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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Shattering the silence on stillbirth

Return to Zero is a new feature film produced by Sean Hanish (writer/director/producer) and is based on his own experience of stillbirth after his wife lost their baby son in 2005. The story centres around a successful couple whose baby dies just weeks before the due date.

The movie’s cast includes Minnie Driver, as mum Maggie, and dad Aaron is played by Paul Adelstein. In the US alone over 36,000 stillbirths occur each year, and it seems according to Hanish its time to break the silence on stillbirth! Currently it has been shown at movie festivals and Hanish is currently looking for a distributor for the film.

A strong presence via social media including twitter https://twitter.com/return2zerofilm and facebook https://www.facebook.com/returntozerofilm is spreading a strong message to Hollywood. Through it’s Local Leaders around the world this movie indeed is the platform and there is an audience ready to support and view it.

For more information on the film click on the link below:

http://www.returntozerothemovie.com/synopsis.php

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*As reported in 2011 via http://www.news.com.au more than 2000 stillbirths occur in Australia every year and the rate is more than 50 per cent higher for indigenous Australians than non-indigenous, latest research shows.

Around the world between 2.1 to 3.6 million stillbirths occur every year, 98 per cent of them in developing countries. There are more stillbirths than children killed by AIDS and malaria combined.

http://www.news.com.au/national-news/medical-study-into-stillbirths-reveals-preventable-tragedy/story-e6frfkw0-1226038932586

Book signing at Collins Booksellers Edwardstown

After a successful book launch two weeks ago, I have been overwhelmed with the positive feedback on my first book ‘Through A Mother’s Eyes’. My first book signing at http://www.collinsbooksellersedwardstown was also a great day. A nice crowd of people attended where 51 copies of my book were sold. I had set myself a target of selling 50 copies so that was amazing. Thank you to all my friends and family for your support, it means a lot!

I was approached by a lady whom had suffered a stillbirth many years ago, I would estimate she would be in her 50’s. Her daughter-in-law also suffered the same fate recently, and it is to these people I hope my story offers hope. We agreed that the pain is still there, and the grief in essence never leaves. It just slowly subsides, the easiest way to explain it is to liken it to the ocean. In the beginning it is quite fierce, as the waves pound and threaten to engulf you, and almost swallow you up! But as time goes on, it can also be a gentle rolling and rocking rhythm, as it almost seems to tease you, and lull you into a false sense of security. The storm may have passed but the remnants of the aftermath are still present.

Here are a few comments on my book so far:

I couldn’t put your book down! It is a beautifully written and presented book, that belongs on every bookshelf. You truly are inspirational! While no-one I know has been what you have been through, the way you have shared your thoughts and feelings so honestly and openly, I feel everyone can relate to it, on some level. You are an amazing lady!! xx
Thank you for this beautiful, sad and loving journey, your courage, strength and love is truly an inspiration to all and should be taken into everyday of our lives. You should be so proud of yourself as I am sure your two little angels in heaven are xxxx

sara

Cody

I fell pregnant during Luke’s treatment in 1998. It was a normal pregnancy, but having a sick son to deal with certainly kept me occupied.

It was during my second trimester, that things went pear-shaped. Luke was undergoing some tests at the hospital, when I mentioned to his nurses that I hadn’t felt any movement!

They sent me off for an ultrasound and I was shocked by the news. Our baby had no heart beat…I had suffered a stillbirth at 26 weeks gestation.

Unfortunately I needed to be induced so that I could go through labour and deliver the baby.

My obstetrician was able to induce me at the hospital and some hours later on 02/09/1998…Cody Alan came into and subsequently left this earth.

There was no fanfare, just alot of sadness and grief that out little son never had the opportunity to open his eyes and meet us. Nor did he have the chance to feel the unconditional love penetrate through his very being.

This was a tragic day for my husband and I, as well as for our families. We organised a private funeral where Cody Alan was laid to rest.

October 15th is International Pregnancy and Infant Loss Rememberance Day. The wave of light invites baby loss families, friends and loved ones from around the world to join in honor and remembrance of their loved and longed for babies on October 15 at 7:00 pm in all time zones.

‘Lighting begins in the first time zone and remain lit a period of one hour, with the next time zone lighting respectively. The result is a continuous chain of light encompassing and spanning across the world and around the globe for a 24-hour period illuminating the night in love and light in honor and remembrance of our children.

Candles, monuments and landmarks are lit individually as well as in groups, in homes and community settings. Wherever in the world you are, you will be joining families, friends and loved ones across the world and around the globe for the International Wave of Light™ in memory of all children who pass away during pregnancy and in infancy.’

‘The campaign for Pregnancy and Infant Loss Remembrance Day in Australia began in May 2008 when Nicole Ballinger of the State of New South Wales (NSW) approached her State and Federal MPs to request their help in establishing this Day.[10] Although aiming for a nationwide declaration, Ballinger took this two-pronged approach as she had been advised that federal motions are often passed once they are first passed at the State level.

Guided by her MPs, Joanna Gash (Federal) and Shelley Hancock (State), Ballinger lobbied both levels of government beginning in 2008: utilizing petitions, the internet and social media, and repeated correspondence with Australian Prime Ministers, NSW Premiers, Health Ministers, Senators and other MPs. In support, Gash and Hancock continued to present this motion in parliament at the State[11] and Federal[12] levels.

On October 14, 2011, Hancock and NSW Health Minister Jillian Skinner announced the official declaration of Pregnancy and Infant Loss Remembrance Day in NSW. As of 2016, Ballinger continues to lobby the Australian government, with the support of Gash, to acknowledge Pregnancy and Infant Loss Remembrance Day officially and declare across Australia.

The campaign for recognition of Pregnancy and Infant Loss Remembrance Day in Western Australia began in 2012 by John and Kate De’Laney. However it was a letter that Mrs De’Laney penned, in September 2013, to Premier Colin Barnett which brought Pregnancy and Infant Loss Remembrance Day to his attention. Mr and Mrs De’Laney then began working with the Honorable Donna Faragher, Parliamentary Secretary to have the day formally recognized.

On October 15, 2014, the Western Australian State Government passed a bipartisan agreement to officially recognize Pregnancy and Infant Loss Remembrance Day. In the motion put before the Legislative Council Premier Colin Barnett said “Through this remembrance day we hope to create a greater awareness in the community about the immeasurable impact that pregnancy and early infancy loss has on so many women, their partners and families within our community. We hope that through the recognition of their loss and the subsequent pain endured, this remembrance day can play a small part in enabling families to find a way forward in their grieving, and in time heal the deep wound of loss. Most importantly, this remembrance day acknowledges that these babies were lovingly anticipated and remain forever in their parents’ hearts.” [15]

Ms & Mrs De’Laney continue their efforts to have October 15 recognised at a National level with representations to The Prime Minister, The Leader of The Opposition and a number of other Federal Members of Parliament. They have also established the ‘We Remember’ campaign which is a social media campaign aimed at demonstrating grass roots support for National recognition of October 15 Australia wide.’

A fleeting moment our chance to connectmy love was lostwhen you were laid to rest.Wrapped in a blanketa bonnet on your headthese photos are allthat we have left.bheading