Those first few weeks with a newborn baby are some of the most precious moments of any parent’s life.
But for Michaela Flanagan, the first weeks and indeed the first year of her daughter Ciara’s life were some of the hardest she has ever had to endure.
Ciara Flanagan was diagnosed at 12 weeks old with neuroblastoma cancer, a disease that the Flanagan family had not even heard of but was to become a major part of their lives.
Neuroblastoma almost exclusively strikes infants and children and while it is the third most common type of childhood cancer after leukaemia and brain tumours, it is the leading single cause of cancer deaths of children under five with an average survival rate of only 50 per cent.
“I knew something wasn’t right with Ciara from about six weeks,” says Michaela.
“She didn’t have the normal wet nappies of newborn babies and she was a really fussy baby, which I put down to reflux. It was not until she contracted norovirus that our world started to unravel. This common gastric bug can be quite serious in someone so young and at eight weeks old, the doctors at Balmain hospital sent us Randwick where our journey began.”
“When we arrived at RPA Children’s Hospital we were still thinking that it was just a bug, but when the nurse took us straight through and called in an ICU consult, that was when we knew something was really wrong.
“At first we were admitted to the Infectious Diseases ward where nobody could tell us what was wrong with our baby girl. A couple of weeks and a roller coaster of emotions passed and we were sent home but asked to come back in for scans a couple of weeks later. It didn’t dawn on us at the time but the scans were being done to investigate a mass in her bowel.
“Finally the day for our results came. As every other family left the ward and the room got emptier and emptier we got more and more anxious wondering why we weren’t able to go home. We then saw a group of doctors and a social worker walking towards us – the news was never going to be good. We were told that Ciara had neuroblastoma cancer and that she needed to stay in overnight monitor her blood pressure. She would need a number of tests and procedures over the following week to stage her disease.”
“You don’t expect to hear the word cancer in the same sentence as your 12-week old baby. Nothing can prepare you for that. Our world pretty much came crashing down around us. Your first reaction is to think the worst, then anger at how this could happen to a tiny baby and once that had passed we said to ourselves that we just cannot let this beat us. We will beat it. It is not an option to lose this fight”.
For the next almost 12 months the Flanagan’s lives revolved around Ciara’s treatment.
She had eight rounds of chemotherapy and two surgeries. In between treatment anytime her temperature hit more than 38 degrees they had to go back into hospital for 48 hours to make sure that she was not suffering a blood infection or another life-threatening infection given her immunity was so low.
For seven days after her treatment Michaela and Aran had to change her nappies with disposable gloves due to the toxicity of the chemo. Given how small she was, to help her recover from the effects of the chemotherapy, Ciara was given injections each day for 10 days after her treatment to kickstart her body into producing the red and white blood cells she needed to get better.
“Finally after eight rounds of chemotherapy, two surgeries and numerous blood transfusions, we were told Ciara could come off her treatment. This was a time of mixed emotions for us. Joy at being told that she was winning the battle but also complete horror at the possibility that they didn’t get all the cancer or the cancer could come back.”
The road to recovery continued long after the treatment finished. Ciara was only able to get her first immunisations that most babies get at 6 weeks when she was 18 months old.
That put her at high risk from infection from a multitude of diseases. It then took many months for her to catch up on her immunisations and become fully immunised like the rest of her friends.
Once she had been off treatment for a year, Ciara was officially in remission something that was music to her parents’ ears.
“Despite this we still needed to have regular scans and monitor her bloods to ensure that nothing further developed. During treatment one thing that really suffered was her speech and it is something that is still being worked on with her now, but she has made great progress and is eagerly getting ready to start school next year.
“We know that Ciara was one of the lucky ones. Ciara is now 4 ½ years old and in remission, but there are other children who have not been so lucky. Along with another family who lost their beautiful daughter Sienna to neuroblastoma, we established Neuroblastoma Australia with the objectives of raising the profile of this terrible disease which is underfunded, raising funds for vital research and providing support and advice to parents and families who are or have been affected by neuroblastoma”.
Four years ago the Flanagan family started the Rozelle & Balmain Family Fun Day as a way of saying thank you to the local community and raising money for Children’s Cancer Institute. Over the past three years the event has raised more than $200,000 for research into childhood cancer.
“The support we received from our friends and family in the Rozelle and Balmain community was absolutely amazing. For the first 12 months of Ciara’s life we spent about 60 per cent of our time at the Children’s Hospital but with the homecooked meals, friends taking care of our son and the positive support we received, we somehow made it through the year”.
The Flanagan family, like many others, were woken up by the blast from the devastating fire at the convenience store on Darling Street, Rozelle on Thursday September 4, 2014.
“This year as well as supporting other families who are going through the nightmare of having a small child suffering from cancer, we are also supporting the Rozelle Fire Appeal that has been established at the Balmain / Rozelle Community Bank Branch of Bendigo Bank”.
The Rozelle & Balmain Family Fun Day is on Sunday October 19, 2014, at King George Park Rozelle. It features entertainment from Sam Moran and promises to be a great day out for kids big and small with live entertainment, rides, jumping castles, arts and craft activities, pony rides, face painting and loads more fun. For more information visit www.neuroblastoma.org.au