Each year, about 50 Kiwi children are diagnosed with leukaemia. For one Rotorua family that devastating diagnosis came not once, but twice. As the Child Cancer Foundation marks its 40th anniversary, Suzanne McFadden talks to the McMillan family about how
a Kiwi family’s double hit of this devastating disease
They are four words Anne-Marie McMillan never wanted to hear: “Your child has cancer.” Living through it once was harrowing enough. But to be delivered that diagnosis twice was like a heartless form of torture.
Anne-Marie and her husband, Glen, still find it hard to fathom. They are parents in a typical Kiwi family living in Rotorua; she’s an early childhood teacher, he’s a maintenance planner, and together they have three kids – Kimberly, Josh and Natasha.
But what sets them apart from friends and neighbours is that two of their three children have had cancer – and the exact same cancer, even though there is no known hereditary or genetic link. “Basically, we were told that for both of our children to have it was simply bad luck,” Anne-Marie says.
Kimberly and Josh, the two eldest McMillan children, were both diagnosed with Acute Lymphocytic Leukaemia (ALL), although their illnesses were five years apart. The way the cancer affected them was different; the way their bodies handled the exhaustive treatment was poles apart.
But today, both children are happy, confident young adults who are clear of cancer – living their lives to the full, as much as they possibly can.
Kimberly, now 22, is a paediatric nurse, determined to “give back” after many years receiving hospital care. “I love working in the children’s surgical ward at Waikato Hospital. I guess I have an empathy for children who are sick and have to spend so much time in hospitals,” she says.
Nineteen-year-old Josh has just started university, studying for a degree in construction, although he dreams of being in the military, like his dad once was. But for now, the side effects of his treatment form a barrier.
Anne-Marie can never forget both of those awful moments when doctors revealed why her children were unwell. The first time was in 2003, when Kimberly was only six. “She was never a child who cried; she was always bubbly,” Anne-Marie remembers. “But she kept crying, saying her arms and legs were aching, and she was tired. We took her to the hospital, and they told us it was probably growing pains.”
But when the little girl’s aches and pains intensified, her mother took her back to the hospital. “To appease me, they did blood tests. When Glen came in, they told us that she had 96 per cent blast cells in her body. The next thing, we were in an ambulance to Starship.”
Blast cells – in Kimberly’s case, lymphoblasts – are abnormal, immature white blood cells that multiply in the bone marrow in an uncontrolled way and interfere with the production of other blood cells the body needs. They can then spill out of the bone marrow and accumulate in organs like the lymph nodes, spleen and liver.
Acute lymphoblastic leukaemia is the most common childhood cancer in New Zealand. Around 50 children aged between birth and 14 years are diagnosed with leukaemia each year; on average, 38 of them have ALL.
Kimberly’s diagnosis hit Anne-Marie hard. Her mum had died of cancer, on Anne-Marie and Glen’s wedding day. And now her eldest child – still a youngster – was facing the disease.
“It just turns your world absolutely upside down,” Anne-Marie says. “We didn’t know what the future would hold, even though we were told the success rate of treatment was good.”
Over the next two-and-a-half years, Kimberly would go through the rigorous treatment for ALL in both Auckland and Rotorua. The first eight weeks were spent on Ward 27B, the haematology-oncology ward at Starship Hospital in Auckland. All of the family – including toddlers
Josh and Natasha – were able to stay together at Ronald McDonald House.
When she returned home to Rotorua, Kimberly would travel back to Starship every Monday, often accompanied by Anne-Marie’s dad, Vern Hartridge. But a year into her treatment, Vern passed away – dealing another huge blow to the McMillan family.
“It was devastating for Kim, because she and Dad were very close,” AnneMarie says. The McMillan household also swelled by two, when AnneMarie’s younger sisters, Dannielle and Kayla (11 and 12 at the time), came to live with them. “It was a very busy time. But we drew on each other’s strengths. We would wake up and say, ‘We’ve got to get this done today,’ and that’s what we did.”
Kimberly only recalls “bits and pieces” of her treatment. “I knew I was sick, but I didn’t understand the extent of it,” she says. “I know I didn’t like the needles! They had to give me laughing gas to get anywhere near me. They don’t bother me at all now – being a nurse helps with that.”
She was in remission, and roughly halfway through her clearance period, when Josh suddenly fell ill in 2008.
Josh’s cancer presented itself quite differently to Kimberly’s. He didn’t have the aches and pains she suffered from. “He was pale and tired during the school holidays, but he bounced back,” says Anne-Marie.
An active, sports-crazy nine-year-old, Josh would typically be at the front of the field in school cross country runs. But on this day, he says, “I was lagging behind until I was more than a lap and a half behind everyone else.” The school phoned Anne-Marie to say they were concerned.
“Mum and her friend came and picked me up, and told me they were taking me for icecream,” he says. (“We didn’t want to frighten him,” Anne-Marie remembers.) Then they took him to Rotorua Hospital, where blood tests showed his platelets were low, so he was sent to Starship for further testing.
Josh remembers the day so clearly: “I was wearing black guitar pyjamas… Mum was sitting on my left, Dad was on my right, and I was watching a James Bond movie.” He was in Ward 27B, where his elder sister had spent so much time, waiting for the results of a bone marrow test.
“That’s when it showed up,” AnneMarie says. “He had 36 per cent blast cells.” Glen and Anne-Marie were devastated; Josh, knowing all that his sister had been through, “curled up in a ball and cried”.
“It was such a humungous shock to know we were going to go through it all again,” says Anne-Marie. “But at the same time, I guess, we felt a little bit more prepared for what lay ahead.”
The McMillans were relieved that Josh’s care was overseen by the same oncologist that Kimberly had
– Dr Ruellyn Cockcroft. “She is an amazing specialist and she had a lovely relationship with our family already,” Anne-Marie says. “She said it was just as much of a shock to her that two children from the same family had ALL. It’s very rare. When Josh was diagnosed, they did genetic tests, but they couldn’t find any link between the two kids. It was just bad luck.”
They also discovered that Josh did not have standard ALL – he had an abnormal X chromosome in his leukaemia cells which made him a highrisk case. “I’ve always been special,” he quips. With his high-risk status, and the complications that developed, Josh received treatment for almost four years – a lot longer than his sister.
And yet, he says, he wasn’t “very fazed” by the hundreds of medical procedures he went through. “I didn’t fight anything, like needles,” he says.
His bravery is authenticated by his collection of more than 900 “Beads of Courage”, presented to him by the Child Cancer Foundation; each bead representing a procedure like chemotherapy, an experience like hair loss, or a milestone in his treatment.
Josh lost his hair three times; Kimberly once. Medications were hard on both children – and the rest of the family. Especially dexamethasone, a corticosteroid used as part of the treatment of ALL, which Kimberly and
Josh would take every month, for five days in a row. It affected their moods – but again, in very different ways.
“Kim got very angry on it, while
Josh became depressed and hardly spoke during those five days. But they were both very hungry!” Anne-Marie laughs. Kimberly craved spaghetti, while Josh hankered for hash browns and chicken nuggets.
“They coped amazingly well.
We’re very proud of them. They went through so much, being constantly poked and prodded. But they have become very resilient and courageous.”
Josh’s list of complications – and ongoing problems – is long. While in treatment, he suffered a perforated bowel, infecting much of his body, and he lost a lot of weight. His long-term side-effects include liver fibrosis, portal hypertension, and splenomegaly – an enlarged spleen – which attacks his platelets. His blood doesn’t clot well, and he bruises easily. It means Josh shouldn’t play contact sport, but it was difficult convincing an athletic teen not to be active. He defied medical advice to play hockey, go mountain biking and now does boxing training. “I do a lot of stuff that doctors say I shouldn’t. But I’m still a boy,” says Josh, who goes to the gym every day to keep up his fitness so his body can fight off common ailments, like a cold.
He still makes his mum nervous. He’s broken a shoulder mountain biking, broke his tailbone skiing, and somehow broke his heel while the family were at Disneyland in Los Angeles. “I get told off by Mum, but I’ve learned not to tell her everything I’m doing,” Josh says.
Both Kimberly and Josh spent their first year of treatment off school, but continued learning through the Northern Health School, which provides educational support for children who aren’t well enough to attend. Teachers came to visit them at home, and Josh says he became more academically-inclined during that year.
The kids missed their friends, and outings. “Once Mum sneaked me and two friends into the movies. We put masks on when we were in there,” Josh says. “Nana would take me for little trips, like going to the garden centre.”
Glen’s parents, Joyce and Ray, were cornerstones in the family’s support network. Joyce, who was a nurse, would spend two to three days a week staying with the family so that Glen and Anne-Marie could continue to work. They were determined to keep some normality in their lives.
Anne-Marie says the experience was often hard on Natasha, who had to watch her siblings go through “some scary times”. She admits she sometimes feared her youngest daughter would also fall victim to leukaemia.
“Tash went through a period of having a lot of headaches, and we worried about her. I sometimes panic when any of the kids say they’re feeling unwell or they’re tired, and I think, ‘Oh my God, are they having a relapse?’ You can’t help feeling that way – they’re your kids,” she says.
Even though the family is still haunted by this “bad experience” in their lives, Anne-Marie says they have made wonderful friends from it. “There’s so much support for families going through this,” she says.
Anne-Marie formed a bond with another Rotorua mum, Barb Richardson, whose daughter Holly was going through cancer treatment at the same time as Kimberly. The girls continue to be good friends. Then Barb became a family support co-ordinator for the Child Cancer Foundation, and worked with the McMillans when Josh was diagnosed with leukaemia. “She was always at the hospital, offering support,” Anne-Marie says.
Another woman who had an impact on the family is Cath Mott – who was a children’s outreach nurse at Rotorua Hospital and a volunteer for the
Lakes branch of Child Cancer when the children were sick. “She’s always checking up on them, even now,” Anne-Marie says.
“Child Cancer were fantastic to us. Anything we needed, they sorted it out for us. Travel and food vouchers, ready-made meals, phone cards for the kids while they were in hospital, and catch-up tutoring. It all made a huge difference to us. The parent dinners are nice, when you’re having a rough time and you can share with others.”
It’s Anne-Marie’s career goal to one day work for Child Cancer. “I’d love to be able to help families like ours,” she says. “Everything we’ve been through has definitely made our family stronger. I think we could face just about anything now.”
“We’re very proud of them... they have become very courageous.”
LEFT: Kimberly (far left) in 2003, when she was about three months into chemotherapy treatment, and her brother Josh in 2008, approximately six months into his treatment. OPPOSITE: Josh and Kimberly today, with mum Anne-Marie.
ABOVE: The siblings in April 2017 at Kimberly’s Bachelor of Nursing graduation. RIGHT: Josh met racing driver Greg Murphy in 2014 on a CCF day out. OPPOSITE: A family photo taken at Tarawera Falls in 2016, and Josh’s Beads of Courage.