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Dec 2017
About Sarcoma  > Sarcoma Stories

Sarcoma Journeys

While we recognize that each sarcoma journey is an intensely personal experience, increasing funding for research requires public commitment and investment. We invite you to submit your thoughts about your personal sarcoma journey. These stories provide hope, solace, and support to others facing the challenge of sarcoma as well as inspiration to Kick Sarcoma!

Tyler’s Story
Kahlan’s Story
Chris's Story

Tyler’s Story

Tyler was just your average toddler. In January 2010, we noticed a small lump on his lower back. About the size of a 20c piece. My first thought was “we’re in trouble”. We took him to the doctors the next day and they weren’t too concerned at all. They said it was possibly a bruise in his muscle from a fall. Over the next four months, the lump grew to the size of an avocado. We’d been to numerous doctors’ visits and had ultrasounds but no one knew what it was. We were finally sent to a paediatrician at the Cairns Base Hospital. It just so happened that the Oncology Team from the Royal Children’s Hospital in Brisbane were up that day. They knew the lump was nasty and Tyler and I were on a plane the next morning. After a week of horrendous tests, he was diagnosed with Rhabdomyosarcoma, a malignant cancer of the connective tissues. 

It was his second birthday. He endured 43 weeks of chemotherapy which made him very sick. He had 6 weeks of radiation – Monday to Friday – under a general anaesthetic – which gave him terrible burns. He lost his hair and his appetite. But the hardest part was being 1800km away from home. Tyler missed his daddy and his big brother Caleb. So did I. And they missed us just as much. In February 2011, Tyler received his last chemo. He had his MRI and CT scans in March and was officially in remission. He still goes back to Brisbane every 3 months for his MRI and CT scans – which need to be done under a general anaesthetic – and eventually, this will be down to every 6 months. He is such a character and so very funny. Tyler is our cheeky little man.

Kahlan’s Story

When Kahlan was a little over 6 months old we had just got home from a holiday to visit my parents. Within a week of being back home I noticed that a small lump had appeared on Kahlans back near the spine up near her shoulder blades. After a few days I took her to a doctor who after looking at her for just a minute gave me a referral for an ultrasound but told me I wouldn't need it as it was just fluid or a bruise and would go away on its own within a couple of weeks. Just in case I booked the ultrasound anyway but could not get one for 25 days (26th August 2011). During this time Kahlan stopped using her legs so she wasn't kicking in the bath and when I would put her on the floor she would just lay there and also during this time the lump was still growing. the ultrasound couldn't show what it was just that it looked like it was in the muscle. At yet another doctors appointment after mentioning that Kahlans legs weren't working the doctor said that she was just lazy and if it was to do with the lump the lump would be lower but he still referred me to a pediatrician in Bunbury for and MRI because he couldn't tell what it was from the ultrasound.  

On the 1st September 2011 at 7 and a half months old we travelled to Bunbury for the MRI and afterwards the paediatrician took me aside and said that she had a tumor and we would be flown to PMH that afternoon. On arrival a surgen looked at Kahlan and we were told that the tumor was too far advanced to consider surgery. Later that night my partner flew in from Esperance to be with us. The next day Kahlan had 6 procedures including biopsy, a pick line put in, CT etc. when we spoke to the oncologist she told us she thought it was neurobalstoma and went through everything that was coming up. That night Friday 2 September 2011 Kahlan started emergency chemo to stop the growth of the tumor. When the results from her tests came back we discovered that it wasn't neuroblastoma but a rare teenage boys cancer called Ewings PNET (Primitive Neuroectodermal Tumor). We were told that the Cancer had grown inside the bones of her spine and pushed against and her spinal cord flattening it against the bone, hence the loss of use of her legs. At first because there is so little known about this cancer in children of her age radiation was not an option so we were told that if after the first 3months of chemo if the tumor didnt shrink enough then we would take her home. The team at PMH eventually found that if she didn't have radiation that even if the chemo worked and got rid of it it would eventually come back and be practically untreatable so it was decided that she would have the radiation in Brisbane. Since then we have been on 5 different chemos in fortnightly rotations and had to travel to Brisbane for 30 rounds of Tomotherapy Radiation, have come back to Perth and are having still more chemo.  

Thankfully at her 3 month scans it was discovered that the tumor had shrunk to 7mm by 10mm so Kahlan was responding really well and then 6 weeks post radiation MRI we have had the wonderful new that she is now cancer free. We still have to have chemo until September and then the monthly scans etc as well as extensive long term treatment with the spinal team in regards to her still not having use of  her legs. From a tumor that was from her t2 to her t10 and had then cracked a vertebrae and grown into a golf ball sized lump to nothing, I am so proud of my little girl. she has been so brave and happy though it all and I know she will be though all that is still to come.

Chris's Story

In March this year, Chris Pelow was diagnosed with synovial sarcoma in his foot. Unfortunately, as you know, there is only one form of treatment, and Chris's lower leg was amputated within a week of diagnosis. Chris is 24 years old and he joined Sydney University Hockey Club from Ireland, where he had previously represented his country. He quickly became an important and very popular member of the club. Chris is only young and, despite his battle with cancer and being away from his family, has decided to stay in Australia to continue living and working. His positive outlook on life and the way he has got back in to his routine after the operation has been an real inspiration to everyone who knows him. He is an incredible person.