By Lani Reti, NZ

5 minutes

My husband, Tawhai, was diagnosed with myeloma in 2019 when he was 29 years old. We were young and busy raising our family; we had never heard of myeloma. At the time, our four children were; 3, 4, 5 and 10 years old.

Before diagnosis, Tawhai was an incredibly successful sheep shearer. It was hard, physical work. One day I received a call from his boss telling me he had collapsed on the shearing board. We thought he was just exhausted from work, and he returned to shearing the following week. It happened a second time, again; we assumed that he had simply pushed himself too hard. When it happened for a third time, I knew something wasn’t right.

Our local general practitioner (GP) quickly recognised something was seriously wrong. A few of his blood tests were abnormal, and he was referred to a haematologist. After weeks of tests, including a bone marrow biopsy, we were told that Tawhai had myeloma.

One of the hardest things we faced was telling our children. We have always been an incredibly close family, and Tawhai and I made the decision from the very beginning that we would be open and honest with them. We didn’t want them to be frightened by the unknown or shocked by what was happening. We involved them from the start in whatever we could. They came to clinic visits, learned about treatment, and they understood why sometimes they had to keep their distance when dad’s immune system was low. Being transparent made those conversations easier as they grew older and began to understand more about myeloma.

As Māori people, we also became aware that our people are disproportionately affected by blood cancer compared with non-Indigenous people. Something we had never known before Tawhai’s diagnosis.

Tawhai underwent chemotherapy followed by his first autologous stem cell transplant (AuSCT) just before COVID hit New Zealand (NZ) in January 2020. Thankfully, the transplant gave him four and a half years of remission. Life slowly became normal again.

During this time, we both got offered jobs in Victoria and we moved our lives over to Australia. Then history repeated itself, Tawhai collapsed again while shearing. I knew immediately what it meant.

We returned home to NZ where his treating team in Christchurch quickly confirmed that his myeloma had returned (relapsed). He underwent a second autologous stem cell transplant (AuSCT), but this time the remission lasted only six months.

One afternoon, while enjoying a barbecue at the beach after school, Tawhai went to skim a rock across the water, but his arm simply didn’t follow through. He turned around and his arm was limp. We later discovered that the myeloma had spread much more aggressively than what we had first realised.

He tried the treatment lenalidomide, but he didn’t tolerate it well and his myeloma continued to progress. He then received pomalidomide, which was the last funded treatment option available to him in NZ.

Our haematologist suggested that we consider moving back to Australia because there were treatment options available that simply weren’t accessible in NZ. We had only just bought our first home, and the kids were settling back into school; the timing couldn’t be worse. Suddenly, we were faced with decisions that would affect our entire family: whether to sell our new home, whether to relocate, and, if so, how we could make it work, or whether it would be possible at all. I felt like I was walking around in a fog.

By December last year, we became desperate. Treatment had stopped working and Tawhai had developed severe pneumonia followed by sepsis. We were told he had weeks to live and believed that this would be our last Christmas together.

I knew I would never be able to forgive myself if I didn’t do absolutely everything to ensure we gave Tawhai the best possible chance. So, I contacted the haematologist in Sydney again. There were still so many unknowns, including whether our Medicare eligibility from previously living in Australia would still allow us to access treatment. I had even thrown our Medicare cards away because I never imagined we’d need them again.

The response from the haematologist was immediate. We were told ‘you need to be on a plane this week, as next week might be too late’. Leaving our kids with Tawhai’s sister and not knowing how long we would be away was the hardest part. We had never spent more than two nights away from them. Despite everything, they understood. They knew this was our only chance to save their dad’s life. I couldn’t have been prouder of them.

Once we arrived, we had four days of stabilising Tawhai with blood transfusions. Four weeks later, Tawhai started daratumumab. For us, it felt like winning the lottery. As his myeloma became more controlled, Tawhai was then prepared to receive CAR-T cell therapy. As bridging therapy before the CAR-T, Tawhai received a new immunotherapy called talquetamab. He travelled to Melbourne for his T-cell collection before returning to Sydney, then back to Melbourne again to receive his CAR-T cell infusion. Tawhai was one of the first patients in Australia to receive the government-funded CAR-T treatment for myeloma called CARVYKTI.

It has been thirty days since CAR-T, and Tawhai is in remission. Seven months ago, we were making funeral plans. Now we are preparing to fly Tawhai home. Words will never fully express how grateful we are to the teams in both Sydney and Melbourne. Australia gave us access to treatments that simply weren’t available in NZ. Because of that our children have been given more time with their dad.