by S Lowe 5THE FM newsonline wattlerangenow
When Nangwarry parents Tristenne Isaacson and Bradley Jackway welcomed their baby boy Ryan into their lives, nothing could have prepared them for what would be ahead. He was born a healthy baby and grew into a happy little boy until he was just 5 years old when he was diagnosed with a rare brain cancer and soon the phrase, ‘just because it’s rare doesn’t mean it’s not there’ became his mum’s catch phrase when describing her son’s condition.
They were looking forward to Christmas and New Year in 2007, not knowing their life, their family’s and that of their son’s would dramatically change before the holidays were over. On Christmas Day she noticed her 5 year old son Ryan was shaking and then over the next 2 or 3 days he had difficulty holding his spoon and also walking, they took him to the Penola Hospital. There was no doctor on duty but the nurse recognised there was a problem that needed immediate attention and he was transported to Mt Gambier Hospital by ambulance. They stayed overnight where his condition worsened. Tristenne went home briefly to shower and received the call that the test results had come back and her son had a brain tumour. The Royal Flying Doctor Service was in Mt Gambier and he would be on it. She had 15 minutes to meet them at the RFDS plane.
Tristenne could only think the worst as they flew to Adelaide and her fear of flying didn’t help. Ryan grasped her hand saying: “It will be alright Mum.”
“He was comforting me when I should be comforting him,” she said.
Immediately after reaching Adelaide he had an MRI and less than an hour later they had the results and surgery was planned for the following day, but were told to be prepared; there was no guarantee that Ryan would walk or talk again. He had a particularly aggressive cancer of the brain called premature neuro ectodermal medulla blastoma.
“I was standing there among doctors, nurses, oncologists being told these things about my son, words I’d never heard before and I suddenly realised I had no shoes on!” “I had just dashed out of the shower into the car with no thought for shoes.”
“The next day I realised I didn’t have a change of clothes, I only had what I had left the house with..”
Tristenne said she has faith and when you are faced with something like this, it’s the one thing you turn too. She did, and said she sometimes wonders if that’s what made the difference because he was very ill and they were not given an guarantees he’d be alright.
“I quickly became a MUM-cologist” meaning I began to understand terminology and phrases and could converse with the doctors about my son’s condition.”
Surgery took 4 hours and the surgeon said they had removed a 15 cm tumour from the front of Ryan’s brain area. It had calcified part of the skull area. He was cut from ear to ear over his head. It took days for Ryan to stabilise and he didn’t like the bandages. The first time he felt hungry he asked for chicken nuggets!.
“He had a problem with fluid build up and had it drained 3 times. One doctor told us we may only have 18 months left with him but another doctor told us there was no way of knowing.”
“The post also got infected and fell out so he had some troubles in recovery.”
“It was an aggressive cancer so he has chemo and radiation. It was a strong chemo too; it had to be.”
After 4 weeks healing from the surgery, the radiation began and Ryan had 31 doses on weekdays at the Royal Adelaide Hospital. He then received chemo at the Women’s and Children’s Hospital over a 6 month period.
Tristenne and Bradley and daughter Rayna, stayed at the Ronald McDonald House which, she said, was a big help. “We are country people, we were scared of what was happening to Ryan but also scared to be in a city with so many people we didn’t know. Rayna often slept on a stretcher by her brother’s bed while we sat with him. It was so good to have somewhere to stay and be together.”
“When a child is as ill as Ryan was, the other child can be left out so we had to make sure we spent time with her too; she was just 7 at the time.”
“We were given a folder of information at the hospital, to prepare us for the journey we were about to take. It didn’t seem much help then but as time went on it began to makes sense and helped us understand what was happening.”
“We couldn’t get the all clear to bring Ryan home until he was strong enough to resist infection because the immunity is compromised after such treatments but he came home on my birthday so that was the best present of all.”
Holden Racing Car driver Garth Tinder heard about Ryan and arranged for the whole family to go to the Clipsal 500 a few years ago much to Ryan’s delight. He was allowed in the pit among the cars and had a great day chatting with the drivers. Tristenne said they were grateful to Garth for his interest in Ryan, it was a very happy day for him and the whole family she said.
Tristenne and Bradley settled back into life at Nangwarry with Rayna and Ryan and passed the 5 years tumour-free mile-stone for Ryan. Three and a half years ago had a gorgeous baby girl Renae who has Downs Syndrome and is a joyful blonde bobbed-haired bundle of smiles and joy in their lives.
Ryan is back at school in Nangwarry but will start at Tennyson Woods College next year. He still has seizures every 2 months or so; he needs growth hormones, medication for his thyroid and needs medication to sleep as well as eyesight and pituitory and some behavioural problems. He missed out on some of the things others his age do, but he is very good at gaming and loves movies and is hoping for a future in this field. Because his condition now is classified as physical injury, he is only eligible for minimal additional help with learning; he will take the subjects at Tennyson he can and have additional lessons outside of school.
Ryan is 13 now and even though he passed the 5 year all clear mark he still has yearly scans which builds up a lot of anxiety in mum Tristenne; she calls it ‘scan-xiety’. “As a mother I’m never sure and probably never will be I don’t think.”
Funding for research is minimal so Tristenne began fundraising for childhood cancer last year after seeing how many children are affected and has a family fun day planned for Sunday 27th September at the Nangwarry Football Club beginning at 12-00 pm with a BBQ. There will be plenty to entertain the whole family with a unique car display, a jumping castle, face painting, stalls, pony rides, a grand raffle with a cash prize. It is a free entry event but money raised from the rides and raffle will be donated to childhood cancer research. There are no corporate sponsors for this event and Tristan has bought raffle books and prizes herself, partner Bradley is providing and cooking the BBQ and together they are funding the day.
Last January Tristenne held a can day and she is always looking for ways to fundraise for research into childhood cancer.
“We need funding to re-search into this rare cancer in children.”
………….. ‘just because it’s rare doesn’t mean it’s not there’, says Tristenne .
Before and after photos of Ryan’s brain
More information about childhood cancer can be found on the following link: http://www.pnetcancerfoundation.com/Primitive Neuroectodermal Tumors of the Central Nervous System (CNS PNET) are identified as highly aggressive large tumors that are found in the brain and spine.
Symptoms of CNS-PNET
Symptoms vary according to the location of the tumor and generally include: headaches, vomiting, fatigue, lethargy, nausea, seizures, behavioural or personality changes, unexplained weight loss or weight gain, weakness on one side of the body.
All photos were kindly provided by Tristenne Issaacson.