A chef and food scientist from Gisborne who had run out of options at home. Emma’s account of a CAR-T journey that took real determination from the whole team — in her own words.
Emma
A routine check-up before a planned move home turned up lesions throughout Emma’s body — “my body lit up like a Christmas tree,” as she describes it. The diagnosis was aggressive multiple myeloma.
Emma had trained in food science and then as a chef, and was living in Melbourne with her husband George, planning a move back to New Zealand to open a restaurant. The check-up came just before that move. She is plain about what she was told: the prognosis is generally five years… my life is a ticking time bomb, essentially.
Over roughly six years afterwards she worked through the lines of treatment available to her in New Zealand.
By the middle of last year she had exhausted them. CAR T-cell therapy was not available to her at home.
“I’d exhausted all treatment options in New Zealand.”— Emma
The lead came from her community. On a myeloma community page she found someone in a similar position who had recently traveled to SinoUnited Health in Shanghai. She reached out, and an online call with Dr. Lily Zhou’s team followed within weeks. After that call, Emma says, the path she needed to take was clear.
Affording it was the immediate obstacle. Her community in New Zealand rallied and fundraised the cost of getting her there and treating her. What struck her first about Shanghai was the size of it; over the following days, how clean it was, and how safe. She was met at the hospital by Dr. Zhou, who was holding flowers.
“She feels like a hematologist and a friend.”— Emma
Cell collection began the day she flew in. It did not work. Three attempts failed while her myeloma was active, and a bridging medicine was used to buy time before a second course of collection was attempted. Emma is candid that she did not let herself hope during that second attempt.
She says it took a while to let herself believe it had worked — and that it wasn’t until she was home in New Zealand, doing ordinary things again, that she was able to take it in. Today she is in complete remission.
“I do have one regret — I wish I did it sooner. If you are in the position to do it… just go.”— Emma
Emma’s decision to travel for CAR T-cell therapy was reported in the New Zealand Herald, alongside why specialists there want the treatment available at home.
Emma was treated for multiple myeloma. Learn about CAR T-cell therapy for this condition.
Every patient’s journey is unique. The experiences described here are personal accounts and are not a prediction of results for anyone else.
A short eligibility check is the first step. It asks only for basic contact details and your diagnosis — your records are then reviewed by our hematology team.
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Tim
An author and lifelong cyclist with high-risk myeloma, who couldn’t access CAR-T at home.
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