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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Our Little Monkey – guest post by Cheryl Minniss

When asked to write a short story about our son Mason and his journey I said sure, I can do that… I have been trying to put down the words for the last few months, it’s actually very difficult to put it on paper your son’s journey in such a short story, but I will try.

Our son Mason was born in Cairns June 14th 2000, our first born and he was perfect. He grew into a happy carefree child, always smiling and enjoyed life and was just the best thing that ever happened to us, we then had Rohan in June 2002, Mason was so happy to have a little brother, they did everything together, inseparable, they were best friends. Always by each other’s side, they hated to be apart. When Mason started school Rohan started kindy and they also loved that they were so close, Mason used to come over each break and see Rohan through the fence. As his first year of school came to an end, we started to notice a few things were changing about Mason,  we didn’t really take anything too seriously as we thought he was just changing and school was all new and he had to adapt.

As things progressed and Mason went back to school we were following up on a few things our doctor had asked us to look into as he thought something wasn’t quite right with Mason, he was changing and he seemed to be regressing in a lot of his behaviour. After many months of psychiatry visits and trying different learning techniques we were sent to a Paediatrician for further tests. This is where our lives changed forever, Mason was sent for an MRI and as that came back with a possibility of 2 problems, we were sent down to the Women’s & Children’s Hospital, in Adelaide (WCH) for further tests, to pin point what his diagnosis was to be. After further tests our Mason who was about to turn seven years old, was diagnosed with Metachromatic Leukodystrophy (MLD);  a very rare Metabolic disorder.  We were devastated, we were told the most horrible news that a parent ever hears, our first born son, our absolutely perfect child had a metabolic disorder that has NO known cure, and our son was dying right in front of us.

We searched the internet, worldwide for any hope that we could find to cure Mason. We joined a MLD Foundation Family chat page and learnt more about MLD, sadly none of the families had good news. We were trying so hard to hold ourselves together for both boys, and we could see Mason changing before our eyes, almost daily. His behaviours were going back to a toddler stage, and our younger son started caring for him, like an older brother does. Rohan became VERY protective over Mason, he was the best brother in the whole world.

We were put in contact with Sara, head nurse for Paediatric Palliative Care, at the WCH. Sara is a lady we describe as ‘an Amazing lady who we hope you never have to meet’, she is an Angel that walks amongst us. Mason was with the metabolic clinic at the WCH, and as MLD took over his body we started seeing less of his Doctors and more of Sara. We nursed Mason at home, our family room became our hospital room, but we did have a few long stays in the hospital, which we were thankful to have the Sam Roberts room to stay in as a family. But as soon as we were able to we came home, this is where Mason was comfortable in his own surroundings and with our family. There was many a time we thought he was ready to leave us and we had to start to prepare that one day our boy was not going to be here, this is an unthinkable thought for a parent, and also watching his little brother losing his best friend.

We were given a ‘Journey’ folder from Sara and she told me that when I was ready to start to read it, it will help you understand what happens when Mason is ready. I finally knew I was ready to read it, (Rob never read it) and it did help me to understand although it broke what was left of my heart I knew what to expect. As the months went by Mason was in so much pain and we just wanted him to stop hurting. Our child should have never had to suffer as he did, his life was shortened by a hideous illness and we couldn’t fix him. The day that Mason left us, was just perfect for him. I believe that he had everyone around that he wanted and he was finally  out of pain, no more medicine, no more Doctors or nurses, he was at peace.

I cannot thank Sara and the Paediatric Palliative Care Service enough, the care and compassion they show to families is beyond a job. The knowledge these amazing nurses and doctors possess with the care of a child who they know will not be with their family for long is just mind blowing. These people see things, no one should see a child go through, yet they hold themselves with dignity and confidence and continue to help hold the families together as they feel themselves falling apart. The care continues after the loss of the child with bereavement support and also a sibling’s workshop with a play therapist which is such a special time for these brothers and sisters. To know that they are not the only ones who have lost a brother or sister, is very important. Rohan enjoys spending time with the other kids and I know the workshops help him a lot.

One thing I will always remember is that at Masons funeral Sara and Mason’s metabolic doctor attended, and they both said it was nice to see Masons photo’s, as they always meet them after they have been diagnosed and never get to see the happy moments and the smiles. I had never thought of that before and now I always remember those words.

We felt the need to help out others in some way after we lost Mason, we knew what these families were going through and although no amount of money raised could change the journey they were about to travel, we could make it a little more comfortable for them. So we formed ‘4in3’ The Mason Minniss Fund, with the Women’s & Children’s Hospital Foundation. The name 4in3 means we are now a family of 4, just in 3 bodies. This is something our youngest son Rohan said the day we lost Mason and although he doesn’t remember saying it, it was the perfect name for our fund to honour and remember Mason.

We now fundraise to help comfort the families when they stay in the hospital. We have a couple of ongoing projects which help the families, the first is the ‘Masonette’, a comfort cupboard which is wheeled into a ward/room in the hospital and is filled with items of comfort that the families can use whilst they are staying in the hospital. They are allowed to take a lot of the items home with them, as we know even the smallest thing can be a memory that will be cherished forever.

We also help fund ‘Butterfly Baskets’ these are also filled with comfort items that the nurses can give a family when they are either staying in an area in the hospital or they can take them to the family at their home, sometimes a small gesture is like receiving a big hug.

We also deliver ‘Ro’s Holiday Hampers’ at Christmas to families of the palliative care service, who has a child with a rare disease, or bereaved families, this is a very special delivery at a time that the families are supposed to be celebrating being together.  Many of us, ourselves included just can’t face the shops and the crowds this time of year, so with our hamper being delivered it helps them not having to struggle to get to the shops, and pretend to be enjoying the festive season.

Our family is doing ok, we miss Mason EVERY single minute but we speak of him often.  Remembering special times which is lovely but also very painful, as his time with us was only short, ten years and ten months and four of those years he was very unwell. Sadly our memories are all we have now, but we feel him around us always.

As I try to keep this short I want to share that Mason had two favourite songs, these were songs that he always loved and sang and amazingly he chose these before he was sick but the words of the songs that became his life songs;

‘It’s My Life’ by Bon Jovi  and ‘Unwell’ by Matchbox Twenty

We miss our boy ‘ our Little Monkey’ Mason, this is a very short compacted note about our boy with a HUGE heart and even BIGGER blue eyes, who one day we will be with again, but until then I believe he will be around us always and take care of us from up above.

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.

Inspiring families

There have been some amazing families that I have met recently. For most bereaved parents re-living the past is still quite traumatic and still holds mixed emotions, but to then throw themselves into fundraising ventures for charities etc, I do find extraordinary.

One particluar family that I met about 12 months ago, set up their own fund in 2011 called ‘4in3’ the Mason Minniss Fund in memory of their late son Mason, who had MLD. The fund raises money exclusively for the WCH Foundation which is the official fundraising charity for the WCH hospital. The proceeds directly aid the Paediatric Palliative care Unit, here in Adelaide. To date they have raised in excess of $60,000.00.

The ‘4in3’ the Mason Minniss Fund holds a major fundraiser each year “A ladies night amongst the butterflies” where goods and services are donated by businesses, organisations, and anyone wishing to be involved, and then auctioned off.

It also holds other fundraisers throughout the year. Over Christmas it also delivered hampers to bereaved families of the WCH, donations were made by businesses and kind-hearted individuals.
This bereaved family like so many before it have turned a life-changing experience into a positive one!

For more information you can contact Cheryl or Rob Minniss by email: masonminnissfund@gmail.com

www.facebook.com/4in3themasonminissfund

www.twitter.com/cherminni

For more information on MLD:

http://en.wikipedia.org/wiki/Metachromatic_leukodystrophy

https://www.facebook.com/#!/supportALDS

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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

The Beginning

Well, finally I have started my own blog, for a number of reasons.

  • To write about my journey as a bereaved mother.
  • To create awareness about many rare diseases,of which my daughter has been recently diagnosed with.
  • To provide information and resources on some amazing bereaved families.
  • To also share stories about other incredibly gifted people I have been privileged to know.
  • To also shamelessly plug a new book I am writing.