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.

Leave comment
  • Ritchie’s story: Caring for a child with cancer and Down syndrome

    In January Ritchie Farrugia was told his six-year-old daughter Bella had Acute Lymphoblastic Leukaemia also known as ALL. Bella also has Down syndrome and at the time of diagnosis, Ritchie had already been her full-time carer for the last four years. Cancer Advisor spoke to him about being a dad in a children’s hospital ward and how Down syndrome affects cancer treatment. What’s it like being a dad in a children’s hospital ward? The first few months I stayed at the hospital full-time with Bella. My wife’s back is not too good, not that mine was great but, it was […]

  • Our Cancer Journey: Team Bella – Never give up!

    In March of 2014, our family was thrown onto the oncology roller coaster when Bella (aged four), was diagnosed with Acute Lymphoblastic Leukaemia (high risk). She would complete two and half years of chemotherapy bringing her into remission. Unfortunately, Bella relapsed in March 2017, eight months post treatment.     Bella would endure another eight months of intense treatment (including more intense chemotherapy followed by two bone marrow transplants). During her treatment, as her mum, carer and advocate, I decided to document her arduous journey. To provide awareness about childhood cancer and in doing so, provide hope, comfort and inspiration […]

  • What to pack for the hospital

    Hannah was diagnosed with acute lymphoblastic leukaemia when she was in the eighth grade. In her YouTube video channel (USA) Even More Mermaids Get Leukemia, Hannah and her mum share what to pack for hospital. A few of the items they suggest include: a blanket, face mask, room freshener, throw up bags and slippers with a grip. Please note: Some content contains references to medical treatment; these shouldn’t be considered medical advice. Always speak with a health professional about medical decisions.   Cancer Advisor has a range of resources on hospital information, but we’re always looking for more content. Leave a comment below, share your […]

Comments

Comments will appear below.

What do you think about this topic?