There are moments in life when something so big, so dramatic occurs that the life you once knew is irrevocably altered. Learning your toddler has cancer has the ability to do just that. It takes profound fighting spirit to take your child on the journey through chemotherapy and remission experiencing setbacks and side effects and come out the other side positive and thankful. But this is exactly what one mum has done.
Words CLAIRE ARMSTRONG
Hearing the words “your child has cancer” is something no parent ever wants to hear, but the sad reality is that cancer kills more children than any other disease in Australia. A realisation newly separated Perth mum of two, Kerrin Hampson found herself facing on July 2, 2010.
The cheerful and unassuming Perth librarian sits across from me in a small, well-lit meeting room and poignantly describes her hatred of the month of July, the diagnosis anniversary clearly a painful memory.
“He had been sick for what seemed like forever,” she tells me of her son Marley, who at 14 months old started displaying vague symptoms of chronic tiredness and loss of appetite.
“I thought maybe he was going through some kind of growth or development pattern, that he was tired and behaving out of character for normal reasons. Then my dad noticed a swollen lymph node at the back of his neck and the fevers started – fevers that Panadol couldn’t settle. This was the first time I took him to my regular doctor. By this stage he had been unwell for over two weeks. But we were sent away with no explanation.”
"I was frustrated. I started to think it was me, that I was crazy. To me Marley was obviously ill and no-one could tell me what was going on."
Kerrin considered glandular fever or Ross River Virus due to the family’s proximity to a local Lakeland as possible illnesses plaguing her once cheeky and lively toddler and spent hours searching online for answers. She returned to the GP but the outcome was the same. Then, Marley stopped walking.
“Marley had been able to walk from 11 months old. When he stopped walking, that was scary. I took him to Princess Margaret Hospital, our local children’s hospital. But again, there was no answer,” she says.
“I was frustrated. I started to think it was me, that I was crazy. To me Marley was obviously ill and no-one could tell me what was going on.”
Finally, after Marley had been ill for four weeks and steadily declining, Kerrin went to collect him and his brother Morris (2.5 years) from care and found him listless, feverish and refusing to eat. Exasperated she packed her floppy haired little boy into the car and drove him to Fremantle Hospital Emergency Department.
“To me he looked sick. And the nurses obviously suspected something too because they arranged for the paediatrician on call to come and see us. He gave him the once over and admitted us straight away. They did a blood test that night. This was the first time a blood test had been ordered.”
The next morning a group of doctors came to explain they had sent off the blood samples to rule out Leukaemia. Kerrin recalls that it had been her dad that had first mentioned Leukaemia as a possibility but she had shrugged it off thinking kids don’t get cancer and all the media reports about lifestyle choices and genetics just didn’t apply to their family.
The results came back positive.
Kerrin and Marley were ambulance transferred – because he was deemed too fragile to be driven – and admitted to PMH.
“We were taken down to the basement of the hospital, ward 3B – kids haematology and oncology and put in a room,” she steadily recounts the moments her world spun of its axis. “We were immediately surrounded by doctors and nurses and all sorts of test were planned and I signed so much paperwork I can’t even recall.
“I had just been told my child has cancer, my brain was not working. But they bombarded me with information. And the only thing I got out of it was that, in Australia, the successful cure rate for Marley’s cancer after five years is 95 per cent. That is good but I didn’t know how to process it.”
Kerrin admits much of that time is a blur. She remembers it was a Friday when they arrived at PMH and Marley needed to be stabilised with blood and platelet transfusions before treatment could begin the following Monday. Kerrin has since been told that given his age and the advanced stage of the cancer, Marley would not have lasted much longer without medical intervention.
Marley was officially diagnosed with Acute Lymphoblastic Leukaemia – standard risk. He was 15 months old. And so began the daunting, relentless and tumultuous fight for Marley’s life.
“He was a very sick little boy on admission, with more than one virus, plus the cancer ravaging his body,” Kerrin describes. “He was so lethargic they were able to place his cannula without struggle.”
“I will always be indebted to blood donors. The difference in him after he received the blood was amazing. I lost count of the amount of transfusions Marley needed over the course of his treatment but it would be easily more than 10, maybe as high as 20.”
The decision for Marley’s treatment was to be a three part process – induction to shock his little body into responding to treatment followed by consolidation to reduce the number of leukaemia cells in his body. If the leukaemia remained in remission after the first two phases, maintenance therapy would begin. Steroids were a big part of the initial treatment causing Marley to experience rapid and significant weight gain and an insatiable hunger.
“He always had food in his hand!” she jokes.
Time seemed to take on a new meaning at this point, sometimes getting through the next five hours was as terrifying as the prospect of fighting this invasive disease for the next five years. The first six months of Marley’s treatment were devoted to the induction and consolidation processes. The remaining time, almost three years, were dedicated to his maintenance phase with Marley receiving chemotherapy every day during that time. Kerrin explains because boys are at higher risk for relapse than girls, the doctors favour giving them several more months of treatment.
Kerrin admits Marley coped well with most of his gruelling treatment from the port implantation, chemotherapy, nasogastric tube, the lumbar punctures, antibiotics, IVs and transfusions. There were only a handful of times the chemotherapy made him violently sick mainly due to missed anti-nausea medication. Although anticipated, it was still difficult when his hair fell out and it has never regrown quite the same, it is now sparse and curly. And Marley got sick far more than other patients, catching any cold and flu going around which landed him back in hospital and in isolation.
During treatment Marley also developed blood sugar issues, which have since gone, but resulted in some scary incidents bringing him out of anaesthetic and also saw him collapsing and blacking out at times. He also has a lasting, relentless cough from bacteria in his lungs for which he is still seeking treatment.
By February 2013, Marley was two and a half years into treatment and at the encouragement of his doctors began kindy at the local primary school. His first day of school was less than two months after he woke up on Christmas morning in hospital, in isolation, due to yet another infection. His school enrolment added a further dynamic to family life and another constant source of concern that he would contract an illness from his young classmates. A simple cold can kill a child with a severely compromised immune system.
Kerrin explains the agonising anxiety when Marley’s little body stopped fighting the way it was supposed to towards the end of his treatment and he become an in-patient more and more, sending around whispers of potential relapse.
As a single parent, Kerrin recalls the time Marley endured his treatment as very solitary and overwhelming, simply being pushed along by life, forced into a new routine focused around hospital and specialist visits, test results and the endless worrying challenges cancer treatment brings. She coped with the situation because she had no other choice. At home she was juggling the needs of the household and another young child. Meanwhile, her full time job had to be put on hold as she took unpaid leave. Financially, emotionally and physically it was draining and unrelenting. She understatedly recalls the time as being ‘quite hard’. Kerrin is nothing short of modest and resilient.
As a single parent, Kerrin recalls the time Marley endured his treatment as very solitary and overwhelming…at home she was juggling the needs of the household and another young child…her full time job had to be put on hold as she took unpaid leave. Financially, emotionally and physically it was draining and unrelenting.
“The thing that made things easier at home was that the kids were so little. The boys didn’t have expectations of me as a parent or jealousy towards one another. I think if Marley was to be diagnosed now the boys are older it would have been an entirely different and more difficult experience.” Kerrin has this amazing ability to find the positives in any situation.
Thankfully his age also worked in his favour during treatment response and Marley never experienced a relapse. But three years is an incredibly long time for such a little body to take chemotherapy. Marley finally finished treatment in August 2013, a month earlier than protocol due to issues with neutropenia and his bone marrow which had stopped working. And while his story is a success story and his doctors don’t believe they will ever see him back on the ward, the story doesn’t end with his remission.
His treatment has accounted for half his life and he is still attending bi-monthly oncology appointments and regular heart checkups due to a known side effect of a particular chemotherapy drug. Marley has been left with some behavioural issues possibly due to the chemotherapy that was pushed into his spinal fluid to save his brain from cancer. He also sees an Occupational Therapist weekly to assist with socialisation and to give him strategies to help with a constant fidgeting. There is also the heightened possibility of learning difficulties which will be assessed as Marley grows up.
“This September will be two years off treatment. I feel like I have come through the other side like a grief process. I am only just getting to a point that I am not worried about a relapse. It is really hard not to worry,” Kerrin says.
“I look at him now and wonder who he would be if he actually lived his toddler years like a normal healthy child and who I would be as a mum if I had never had a child with cancer. It is hard to think about and has been hard to accept that I can’t change things.
“But Marley having cancer has changed my perspective on life and definitely taught me to be grateful and appreciative of what I have. I had always taken it for granted that my kids would grow up healthy.”
These days Kerrin and her bright and lively boys spend a great deal of their spare time enjoying being together and giving back to the community. Marley become the face for the Children’s Leukaemia and Cancer Research Foundation in 2014 in the same year that older brother Morris decided for his 7th birthday in-lieu of gifts he would ask for donations for the research foundation.
Marley is now well enough to get out on the field and play football in a local team alongside his big brother and also participates in Little Athletics. He is quite the sportsman. The young family is also about to see Marley’s Make A Wish come true with a trip to Victoria to experience the majestic snow fields. Although Kerrin shares a private joke that she is not so keen on the snow aspect of the trip but the thrill on the boys’ faces and the life-long memories that will be created act as her lure.
"I remember being told that if a child has to have cancer then Marley's is the best cancer to have. But to me that is a flawed notion, nobody should get cancer, definitely no child.”
“I remember being told that if a child has to have cancer then Marley’s is the best cancer to have. But to me that is a flawed notion, nobody should get cancer, definitely no child. My wish is a cure for childhood cancer. I hope one day my wish comes true too,” Kerrin says with conviction.
“His journey has been long. He has made friends with other little kids on the ward that never went home again; that isn’t right, but he’s come out the other side with so much strength and empathy. I hope his future is bright and he achieves all he wants in life and any side effects from his treatment are taken in his stride. His cancer has taught us to live for each day, each moment. We don’t take anything for granted.”
Claire is a journalist of eight years across a range of publications and mother of two beautiful girls. She has a passion for all things parenting and a love of sharing stories about the parenthood journey.