In my lifetime and not in the far too distance future I hope I will be living in a period where cancer is only known as a zodiac sign. Cancer would be part of our history in stories we were told about how it was in days long ago. Families won’t be torn apart by the loss of loved ones and we’d have a new generation of people who get to live to a ripe old age and pass away with dignity by saying goodnight to love ones then falling into a blissful lifelong sleep and slip away during the night. This futuristic breakthrough won’t bring Jacob back but it would make us feel like we’ve payed it forward and that he’s done his bit in finding a cure for the cancer that took him from us.

Jacob was diagnosed with Ewing’s Sarcoma in Aug ‘14 at 19 years of age. Treatment for this supposedly rare cancer has not changed in over 50 years. This type of cancer targets youth and young adults between the ages of 12-25years. The amounts of chemotherapy and radiation they receive were at levels and quantities that an adult would receive. Young, growing bodies should be given unique doses as the difference between the age groups (youth, young adult and adult) are vast. More research for trials and cures are greatly needed. I’m sure the way to go is along the lines of immunotherapy in which your own body and cells works it’s magic in curing itself. Jacob had his own stem cells taken out in the case of a relapse after being in a long period of remission. But he was never in the situation where this was possible. He relapsed with the disease taking over at a nasty accelerated rate. We pool money religiously into fundraising events to hopefully find cures but the rare cancers never see a cent, the more well known, highly advertised cancers get the exposure needed. People world wide are being cured from Leukaemia, breast cancer, melanoma and bowel cancer. Yet the statistics of Ewing’s Sarcoma are low. If a person is diagnosed with metastatic Ewing’s (meaning that it has spread to other areas) 25-30% of people are alive in 5 years time after treatment. We always thought that Jacob would be in that percentage. Someone had to be included in those statistics and why shouldn’t it have been Jacob. It was the type of positivity we needed to get him through the most horrible time in his young life.

We need a well known member of the public to take on an advocate role for our youth. Someone in the public eye to be a spokesperson to share important knowledge to medical teams and schools about Sarcoma awareness. Someone that people look up too, particularly the youth, the vulnerable cluster of humanity this disease targets. I have a few people in mind – Beau Ryan and Matty Johns are prominent figures in the sporting industry who would suit the role as they are already heroes to many youth and young adults today. If they begin to speak of the symptoms associated with sarcoma in detail with messages that will be heard and absorbed in young impressionable minds, treatments may begin a lot sooner and more lives will be saved as they are often misdiagnosed with sporting injuries instead of something more sinister. Time is critical.

Many local medical practitioners have never heard of the many types of sarcoma and what it’s doing to our future generations and are often in a position where it’s in the ‘too hard basket’ to deal with and they refer the patient to someone else. Wouldn’t it be wonderful if we had these advocates for our youth who shared knowledge and wise words to targeted audiences so they could live out their dreams and live long healthy lives they deserve.

Beau Ryan would be the better choice for me as he went to my children’s high school, lived in our neighbourhood, my husband knows his father both socially and professionally and he was a player in my favourite rugby league team the Cronulla Sharks and Jacob’s favourite team West Tigers.

Sarcoma awareness colour is yellow, breast cancer is pink, black for melanoma, orange for leukaemia, just to name a few – all the colours of the rainbow represent a different cancer. With a cure for all the cancers in the world the impression of a rainbow will be different. Without cancer we will be like a rainbow – live a colourful life, be an inspiration, bring unexpected joy, see beauty in life’s curves and be someone to look up to.