Bereavement Support

No parent is prepared for a child's death and it is something no parent should ever have to endure. It is a devastating experience. Seeking support from family, friends and health professionals can be helpful and we have put together a list of resources below.

We appreciate that what you are going through is impossible to put into words and is unique to you. In case it might be of some comfort in some small way, we have created a Bereaved Parents Closed Facebook Page for parents who have experienced the heartbreak of losing a child to neuroblastoma.

To find the page please click here 

Neuroblastoma Australia Bereaved Parents Facebook Page

This closed group Facebook Page is managed by two parent volunteers, Kirsty Lambert and Jo Turnbull. Tragically, they know first hand the devastation and heart break of losing a child to cancer. Everybody experiences bereavement in their own way but it can often be a lonely and isolating place. The aim of this Facebook page is to create a safe space where you feel understood and supported by other bereaved parents, where you understand your reactions are part of a grief experience. The effects of losing a child can last a life time so the closed Facebook page is open to any bereaved parents no matter when they lost their child. 

Kirsty Lambert shares the story of her little girl, Olivia and her fight with neuroblastoma.

Hello! My name is Kirsty Lambert, the mother of Olivia Lambert. In August 2006, our lives were devastated with the news that our beautiful daughter, Olivia (or Oli, as we often called her) was diagnosed with stage 4 neuroblastoma at just over two and a half years of age. Our family had thought that we have already faced the worst when I was diagnosed with bowel cancer whilst I was pregnant with Olivia. It was unfathomable that my child could then be diagnosed with cancer. Olivia had a difficult start to life as my diagnosis meant that she had to be delivered early in order for me to have surgery and commence treatment. She was born ten weeks early and it was touch and go for the first few days of life. She spent many days in NICU with treatment for pneumothorax. She was a fighter from the start and she continued to grow stronger and stronger in the seven weeks that she spent in hospital (we left hospital on the same day following my surgery).

Olivia continued to thrive and suffered no side effects from being born so early. We welcomed Oli’s little sister, Sarah, into the world when she was just over two. When Sarah was six months old, we noticed that Olivia was not herself. Our usually bright, bubbly and active little girl became very lethargic and unwell. We had also noticed bruising around her eyes that became progressively worse. I had taken her to the doctor on a number of occasions over the course of about three or four weeks with doctors saying things like - ‘she probably bumped her head’ or ‘it’s probably a virus’. We finally took her to the hospital. By this stage, Olivia had bilateral bruising and was struggling to breathe. She was diagnosed with pneumonia.

When I inquired about the bruising, finally one of the doctors took notice and ordered a CT scan. That was when our world came crashing down…suspected neuroblastoma. We were immediately flown via air ambulance to Sydney Children’s Hospital in Randwick where Olivia underwent several tests over a number of days which confirmed her diagnosis. Her prognosis was poor as the disease had spread throughout her little body, mainly in her bones with the primary tumour on her spine.

The ensuing months saw Olivia endure an intensive treatment program, including five rounds of chemotherapy, a bone marrow transplant and radiation. Following her treatment she went into remission as scans showed no evidence of disease. Olivia continued to face a barrage of tests and scans to monitor her condition over the next 15 months, which is when we were told that she had relapsed and her condition was now deemed incurable. The prospect of losing our little girl was simply unbearable, so we continued to fight this insidious disease with everything we had whilst ensuring that Olivia could sustain good quality of life. We didn’t want to see her suffer any further. Despite Olivia’s very poor prognosis and after much consideration and advice from doctors, we made the decision to embark on further chemotherapy treatment, desperately hoping that this would improve her condition.

As her six year battle continued, Olivia endured countless treatments and tests and faced it all with the most incredible courage and resilience. Sadly, she relapsed several times but we never gave up and neither did she. We continued to try other treatments, including novel chemotherapy protocols and MIBG therapy. We even travelled to Germany where Olivia underwent immunotherapy for six months. In 2012, we travelled to the USA so that Olivia could participate in a clinical trial that targeted a particular mutation. Oli’s quality of life was always our priority, so we opted for treatments that enabled her to live as normal life as possible and with the hope she might be cured. We needed a miracle!

On our return from the US, Olivia began to deteriorate. Her belly began to swell and in our heart of hearts, we knew this was not good. We had further scans which revealed that she had multiple tumours on her liver. We were given the most devastating, heartbreaking news that Olivia had only weeks to live. Even now, I really can not put into words the unbelievable devastation we were feeling…after six years of fighting and fighting hard, all of our hopes had been crushed in that moment. Our beautiful, precious Olivia slipped away only ten days later on August 14th 2012 with my husband, James, and I by her side. She was the most loving, caring eight year old girl with the most infectious giggle and an incredible love of life. She absolutely adored her sister, Sarah, her BFF, the colour purple, fairies, reading and writing but she will always be remembered for her incredible passion for dance that transported her to another world. It was not uncommon to see her dancing around the ward or skipping and twirling up to the hospital.

Olivia filled our lives with so much love and joy and we will forever continue to be inspired by the amazing strength, determination and courage of our beautiful Oli.

Jo Turnbull shares her daughter, Tess’s journey through Neuroblastoma

At the age of two years and four months, Tess was diagnosed in October 2010, after being unwell for a couple of weeks. We live in regional NSW and were flown to Sydney Children’s Hospital the next day. After several tests, including a biopsy of the tumour, which was growing out of her left adrenal gland and was now the size of a rock melon (and yes, I ask myself all the time, how could I not see that?) it was confirmed that she had Stage 4 High Risk Neuroblastoma. We also later discovered that the tumour contained the MYNC gene. More bad news!


After initial chemotherapy, which she responded incredibly well to, and an operation to remove as much of the  remaining tumour as possible, we were due to move to the next phase of treatment, which was the stem cell transplant. Four days later, I received a call from hospital to say that her doctor wanted to see us immediately and my heart sank in complete fear and dread. I instinctively knew that it was bad news and looked at this beautiful bald, but active and relatively well looking child sitting in front of me and sat alone in our room at Ronald McDonald House and contemplated what was ahead.

The truth was that the disease was back and was already rampaging through her body once again. The remains of the original tumour were growing and there were “spots” on her skull, her abdomen and it was in her bones and bone marrow again. As all this information was reverberating around my head, I again looked at Tess playing on the floor in the doctor’s office, and with a mix of utter shock and disbelief thought how this news somehow seemed worse than the day she was diagnosed. The statistics that I had been reading since her initial diagnosis had been quite clear, kids who relapse with Neuroblastoma have very little chance of survival. I rallied myself as best I could and determined that statistics do not know my daughter or me. I had to have hope and had to fight harder than before.

The stem cell transplant was cancelled and a course of “recovery chemo” was recommended and we set of on this path again. Initially it abated the progress of the disease, and this allowed us two separate visits home, which I now know were like gems of brilliance in a dark cavernous mine that seemed only to be getting further from any form of light or hope.

During our second visit home, I noticed two lumps on Tess’s head and once again my heart sank with silent despair, as they seemed to appear within a few short hours. We were back in hospital within days and flown out to Sydney Children’s Hospital once again. The news from her treatment team was devastating and offered no hope. We were given a rough estimate of six to nine months life expectancy. Little did we know as we sat in that room, listening to this unfathomable news on that Monday in May 2011, that Tess would be gone 12 days later. On Saturday 14 May 2011 Tess took her final, hard fought for and painful breaths, three weeks before her third birthday. Irreversibly broken and sad beyond despair, she was gone.

Ten years later, I’m still breathing, although initially after she passed, I truly did not even feel like I knew how to do this. Tess was feisty, funny and had determination to burn. She loved hard and fought every day of her life and I try to honour her memory every day by doing the same.

Helpful Resources

Redkite offers a significant amount of resources including connect groups for Mums and Dads. They offer counselling and some financial assistance. 

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Author: Payal Sangwan

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