WattleRangeNow

Local News at Your Fingertips


Just because it’s rare doesn’t mean it’s not there!

Ryan now

Ryan Bradley brain tumour survivor at the 5 year tumour-free mark and counting

 

 

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.

Ryan babyA healthy baby Ryan

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.”

Ryan after surgery

Ryan after surgery but before treatment – on a good day

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.”

Ryan and sister

Rayna and Ryan at the Zoo

 

“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.”

“It’s on-going!”

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.

 

 

 


Kincraig GP’s thank supportive community

 

kincraig

Kincraig Medical Clinic Doctors Front: Dr Michaela Malek (registrar) Dr Jeff Taylor (practice partner) Back: Dr Tony Cohen (practice partner) Dr Nicholas Lye (registrar) Dr Ron Wallingford (registrar) Dr Pulak Sarker (practice partner)

by S Lowe 5THE FM’S newsonline wattlerangenow

Kincraig Medical Clinic GP’s has been in difficult, protracted, contractual negotiations with Country Health SA for some weeks and have been in a lock-out situation from the Naracoorte Hospital for 25 days; a situation that several other clinics have potentially faced, including Millicent Medical Clinic, Penola, and Kangaroo Island.  Victor Harbour’s difficult contractual negotiations with CHSA resulted in a permanent lock out so Naracoorte patients will be relieved to hear that the local GP’s will be back at work in the hospital early next week. In a joint statement last night both parties agreed that a standard contract had been signed. Kincraig Medical Clinic have released a statement this afternoon saying thankyou to their community and supporters as they stood on what they call important principles. Their statement in full follows:-

“DOCTORS at the Kincraig Medical Clinic would like to thank our community and supporters for their understanding of our stand on the important principles behind the recent lock –out imposed upon us by Country Health SA.

Which issues still remain?

The new Royal Adelaide Hospital is costing $1 million a day in interest and with the two-month delay next year it is going to cost an extra $835,000 per day in interest. Therefore Country Health SA has had its budget reduced as well as being advised to find “efficiencies”. This translates to cost-cutting by way of reducing contracts, cancelling elective theatre and extending waiting lists. Also affected are ambulance services and nursing levels at our hospitals.

Our position has been that a mutually acceptable contract is vital for all parties and most importantly for patients and essential tool for attraction and retention of skilled doctors, both now and into the future.

Research shows country people are at increased risk of adverse medical outcomes due to lack of existing services in local areas, we cannot accept any further compromise which would undermine regional services and fail to meet the SA Health mandated standards of care for patients.

Regardless of whether CHSA follow SA Health mandate, KMC as part of our commitment to care for our patients will provide a fourth doctor at caesarean sections despite not being funded for a fourth on call.

KMC is proud that it has under gone principled negotiations in good faith and done our best to raise important issues of sustainable quality health care for Naracoorte & surrounding district. Likewise we are also proud of how far the discussion about standards/mandates and the inequality for rural patients went, being discussed in parliament on Wednesday.

We are committed to continuing to service Naracoorte and our community for many years to come.

“You may wish to hear a detailed explanation of events as recently broadcast on ABC Radio South East. to do so just click on the link below and press on the bar marked GRAHAM, TAYLOR AUDIO”

http://blogs.abc.net.au/sa/2015/09/naracoorte-doctors-settle-dispute-with-country-health-sa.html”

** 5THE FM/ wattlerangenow.com.au have invited CHSA to respond and will update when it is available


Kincraig release full statement of negotiations

kincraig

Kincraig Medical Clinic Doctors

Kincraig Medical Clinic has been at the centre of on-going difficult negotiations with Country Health re the contract  which is required to allow the GP’s to carry out services at the Naracoorte Hospital.  While willing to accept the standard contract with site-specific conditions, they say they will not accept any further compromise on the fourth doctors mandate for a Cat 1 caesaerean. They issued the  following statement a short time ago today Wednesday 23rd September.

The full release follows:-
Doctors at the Kincraig Medical Clinic would like to thank our community and supporters for their understanding of our stand on the important principles behind the ongoing stand-off forced upon us by Country Health SA.
KMC doctors have decided to release this statement in response to many genuine enquiries effectively asking “what is this all about?” and hope it provides some insight into the situation.
KMC doctors are proud of their hard-earned reputation for being community minded and absolutely committed to improving health outcomes for Naracoorte and the surrounding areas.
KMC’s new state-of-the-art clinic adjacent the Naracoorte Hospital demonstrates this long-term commitment and nothing, not even gross mismanagement of contractual negotiations by the State Government, will shift KMC’s focus away from the health and wellbeing of patients.
The basics (what is happening at the Naracoorte Hospital):
There are still no obstetric services, and women in labor are being diverted to Mount Gambier.
There are no anaesthetic services on-call for emergencies/airway management ,critical life support
Locum positions are being advertised, offering twice the standard rate.
The longer the lock-out continues, the greater the threat to elective theatre.
The approximate cost for one temporary locum doctor per day is $2000, but has been advertised through locum agencies at a rate of $1,800 for a 12 hour shift and also a premium rate of $2,500 per day.
In 21 days since lock-out, the “drive-in drive-out” solitary locum has cost an estimated $42,000, compared to 3-4 KMC Doctors would have cost $11,340 for emergency, obstetric and anesthetic on call for the same period of time.
What are the issues?:
The new Royal Adelaide Hospital is costing $1million a day in interest and with the two-month delay next year it is going to cost an extra $835,000 per day in interest.
Therefore CHSA has had its budget reduced as well as being advised to find “efficiencies”. This translates to cost-cutting by way of reducing contracts, cancelling elective theatre and extending waiting lists. Also affected are ambulance services and nursing levels at our hospitals.
Our position is that a mutually acceptable contract is vital for all parties and most importantly for patients.
For KMC, the provision of on-call services in the Naracoorte Hospital it is an essential tool for attraction and retention of skilled doctors, both now and into the future.
Research shows country people are at increased risk of adverse medical outcomes due to lack of existing services in local areas, we cannot accept any further compromise which would undermine regional services and fail to meet the SA Health mandated standards of care for patients.
For example – CHSA suggests that SA Health’s mandatory standards for the management of category one (emergency) caesarean sections in SA does not need to be observed in country areas.
Such standards are mandated and any suggestion that such requirements need not be met in regional hospitals is scandalous.
A history of negotiations:
Our contract with CHSA has worked very well for 15 years, a period in which KMC has provided a quality, cost-effective service.
CHSA have made a number of inaccurate and misleading public statements in recent weeks, including a number of attempts to lay the blame for the stand-off on the KMCdoctors.
For example – “99 per cent of rural doctors have happily signed up, therefore so should KMC”. This is not true. We invite CHSA to publish which centres are signed up and how long for.
KMC is aware that many of the doctors who have signed CHSA’s contract in April 2015 did so reluctantly and were most unhappy with the negotiating process and outcome and is due for renegotiation next month.
CHSA regions:
Country Health SA medical services/hospitals can be divided into three categories.
1 – The smaller country towns where the doctor is often an overseas GP doing hisrequired regional posting before moving to the city. Such doctors generally accept CHSA’s generic contracts because they have no long-term investment or lasting identification with the local community in question. Unlike KMC, these are rarely teaching practices for the next generation of rural doctors.
2 – Then there are the regional centres, such as Mount Gambier, where a significant amount of money is poured into.
3 – Thirdly, there are sub-regional centres such as Naracoorte, Murray Bridge, Kangaroo Island, Clare, Port Lincoln and Kadina/Walaroo. These vital hubs are located at strategically significant geographic positions and provide essential services via GPs with specialist skills given the towns are not big enough to have resident specialists.
KMC believes the doctors in sub-regional centres need site-specific considerations to attract and retain a skilled workforce.
One only has to reflect on the sad history of what has happened with contractual disputes in the SE and elsewhere in the last 15 years to realise how much long-term, high quality health care is dependent on a successful contractual resolution.
Examples of this have occurred in recent years at Penola, Keith, Bordertown, Mount Gambier and Millicent. Recent unsatisfactory contractural conclusion at Victor Harbor hospital has seen a huge cost blow out and loss of skilled resident GPs from the hospital.
In conclusion:
In many ways this impasse is potentially very close to being resolved. KMC has accepted CHSA’s generic contract, with site specific additions. The question of “when is a mandate not a mandate?” remains unanswered by CHSA.
Standards of care for country people, such as having a fourth doctor present for a caesarean section (as mandated by Health SA), needs to be upheld.
As always KMC has offered and remains willing and able to immediately recommence full services (as CHSA locum initially if requested at a reduced cost and without the need to compensate visiting doctors for travel and accommodation expenses).
This would enable full quality services to resume immediately, and provide a significant cost saving for CHSA. It would also be a tool for timelyresolution and we would extend our good will to CHSA.
Finally, KMC wishes to publicly acknowledge the work of Stephen Ramsdall who has been acting as CHSA’s representative in contractual discussions. Mr Ramsdall has been tireless in his efforts to bring about a resolution. However, he is limited by the upper echelons in CHSA and has had no room to make any further decisions other than to follow their instructions.
To that end, KMC invites David Swan, the CEO of SA Health and Rebecca Graham, the acting CEO of CHSA, to meet with us for a satisfactory resolution for all parties in particular country people.
At this stage, all KMC asks of our patients and supporters is for your on-going support, feedback and understanding that this is about long term standard of care for country people and attraction and retention of skilled doctors now and into the future.
Hopefully a resolution will occur in the immediate future.
We are putting a most fair and reasonable offer to CHSA this morning, and by their own standards they should accept it within 15 minutes.

5THE FM will seek a response from CHSA and update as it is received.