The Telethon Adventurers

Sinead Engelbrecht

Hayley and David Engelbrecht were thrilled when Hayley gave birth to a long anticipated baby daughter, to add to their brood of four boys.

But when their baby girl, Sinead, was just 11 weeks old, she was diagnosed with an extremely rare brain tumour, a congenital glioblastoma multiforme, grade 4, stage 4. It was taking up three quarters of her head and was pushing her brain to the back of her skull.

Sinead underwent numerous life threatening operations to debulk and resect the tumour, and as a result of the second surgery, had the left frontal half of her skull removed. At one point she lost six times her blood, one of the anaesthetists commented that in the 20 years of working at PMH, he had never had to transfuse that amount of blood for someone so young; she also had to be resuscitated. On one occasion, Sinead had to have emergency surgery to evacuate a clot at the back of her head, causing immense pressure; on another occasion, she was rushed to theatre to have a reprogrammable shunt inserted, which would relieve pressure build up due to hydrocephalus.

Sinead began chemotherapy in December 2009, after recovering somewhat from her surgeries, completing the final round on Christmas Eve 2010. The oncologists said that they were merely buying her family time to spend with her (the average survival time for patients with this tumour is 12 months, with no survival statistics more than five years).

With all the surgeries and treatment she has received, Sinead’s chance of survival has been increased to 33%, which is still extremely negative and hard for her family to come to terms with. All they can do is stay positive, have faith and live each day to the fullest.

Sinead is now 18 months old, and has not only exceeded everyone's expectations and gone into remission, she’s also learnt to walk and is showing every sign of being a bright, happy little girl with no indication of brain damage.

Harry O'Neill

In June 2010 Harry started to complain of a sore arm and after a trip to the doctors and lots of testing, including a biopsy Harry was diagnosed with osteosarcoma in his left shoulder joint and humerus.

Within a week we were talking of chemotherapy, then surgery to remove the shoulder and humerus, and then more chemo. T

reatment started in late June and Harry went through 18 rounds of chemo and an 18 hour operation to remove the tumour and replace the shoulder bone and humerus. A bone from the bone bank and also the fibula from his left leg were used in his arm, so Harry spent nearly 6 months after the operation in a wheelchair.

 The treatment was very intensive and we were in hospital most Mondays for a four day stay with the odd week break for his blood counts to recover.

 Harry has now finished his treatment, and will have tests every 3 months to check how he is going and to make sure that no cancer cells have come back.

To read Harrys journey, click on www.harrys-journey.blogspot.com

Oliver Roebuck

On Thursday, July 10, 2008, when he was only 8 months and 1 day old, weeks of increasing sickness and days of tests culminated in a final diagnosis – Oliver had cancer. His was a form of non-Hodgkin’s lymphoma known as anaplastic large cell lymphoma. The next day he would have baseline scan’s, be fitted with a central line into his heart, and begin his chemotherapy as part of a clinical trial.

Every day for the next 12 months he had numerous drugs, morning, noon and night, to protect him from the side effects of his chemotherapy. Every Wednesday we went back to PMH for Oliver to have a needle placed into his port and receive his chemotherapy as part of a clinical trial. Every 3rd Wednesday he would receive a veritable cocktail of drugs. His hair fell out, and he developed terrible mucusitis from his mouth to his bottom. After each of his big doses we would gently remove large pieces of tissue that had peeled from his mouth, and gently wash and cover his bottom with every nappy change with 3 different creams to protect it from the chemicals that his body was removing. After 6 month’s the trial was cancelled due to the side effects it was having on the children, and Ollie would now receive a different drug and only need to go in for his 3 weekly cocktails. Fortunately, this was much nicer to him, and a thick mop of hair soon grew back.

Oliver was one of the lucky one’s – he has survived and thrived. If you were to see him now, you wouldn’t believe he was ever sick. But his wellness is tinged with a little guilt for me, because so many of our little friends must struggle on with the legacy of their treatment, and too many little bodies grew tired with the constant fight. And so we march on, not letting our son be defined by the cancer he was too young to understand and remember, but never forgetting that he was one of many brave and courageous little soldiers.

Emily Jane Thorburn

Born: 8 February 2005

Diagnosed: 29 April 2010

In Gods arms: 15 August 2010

In February 2010 Emily started to lose her hearing. Over the next two months she went from being a perfectly healthy little girl to one who suffered "night terrors, vomiting and malaise and eventually total hearing loss. The week before her diagnosis she started to suffer an altered gait and her vision declined. On the day of her diagnosis Emily fell and hit her head and I took her to PMH Emergency where I planned to stay until she was given a thorough examination. A very astute Triage Nurse immediately recommended a CT scan where a lesion in Emily's brain was discovered. We were admitted that evening and an MRI on the 29 April confirmed diagnosis of Diffuse Intrinsic Pontine Glioma (DIPG).

This is an inoperable brain tumour (due to it's consistency - like pepper grains in jello) and also doesn't respond to any currently known Chemotherapy.

Emily was placed on steroids to reduce brain swelling and aid CSF drainage, which saw a return of her hearing. Ironically Emily's optic nerve had suffered irreparable damage due to the pressure and she lost her eyesight.

Emily underwent 36 radiotherapy sessions, all under General Anaesthetic. This is the only therapy currently available to extend life as DIPG is terminal.

Normally following radiation, the DIPG shrinks and sufferers enjoy 6 to 18 months of a quality life. In Emily's case, there was no such "honeymoon period".

Following radiation Emily's tumour shrank, however due to her non-response a further MRI showed unexplainable lesions covering the surface of her brain. As a result of these lesions Emily suffered repeated petit Mal Epileptic seizures.

Emily lost consciousness following these seizures and was placed in Palliative Care on Ward 3B. Three weeks later on Saturday 1 August Emily opened her eyes and said - "I want my Mummy". This day was spent talking and laughing with Emily, feeding her ham and cheese and ice-cream! Staff from the Ward crowded around her bed unable to believe this courageous, brave little girl.

That night Emily went to sleep and once again lost consciousness. Emily stayed with us for a further two weeks listening to her Mum, Nana and favourite Aunties tell her stories and sing her favourite songs. She passed away peacefully surrounded by her family early on Sunday 15 August, the Holy Feast day of Our Lady

Emily Turner

On December 23, 2009 Matt and Tina took their 17 month old Daughter Emily to PMH suffering from shaking eyes. By Christmas day Emily was shaking uncontrollably and could no longer walk or sit without falling over. Emily was admitted to PMH and underwent countless test and treatments including scans and a Lumber Puncture.

Emily was treated for several weeks before a MIBG scan located a Neuroblastoma stage 2b growing out of her spine.

On January 18, 2010 Emily underwent 6 hours of Surgery to remove what they could of the Tumour. The wonderful Surgeon was able to remove 99% of the Tumour the rest being to close to the spinal cord.

As a result of the Tumour Emily now suffers from an extremely rare condition know as Opsoclonus Myoclonus Ataxia, Doctors know very little about this condition and told Matt and Tina that 60% of children with this condition are dependent on care for life.

Matt has researched this condition and personaly found a treatment from the USA that has helped Emily tremendously. Emliy still has treatment at PMH every month.

Emily is doing so well and both Matt and Tina are extremely grateful for the expertise and care of all the staff at PMH

Emily is a very happy little girl, a lover of nature and all animals.