Strength and the unwavering love of carers
Thousands of families across Sydney Children's Hospitals Network know all too well that anyone can become a carer, at anytime.
Tammy and Patrick, Teresa and Harry, are four of these people - all going above and beyond to care for their children with complex needs.
There are a million reasons to care and these are the reasons they do.
October 15 - 21 marks National Carers Week, a time to recognise, celebrate, and raise awareness about the incredible contributions made by the 2.65 million carers across Australia.
Tammy, Patrick, Robyn and Charli's story
On the night the nation stood together as the Matildas made history with a penalty kick, Tammy and Patrick felt worlds away.
Their two-year-old daughter, Charli, was diagnosed with acute lymphoblastic leukaemia (ALL) after a precautionary trip to the emergency department at Shellharbour Hospital.
Tammy had noticed spots and bruises on Charli’s legs and while the game was playing on the television, she began to complain about a sore month.
“We thought we were being completely over-paranoid. We took her there expecting nothing and then the news hit us so hard,” Tammy said.
It was in that moment that Tammy and Patrick became more than parents. They became carers.
Charli was rushed to Sydney Children’s Hospital, Randwick (SCH), the following morning for specialised treatment and care at the Kids Cancer Centre (KCC). She has been there ever since.
It has seen Tammy relocate from their Canberra home to be with Charli, while Patrick commutes between Sydney and the nation’s capital every week as their five-year-old twins finish the school year.
“The whole family unit is broken, really. It has been hard on my husband being away from a sick child, albeit in another city, so that takes its toll in another aspect,” Tammy said.
“In more than two months, we have had only two and a half weeks together at home. It is difficult for everyone.”
Since the diagnosis, Tammy has not been working to focus on being a full-time carer for Charli. Her life revolves within the walls of C2W and C2N, taking her to appointments, supporting her through therapy, and connecting with other families in oncology.
“Being a carer for Charli is an around the clock role and we spend the majority of time in the Hospital, but thankfully my mum has been here from Cape Town and that has been amazing,” she said.
“I feel so sad for Charli, seeing what she is going through is so awful and being so young she doesn’t quite understand what is going on. As her mother and carer, you just try to give her as much love and support as you can to try and take the pain away from her.”
While caring for a child in hospital far away from home can be an isolating experience, Tammy knows she is not alone because only a few metres away from her on the oncology ward sits another carer.
“I have met some inspiring people on this journey so far. It is inspiring and comforting being in a ward with families who are going through the same experience as you, I’ve connected with them and found it so helpful to hear their stories and know they understand,” Tammy said.
To me, carers are selfless guardians. They provide a source of unwavering love and are the physical and emotional comforters in the midst of so much pain. Their love and tenderness lights the path towards recovery.”
Tammy’s mum, Robyn, has seen this firsthand.
“As a grandparent, I come into this ward and I look at these mothers and fathers and I am just amazed at their resilience and strength,” she said.
Robyn describes her granddaughter as ‘the bubbliest, happies, and most carefree child you could wish for’ and one of the hardest things was seeing Charli lose her personality when she began treatment.
But with each day, Charli smiles that little bit more as she becomes familiar with the environment, treatment, and her oncology team. These moments of light give the family hope for the future, and they are beyond grateful for the care Charli has received.
“There’s lots of angels in this Hospital, that is for sure. We have been so impressed with the support and everyone takes a real caring aspect to the experience,” Tammy said.
“It was such an emotional experience when we shaved Charli’s head but so many of the nurses were there and spoke me through it. They all wanted to see her afterwards, they were clapping and saying how beautiful she looks. I am so thankful.
“Like every parent, I want Charli to have a happy, healthy, and long life. There’s a long road ahead and we will need to just keep trying to keep that momentum and strength going – just take each day as it comes. But I’m sure, we will have our happy little daughter back once this is all through.”
Teresa, Harry and Simon's story
The welcome to parenthood was full of unknowns for Teresa and Harry as their firstborn child, Simon, found it difficult to breath.
It was 17 months later that they received the devastating diagnosis of cystic fibrosis, a genetic condition that severely affects the lungs, digestive system and other organs in the body.
For nearly a decade since that moment, The Children’s Hospital at Westmead (CHW) has been their second home as 10-year-old Simon has needed inpatient stays and regular medical treatments.
By his side through it all has been Teresa, as not only his mum but also his carer.
First and upmost, I’m just a mum - a mother to four beautiful children. When you add cystic fibrosis into the mix, it can sometimes feel stretched,” Teresa said.
“Cystic fibrosis is heavy and it has changed our lives in so many ways. The most significant impact has been the strict medicine routine. It’s very repetitive and most days we just wish we didn’t have to do it anymore.”
Having a child with cystic fibrosis comes with a long list of daily tasks, these include taking nebulisers, inhalers, multiple medicines, and having physiotherapy. Simon is also pancreatic insufficient, meaning he needs to take Creon, a pancreatic enzyme replacement, every time he eats.
On top of all that, Simon was recently diagnosed with cystic fibrosis-related diabetes and now requires insulin inserted into his body daily.
With so many complex needs that come with the ‘invisible disease’ of cystic fibrosis, there are also invisible impacts on carers like Teresa.
“Carrying the mental load of cystic fibrosis is a minefield. I find myself feeling tired most days, and emotionally, mentally and physically drained,” Teresa said.
“It’s never easy watching your child go through these motions, it’s tough. We never envisioned our lives to have so much uncertainty and worry.”
Teresa describes her son as a kind-hearted spirit who will do anything for those around him. She is beyond proud of the person he has become, saying that his courage and resilience has helped shaped him into the young man he is today.
This is part of what makes being a carer the most rewarding job in the world for Teresa.
“Among the challenges and heartaches along the way, you get to see your kids grow and flourish,” Teresa said.
“The beauty about being a carer is that no matter how hard the task may be, when you empower those around you it gives them the belief and strength that things will get better.”