Why our daughter’s 18th birthday is more than just a celebration

As our eldest daughter approaches her 18th birthday, I poise to reflect on why this is more than just a birthday celebration. She was diagnosed five years ago with a rare disease, a less common type of neuroendocrine tumour called a paraganglioma – quite a mouthful. We entered the public hospital system here in our home state not as strangers. You see we had already been through this almost two decades earlier with our first born son whom at just 13 months of age was diagnosed with neuroblastoma, a childhood cancer that occurs in specialised nerve cells which are involved in the development of the nervous system and other tissues.

Neuroblastoma is the most common solid tumour diagnosed in children aged five years. In Australia 40 children each year are diagnosed with neuroblastoma which is considered a ‘rare cancer’. Of those children with high risk or stage 4 only 50% will survive.

We were up against it back then, the protocol was brutal, our son was put through  a cytotoxic cocktail of chemotherapy drugs, then surgery, more chemo, an autologous stem cell transplant,  radiotherapy and finally retinoic acid which concluded the end of his nine months of treatment.

It was some months before he returned to being a cheerful, happy little boy. This cancer treatment took it’s toll not only on him physically, but emotionally and mentally we bore the scars. Our lives were in limbo, as Luke continued with regular blood tests and scans to monitor the effectiveness of his treatment and to alert us as to whether he would ‘relapse’. This eventually happened approximately five months later, in November 1998. The warning signs were there, loss of appetite, lethargy, it was time to get some answers…

Further scans indicated ‘widespread progression of his disease with a massive abdominal recurrence which extended into the extradural space, invasion of his vena cava, a mediastinal mass and parenchymal lung metastases.’  A Tumour Advisory Committee Meeting dated the 8th December recommended a palliative approach was an appropriate way to go.

We had a few options;

  • continue chemotherapy for about six weeks to get us through Christmas
  • admission to hospital as an in-patient palliatively
  • go home with palliative care support

We chose the later. Three weeks later our son passed away peacefully at home, just five days prior to Christmas 1998.

Our daughter came into our lives as a ‘rainbow baby’ as my husband and I had also suffered a stillbirth just months prior to Luke’s death. As she reaches this birthday milestone we are saddened that our son never had this opportunity, but ever so special for us as a family that one of children have made it this far. Although her condition is currently stable, considered to have metastatic potential ( she has tumours near lumbar and sacrum) as it is hereditary she will be monitored for the rest of her life. She has been through surgeries, and more recently PRRT.  She will continue having regular blood tests and scans. If required she will have further treament. This year she will graduate from High School and her positive attitude and outlook on life are a real tribute, as is her resilience.

We cannot control our circumstances, but we try not to live in fear. Despite our hardships I feel an unwavering amount of gratitude, it allows you to look at things retrospectively. We really have so much to be grateful for, including an organisation – the only one in AUS/NZ dedicated to supporting patients with NETs the Unicorn Foundation.

This September Childhood Cancer Awareness Month kicks off as the Sydney Opera House sails will ‘light up’ gold to honour all those children diagnosed with cancer on September 1st. It will be a special night as families, friends and supporters of those affected gather for a candlelight vigil, all people are welcome and LED candles will be provided. During the evening, images of children who are going through treatment, survivors, and precious lives not lived will feature on a big screen. You can be part of this virtual tribute wall by emailling your tribute (a photo and a few words about your loved one) to marketing@ccia.org.au

 

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LifeCycleForNeuroblastoma

It’s a small world really especially when you can reach an audience in another country via social media. Last week I stumbled upon 60 year old Steve Taylor aka Von Schiehallion, the LifeCycle man.

Steve opens his blog with the following:

“The NCCA UK helps families affected by the childhood cancer, neuroblastoma. In most cases neuroblastoma is only diagnosed when it has already progressed to a late ‘high risk’ stage.  Even when children are tested clear of neuroblastoma after initial hospital treatment, a high percentage of children with high risk neuroblastoma will relapse and some children will not respond to therapy.

LifeCycle is an extraordinarily difficult challenge meeting an extraordinarily difficult disease head on.

Here’s the deal: The circumference of the earth at the equator is 24,902 miles. The LifeCycle target is 25,000 miles of commuting to and from work in 4 years. That’s the same as cycling from London to Manchester every week: but there’s also a thousand feet of climbing in each direction. That’s equivalent to climbing Ben Nevis twice a week on a bike. The route passes by Europe’s biggest onshore windfarm at Whitelee. There’s a windfarm on the Eaglesham Moor for a very good reason… And as if all that wasn’t enough, I was 60 when I started, and just over four years from retirement. The only way to complete this challenge is to never give up”.

Unfortunately our son was one of those high risk cases, and he did not survive. But almost two decades on and so much has changed in regards to treatment, clinical trials and awareness.

So I wish Steve all the very best on his journey to complete his goal, so far he has managed 14, 837 miles. He has a fundraising page you can take a look here https://www.justgiving.com/SteveTaylor-60/ and his blog http://lifecycleforneuroblastoma.com/ and you can follow him on twitter https://twitter.com/VonSchiehallion

 

the meaning of life is to find your gift

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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That conversation

I recall back to the beginning of our daughter’s diagnosis. For most parents preparing to have ‘that conversation’ about sex can be awkward & maybe a bit daunting.

But just how would you deal with explaining to your ill child that they don’t have cancer. Even though you can’t be really sure yourself but just want to be as positive as you can.

Tayla was born after our son Luke died.
His photos still adorn our walls, we celebrate his birthday and the anniversary of his death every year.

From the time the girls were talking they would ask ‘whose that’ as they pointed to his photos. They didn’t quite understand ‘where he was’ but over time we explained it in more detail.

So when Tayla was ill and we were unsure as to what was really wrong with her, our conversation quickly swung to ‘cancer’ and ‘death.’

At twelve years of age she was and still is incredibly ituitive. How do you reassure your child that everything is going to be alright when there is a familiar knot in the pit of your stomach. You have your own anxieties and fears about what ‘could happen.’

As I sat on her bed the night before we were heading back to the GP to get her test results, she asked me ‘Do I have the same cancer that Luke had?’
The next question came hurtling at me, with nowhere to go…’Am I going to die?’

Hospital

As I sit in hospital for the second time in nine months, I realise just how much hospitals are places you “love to hate”. By that I mean although they are offering the best care, your “life is on hold”. It is also a case of more of the same, each day you sit and you wait, doctors and nurses come and go.

As the nursing staff and doctors prepare our daughter for her second operation to remove more tumours, quite frankly we can’t wait to get back home. Alot has changed in the fifteen years since we were last in this very same hospital with our son Luke who was battling Neuroblastoma.

The wards are slowly being renovated, which to say is well overdue is a gross understatement. Back in 1997, we shared a bay which consisted of four beds plus each patient had a cupboard and a TV, parents had just a recliner chair to sleep in. The only privacy was a curtain, that could be pulled around the bed. There was just one bathroom shared between all patients, consisting of a shower and toilet. If you were really lucky you had a side room, which meant complete privacy.

Today, most wards now have more side rooms as well as bays that can consist of four beds or two. Until you really experience what it is like to spend time in these wards you really appreciate what you have at home.

It is also an expensive exercise, paying for car parking, buying food at the hospital cafeteria’s or nearby cafe’s. But being able to escape the confines of the hospital walls, to regain one’s sanity is also important.

We are lucky as we will only spend a limited amount of time in hospital this time round. But for those long term patients and families which spend countless days, weeks and even months, each day seems to blend into the next.

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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