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

Para…what?

Reflecting back on 2012 it was amazing that we made it through truthfully.

As I started writing this blog some weeks ago we were dealing with another issue at hand, and have been for the most part of the year.

In March our eldest daughter Tayla, who was just 12 at the time, was diagnosed with a rare neuroendocrine tumour called a Paraganglioma, a Para what I hear you say…exactly!

This is something we were never, ever expecting or would have ever dreamed of going through, again. But here we were dealing with a rare tumour that rarely appears in children, for the most part it is an adult’s disease.

Tayla experienced vague symptoms for some months prior, but they never really appeared to be affecting her ability to function normally. She still woke in the morning, and went off to school quite happily. These vague symptoms included; heart palpitations, anxiety, frequent urination, night sweats and dizzy spells.

It wasn’t until one morning she flopped on the sofa and complained she wasn’t feeling well, she did look pale, and her face was quite withdrawn. She also mentioned a lump in her tummy which immediately got me worried, she showed me where this lump was and I really thought possibly it was nothing, but worth a trip to the GP.

The GP examined Tayla and mentioned a possible “hernia”, but requested an ultrasound for further investigation, and this was performed that afternoon.

This lead to more scans and tests, which took a period of 3-4 days. Eventually it was apparent that she needed to be referred onto the WCH in Adelaide.

From there, Tayla was admitted that night and a biopsy to be performed the very next day. Ironically the surgeon that would perform the procedure,was the husband of the Oncologist that gave us the news some 14 years ago, that Luke’s illness was terminal. Another nurse we knew from the oncology department where Luke was treated was also now the Nursing Services Director for the Paediatric Emergency Department. She greeted us with a warm hello and hug…I don’t think we really believed this was happening.

Approximately 97% of these tumours are benign, only 3% are cancerous and these tumours are indolent or slow-growing. Tayla’s operation was carried out in April of this year, and we now find eight months on, that there are two more tumours also in her abdomen to be removed in January.

What are Paraganglioma’s

Paragangliomas are rare tumors that grow in cells of the peripheral nervous system (i.e. the nerves outside the brain and spinal cord). The peripheral nervous system can be divided into the sympathetic and parasympathetic nervous systems.These sympathetic paraganglioma may make too much adrenaline (parasympathetic paraganglioma do not). Adrenaline is a hormone that affects such bodily functions as heart rate, blood pressure, breathing, digestion, sweating, urination, and sexual arousal. Adrenaline is said to control the “fight or flight” response, or in other words, it gets your body ready to react to stressful situations.

Paragangliomas can be found in the skull region, neck, chest cavity, abdomen, pelvis, and bladder. Far and away, the most common site is within the abdomen where approximately 85-90% are located.
unicorn foundation

*Tayla persisted with these symptoms of feeling not quite right, for some time. I suppose now I wish we had listened to her earlier. Detecting the tumour herself was quite incredible reflecting back, and has probably lead to a favourable outcome going forward!