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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I salute you Rosie Batty

Australia Day 2015 marks an important era as four unique women accepted awards on the lawns of Parliament House,Canberra yesterday. Australia’s Local Hero of the Year Juliette Wright-Social entrepreneur, Young Australian of the Year Drisana Levitzke-Gray-Deaf Advocate, Senior Australian of the Year-Jackie French-author and my favourite Australian of the Year-Rosie Batty-Domestic Violence Campaigner.

I will focus on Rosie for a few reasons; as she has found her voice, and now a platform (Australian of the Year) as a victim of domestic violence in the cruelest of circumstances. She dedicated the award to her son Luke, and in her acceptance speech, vowed that her son’s death would not be in vain. This woman has been through the unimaginable loss of her young son, by her ex partner in a public place on February 12th 2014, here she is almost 12 months later, accepting the nations most prestigious award.

As a bereaved mother myself I share her pain, and her loss and part of her grief, I cannot profess to possibly understand how she has grieved that loss. I have never lost my son to a domestic violence dispute thank god, but I have lost a son to childhood cancer. Rosie has an opportunity, to act on behalf of the thousands of women that don’t have a voice in domestic violence. She is a role model and an inspiration to women all around the world, for she decided not to sit back, she took action, she spoke about her experience in main stream media, and people started to listen.

I hope that Rosie inspires many more Australian women in all walks of life to take action, we need role models & we need leaders. These are ordinary people doing extraordinary things. Rosie Batty has certainly inspired and empowered me. Who has inspired you? Leave your comments, let’s start the conversation.

You can read more about Rosie’s story here http://www.themonthly.com.au/issue/2014/october/1412085600/helen-garner/mother-courage

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The Soul Project

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The Soul Project  will be a collection of stories and poems written by other bereaved parents that have also suffered the loss of a child through illness, stillbirth, neonatal loss and early pregnancy loss.This will culminate in the Women’s and Children’s Paediatric Palliative Care Service (PPCS) 15th year of service. This book needs contributors for it to go ahead.

I will be on the look out for Beta Readers and other input for the book as well. The title of the book is yet to be decided.

*NB This book will be focusing on bereaved parents whose children have been patients or the families have received support from the Women’s and Children’s Hospital in Adelaide.

If you would like to find out more please sign up below to keep in the loop. Or you can email me direct jackie_barreau@live.com.au for more information on the submission process.

Reflections

It has been a strange experience, now my book has been published. It has allowed others to share in some way my experience first-hand, my grief and the emotions that come with such a devastating and heart-breaking loss.

I wanted to convey the raw emotion and love through my writing, and I think I have accomplished that. It is an experience that has had a profound affect on me personally, and spiritually, our lives have forever been changed by the deaths of our two sons.

It was brought to my attention just recently that this moving tribute to our boys has also left a legacy in their memory forever etched in each page of my book.

‘Sometimes we need to reach deep within our souls to find the answer.’ – anonymous

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