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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Wild about Harry

As it is ‘Dying To Know Day” which has been launched by The Groundswell Project today August 8th 2013, I decided to post this. Yes I could have talked about our experience with losing our children, but thought this more appropriate. Death, no matter what the set of circumstances is difficult. It is life-changing, the grief at times all consuming, but as time marches on we do learn to ‘live’ with it!

This post is about a fantastic Yr 6 teacher my daughter had during primary school in 2011.

Sadly he took his own life (he was in his late fifty’s) just prior to Christmas in that same year…

This extract is from a letter I sent to the principal just after a Memorial Service was conducted early the following year (2012) at the school.

“For those parents and students who did not know Harry and witness his magical talents as a teacher, and whose children he did not teach, we as a family have been absolutely privileged to know Harry, and to entrust him to educating our daughter Tayla from yr 5 – 6.
Under Harry’s guidance Tayla has grown into a mature, capable and confident student, she became SRC last year, as well as a Safety Ambassador, and was involved in many other activities throughout the school year, including the Anzac Day Youth Vigil, SAPSASA rugby/cross-country/Districts Athletics Sports Day to name a few.
Harry’s positive influence has seen Tayla transform from a quiet yet diligent student into one who now throws herself into many activities, without hesitation.

For those who don’t know me I have been a parent as this school for the past 7 years, both of my children have been students at WPS from reception to present day. I have been involved in class activities over the years, as well as a Parent Rep, helping with reading in the class, attending school excursions, and camps and recently attended the Edithburgh Camp for Harry’s yr 6 class as a parent volunteer, along with another parent.

Although I don’t think I had the opportunity to speak with Harry on a personal level, as he always seemed to keep on task with matters relating to education, I can honestly say I speak from experience, when I say without question, that after his daughter Kayla’s death I also knew what he was going through.

We lost our son Luke, after a short battle with cancer at just 2 years of age back in 1998, and Harry’s death as well as his daughter’s has had a profound impact in so many ways. It would be fantastic to see a day held in Harry’s honour, sometime in the near future as a mark of respect, where we can reflect and marvel in his talents as a teacher.

In closing I just wanted to quote a typed note that Harry gave out to his students with their end of year reports, which just happened to be typed on hot pink copy paper!”

“Howdee Everyone…Well Here It Is”!

“I need all of you to know that my time spent with your children has been one of, if not the most satisfying yet challenging, rewarding and memorable times that I have experienced. The calibre of your children, their response to requests, ability to adapt, perception and understanding of our intentions during lessons, and efforts to comply and develop are a credit to You. You have by and large given me your trust to run the class my way, instill a team approach, apply behaviour management as required and wrap each child in their own layer of thinking and humour. I am convinced by their regular positive attitudes and tangible written evidence that they are individually in the best shape possible for year seven.

To each and everyone of the previous Littlepudlians of 2010 and 2011 who are now the Giantpudlians of  2012 remember our Motto’s, use your fabulous writing and communication skills often, keep the humour going, enjoy each day and keep in touch”.

Auf Wiedersehen

Harry
——————————

For more information on ‘Dying To Know Day’ go to http://thegroundswellproject.com/dying-to-know-day/ for a list of events around the country.

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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