been able to visit this incredible home and to see the compassion and thought that went into creating such a special place for terminally ill children, has truly been an honour for Crutch4Sarcoma. We can only dream to participate in the creation of many more children’s homes across the globe in the future.

 

Crutch4Sarcoma’s founder, Dominique, at the end of the tour

 

A VERY WARM THANK YOU TO KEN SOMMER FOR TAKING THE TIME TO SHOW US AROUND AND MAKING US FEEL SO WELCOME. 

About Crutch 4 Sarcoma
Crutch 4 Sarcoma is a fresh, young and international movement aiming to raise awareness of sarcoma (the forgotten cancer). Join Dom and Lachy in the fight against Sarcoma, the forgotten cancer. TO DONATE: kicksarcoma.org
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