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.

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