Tosh’s story: how he helped end his daughter's cancer

After more than two years of chemotherapy, Tosh Nagashima helped end his daughter’s cancer. Cancer Advisor called him to talk about his family’s experience.

In March 2014 four-year-old Bella was diagnosed with high-risk Acute Lymphoblastic Leukaemia (ALL). After arriving at the Royal Children’s Hospital in Melbourne in an ambulance, Bella started chemotherapy immediately.

During treatment, Bella’s father continued to work full-time and take care of their youngest daughter Olivia while his wife Vanie spent day and night in the hospital. “After work I would visit Bella in the hospital every day,” he explains. “It was hard for her younger sister Olivia because she stayed with her aunties, uncles and grandparents, and missed her mum and sister. It’s a bit sad but you just do what you have to do. After I visited Bella, I would then come home to pick up Olivia at nine or ten o’clock.”

Two years of intense chemotherapy reduced Bella’s leukaemia to zero. But once the chemo stopped, the cancer cells came back because there was still diseased bone marrow.

Bella desperately needed a bone marrow transplant to survive. “When biological parents donate the chance of it taking is always reduced to 50%,” Tosh says. “Whereas with other donors the chance is in the high 90s”.

The search began for a donor – they needed to be in good health and aged 18 to 45. Two unrelated donors were suggested to Tosh and Vanie. However, one had hepatitis and the other was travelling to South America, which meant risking exposure to the Zika virus. It was a chance they were not willing to take.

Both Tosh and Vanie began taking the steps to do the transplant. They had to complete a full medical exam including chest x-rays, blood tests and medical meetings with doctors.

Vanie had her marrow harvested, but the transplant was unsuccessful. “It didn’t engraft in Bella’s,” Tosh says. “Then the doctor decided, ‘Okay Tosh is the next one up.’ So we thought we’d go ahead with that, even though it’s 50%. It was now up to me.”

A week before the procedure, Tosh had to inject himself with GCSF (Granulocyte Colony Stimulator Factor) which stimulates the Bone Marrow to produce stem cells. “Oh, it was very painful,” he says. “I had to inject myself around the stomach region and that hurt.”

On the day of the procedure Tosh’s blood was removed via a needle in one arm. Stem cells were collected with a blood separator and the remaining blood was returned back to Tosh. The four-hour procedure was carried out at Peter MacCallum Cancer Centre. “It was fine,’” Tosh continues, “I was just very tired, but recovered straightaway. I took a week off work just as a precaution.”

After waiting anxiously for the results, Tosh was left thinking about the limited treatment options left for his little girl. “We didn’t know which option was next,” he says. “We were told that we might have to travel to the United States to begin trials. The options were reducing if this didn’t work out.”

However, the trip to the US was never needed. In October of 2017, the bone marrow transplant was successful. Bella now had her Dad’s donor stem cells and her maintenance treatment began.

“Initially we had to stay with my in-laws just to adapt because we had to administer 15 medicines and their place was more convenient. But now we’re at home which is quite good. Bella only needs two medicines now as well.”

Tosh is proud to announce that Bella, now nine, is in remission and was able to go back to school in March this year. A big highlight for Tosh was the recent Father’s Day morning tea at the school.  At the same time last year, Bella was in hospital and Tosh had taken a photo with just himself and Olivia. This year he had both his girls together.

Looking back, Tosh says that seeing his daughter in hospital was the lowest point in his life. “It was very distressing, because she had to go through that, not us,” he says. “There was nothing we could do because it was up to her and the doctors. We couldn’t really do anything other than support her.”

But Tosh did do something — he was there for his daughter when she needed him the most.

Cancer Advisor has a range of personal stories, but we’re always looking for more content. Leave a comment below, share your own story or recommend a resource.

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