A CURE; FOR LIFE; FOR RESEARCH
When our 16 year old son Erik was first diagnosed with Bone Cancer we were in shock as we organised for a biopsy while all sorts of questions ran through our minds. At the appointment with the Doctors to find out the result of the biopsy we were told Erik had an Osteosarcoma in his left distal femur. That night we googled Osteosarcoma and came up with very little information and what we did find, was medical papers. We needed to know how many people survived this cancer and what was going to happen to our son. It was a confusing and worrying time as our lives changed. When Erik started treatment we had to learn about Scans; CT Scan, MRI, PET and after the biopsy; the pathology report then the treatment plan of chemotherapy, surgery, more chemotherapy and the side effects. The language the Doctors used was foreign to us and the word Metastasis was not used in the early stages. We now know our shock, confusion and coping elevated us to hightened levels of stress which remained throughout Erik's treatment and was cyclic. We also found that what was happening to us was normal and others felt the same way.
Awareness and access to information. This is an important part of what we do. There are many different types of Sarcomas and the information on them varies which is why we value your story and information about Sarcomas.
Research for Sarcomas has plateaued for over 30 years in
Support for Sarcoma patients and their families. We have learnt a great deal about many sarcoma patients and their families who just like us, faced a lack of adequate information and support, access to medical care and financial strain as lives are turned upside down.
Sarcoma Journeys. Whether you are a patient, family member, friend or one of the medical team each of us is a part of the journey. Erik’s Journey was published by us on our website in 2007 and 2008. We initially did this to inform family members and friends, particularly overseas of Erik’s progress. Erik's journey became a resource for the medical profession and valuable information for those commencing their cancer journey.
Early Awareness Symptoms. Erik’s Alkaline Phosphatase level was 761 when the tumour in his leg was 13cm. This test was ordered by our General Practitioner (GP) who was not looking for bone cancer, but asked for the blood test to check for abnormalities. Alkaline phosphate is an enzyme that increases when a tumour causes production of abnormal bone tissue. The average level of Alkaline Phosphatase for Erik at his age (16) should have been between 52 – 171. We have been sending this awareness message out to thousands of people in order to tell people about this early symptom we discovered through our GP’s actions. If your child has an ongoing pain in or around the bones and you are told that it could be a sports injury or growing pains, then this simple blood test can put your mind at ease.
“I want to encourage all students and their parents to consider a yearly blood test when they go for a check-up with their doctor” said Louise Markus MP, Federal member, “awareness and early detection are vital to combating many diseases such as Sarcomas”. Hawkesbury Gazette, Wednesday, June 30, 2010
When we told the people who are researching Sarcomas about Erik's elevated Alkaline Phosphatase level they were shocked, they admitted that they had not thought of this, they are looking for a genetic connection rather than early symptoms and diagnosis.
Help us build a database which may give our children a fighting chance with this terrible disease. Tell us your story, what did your loved one's blood test show? What was elevated and for which Sarcoma; i.e.
Help to Make It Happen for Sarcomas; Bone & Connective Tissue Cancers.
The EHS Foundation won an Australia Day Award