The Human Spirit

Recently I was drawn to two articles in the media and in particular the first which featured on ABC Australian Story this month ‘Cracking The Code’: http://www.abc.net.au/austory/specials/crackingthecode/default.htm.

Stephen and Sally Damiani’s first born baby son Massimo had a type of Leukodystrophy, the only problem was this was an uncategorised form, and most cases are genetic. This lead the father Stephen on a pain-staking long journey to delve further into human genomes, and to map his genome and his wife’s. With the help of a Genetic Scientist here in Australia, after four very long years this lead to a most remarkable discovery.

This story is a case of a father’s undying love for his son, his wife and his quest to find answers, a diagnosis and potential treatment for his son and other children. An amazing breakthrough which may just change how people are treated for many other types of diseases in the future.

For more information go to Mission Massimo Foundation

http://www.missionmassimo.com/

Australian Leukodystrophy Support Group Melbourne

http://alds.org.au

‘4 in 3’ The Mason Minniss Fund

https://www.facebook.com/4in3theMasonMinnissFund

The next story hits home in a big way, especially when it is a disease that claimed your child’s life!

Evander was just one day old when he was diagnosed with Neuroblastoma. Six months of Chemotherapy shrank the tumour, but there was damage to his spinal cord, now Evander is likely to be a paraplegic. His family have set up a fund to allow donations to continue to provide equipment and therapies for Evander and other children. His family are continuing other forms of intensive physiotherapy like ‘Locomotor Training’ as Evander also has a spinal cord injury but does not qualify for the government’s ‘Better Start Initiative.’

http://www.evanderconroyfoundation.org.au/

Both of these families highlight my catch phrase which is ‘ordinary people doing extraordinary things’. They have pushed the boundaries with their hope, spirit, courage and persistence as they continue their journeys to find better outcomes for their children.

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Toodles

Battling with the reality that we have a daughter with a rare illness, that at times was so similar to her elder brother’s was frightening. Discovering she had a rare tumour, was quite confronting. But the fact was we as parents were going through this all over again.

Hospitals are places you visit other people, we had spent the best part of Luke’s last year on this earth in hospital and we really didn’t want to be there again.

But despite this, the staff at the WCH were unbelievable…I am talking about the nurses, doctors and support staff. I felt at times that someone was looking after or maybe over us. Bumping into nurses that had looked after Luke in the oncology ward over a decade ago wasn’t easy, it was spooky but also re-assuring if that makes sense.

At the time, you don’t really think you just act, and we knew that this hospital was the best place for Tayla, they also knew our history. We as parents just wanted to find out what we were dealing with and so did Tayla.

One of the first people I made contact with after our families and close friends was Sara. She looked after Luke palliatively whilst his cancer was terminal.

We appreciated her support throughout those first few years after Luke and Cody’s deaths. Although incredibly busy with her role as Unit Head of the Paediatric Palliative Care Unit, she still had time to keep in touch.

A person I have alot of admiration and respect for on a personal and professional level, she is also acknowledged in my book.

A current winner of the 12th Annual Nursing and Midwifery Excellence Awards in 2012, well it’s know wonder.

I am sure I am speaking on behalf of so many families that have had the privilege of meeting and witnessing her incredible compassion as a nurse.
She is nothing short of a phenomenon.

Ethereal-like quality
surpasses all humanity.
Unparalleled clarity
transcends immortality.

Thursday’s Child (cont’d)

We arrived at the hospital late that afternoon, and went immediately to the Emergency Dept, where we were ushered through by a nurse to take Luke’s obs. Questions were asked about Luke’s symptoms, and we told them what we could.

Some time later, a blood test was required and so my husband David carried Luke into a treatment room, where several nurses were standing…I waited outside.Luke was placed on the bed, where the nurses were preparing to take his blood.

David needed to refrain Luke from wriggling and thrashing about, and it wasn’t long before his screams echoed down the corridor. I peered through the door, and caught a glimpse of David holding Luke down, as well as the nurses. Our poor little boy was terrified and so were we! As they made their way out of the room, Luke was bathed in sweat, and tears were streaming down his face, and also ours.

From there we were taken to a room, where a ward clerk spoke to us, he mentioned having to spend the night in hospital, and possibly a week or two while tests were carried out. I spent that first night with Luke, we were sent to a ward for contagious diseases, as it was initially thought he may have contracted hepatitis.

It was a noisy place, nurses talking and laughing loudly, babies were crying…not the sort of place you get a good night’s sleep. Luke eventually settled, apart from the nurse coming in to check his obs; and administer panadol and check his blood pressure.

The next day we were greeted with more nurses, doctors, interns, medical students came and went. Luke was the centre of attention, as his stomach was examined repeatedly by the doctors, all eager to give their medical opinion based on his symptoms.

By mid morning most of our family had assembled in our room, gathered around Luke’s cot, waiting for a verdict! Two male doctors entered the room, and greeted us. One was quite old, but exerted authority, the other perhaps in his early forties. They introduced themselves and proceeded to talk about Luke’s condition and their initial diagnosis.

It was highly likely our son had a tumour, they were not sure exactly as a biopsy would need to be performed, but they had mentioned two types of cancer, Wilm’s Tumour or Neuroblastoma.

Once the biopsy was carried out they could then give us a more informed diagnosis, along with the blood test, so until then we had to sit tight!I was in shock, and so to my husband, tears streamed down our faces.

The biopsy was scheduled the next day, and so many calls were made to family and friends over the coming days, as visitors came and went. Luke needed to fast for the procedure, and he was anaesthetized under a general anaesthetic.

It was then confirmed the following day, that Luke had Neuroblastoma. We were then moved to the oncology ward called “Brookman” where Luke would receive his chemo as an in-patient for the next 6-9 months.

We met some other patients and families, whom were also under going treatment. It was an eye opener, to say the least. The ward was tired looking, with out dated curtains, we were put in a bay with four other patients, with only a curtain, for privacy. Parents had a Jason recliner to sleep in, pale brown in colour. There was a toilet/shower and deep basin (to bath babies) which was shared amongst the patients/parents.

For more information on Neuroblastoma:

http://www.cancer.org/cancer/neuroblastoma/detailedguide/neuroblastoma-diagnosis