Connor Coster, 8, was first diagnosed with acute lymphoblastic lymphoma in Christchurch at age 4. Photo / Supplied
Connor Coster, 8, was first diagnosed with acute lymphoblastic lymphoma in Christchurch at age 4. Photo / Supplied
A Christchurch family is preparing to say goodbye to their 8-year-old son after a years-long fight with cancer that began before he even started school.
Connor Coster was 4 when he was diagnosed with a rare and aggressive form of acute lymphoblastic lymphoma with a Philadelphia-positive chromosome.
In the yearssince, he has undergone multiple rounds of chemotherapy, radiation, surgeries and a bone marrow transplant, and, incredibly, returned to school and friends in between.
After a 2023 relapse, Connor underwent a bone marrow transplant at Auckland’s Starship hospital. Photo / Supplied
But now, his parents Bobby Coster and Lisa Robertson say curative options have run out and the family is “living on borrowed time”.
“He’s in constant pain. He’s got these painful, itchy spots all over his body, almost like bruises. He can’t walk properly, he’s bedridden most of the time, and we’re on high doses of morphine and even trying CBD oil to bring him some comfort.”
A rare chromosome mutation made Connor’s cancer especially aggressive and hard to treat. Photo / Supplied
Connor underwent CAR T-cell therapy last year in Melbourne, Australia, in what initially seemed a positive turn in his treatment.
But not long after, doctors discovered his blood counts weren’t recovering as expected.
Further investigation revealed he had developed therapy-related myelodysplastic syndrome (MDS), a serious blood disorder caused by previous cancer treatment.
Doctors traced the disease to before his bone marrow transplant, meaning it had survived in his system undetected.
Friends and charities have rallied to help Connor create special memories while he can. Photo / Supplied
“There’s no cure for treatment-related MDS,” Bobby said.
“With time, it progresses into acute myeloid leukaemia. We were told a second bone marrow transplant would likely do more harm than good. It would increase the risk of relapse.”
Connor was started on lenalidomide, a drug considered the gold standard for MDS, but had to stop after developing painful ulcers and Sweet’s syndrome, a reaction causing blistering, inflamed skin.
“He’s dealing with so much,” Bobby said.
Despite constant pain, Connor’s family says he remains loving, positive and full of heart. Photo / Supplied
“The MDS, blood clots in his superficial veins, this ulcer that won’t heal, and the skin condition. If it were just the MDS, maybe we’d have a clearer timeframe, but right now it’s about managing symptoms day to day and trying to give him some quality of life.”
Friends and the wider community have rallied to support the Costers.
A Givealittle campaign launched by family friend Lisa Chalmers has raised funds to help the family create special memories with Connor in whatever time remains.
Connor Coster, 8, "just wants to live life and enjoy every moment". Photo / Supplied
Offers of help have come from a number of sources.
Uplift in Kind, a charitable initiative, has offered the family a helicopter flight.
Another organisation, Heartfelt, arranged for professional family portraits.
The family also hopes to take Connor to Rainbow’s End in Auckland if his health allows.
Some of Connor’s other wishes are to visit theme parks in Australia with his grandparents, go on a transalpine adventure to Arthur’s Pass, play a sport, ride in a glass-bottom boat and go fishing.
Bobby said the support has been overwhelming and deeply appreciated.
“We’re just trying to give Connor the best life we can for as long as we can,” he said
“People have reached out with so much kindness. It’s made a huge difference.”
Despite everything, Bobby said Connor remains a bright spirit.
“He’s the sweetest kid in the world,” Bobby said.
“He’s sensitive, chirpy, cheeky when he’s feeling okay. He’s affectionate. He’s always positive. Always smiling even when he’s in pain.
“He’s pure. He’s genuine. He just wants to live life and enjoy every moment.”
There is no timeline for what comes next, and his parents say they are focusing only on what each day brings – managing Connor’s symptoms and cherishing the moments they have together.
