Cancer at just 10 months old
Elsie Lee runs laughing laps around the house and digs up worms with no clue that she could easily not be here at all.
The weight around her parents’ necks – that their playful 2-year-old has a 50-50 chance her cancer will return and next time there are no treatment options in New Zealand – shows no sign in her as she checks on the rabbits and chooks at the family’s Pukerua Bay home.
Elsie was 10 months old when a lump was noticed in her face.
The doctor’s initial diagnosis of mumps was soon proven wrong and the family were hastily packing for what they thought would be a stay of up to a month at Christchurch’s children’s hospital.
They ended up there for a year. Now Elsie’s beads – one for each treatment she received – number over 500.
It was in Christchurch they found her small body was riddled with cancerous tumours. The neuroblastoma that started in her kidneys had spread – the one on her face was just the visible one. The family are telling Elsie’s story now as they publicise their newly established non-profit group Neuroblastoma Childhood Cancer NZ (NBCCNZ). It aims to raise awareness, get earlier diagnosis, better treatments for patients, support families and connect people whose kids are affected by childhood cancers.
Its launch was timed for this month – Child Cancer Awareness Month – and Elise’s grandmother, Cate Williams, said they wanted to get more people on board for child cancer awareness event Go Gold For September.
Elsie’s mother, Natalie Phillips, can remember her daughter’s treatments – surgery, radiation, 10 rounds of chemotherapy, bone marrow transplant, feeding through a tube, immunotherapy and more – but she has largely forgotten how the horror felt.
‘‘It is pretty surreal. You just go into auto-pilot. People say, ‘you must be so broken and stressed’ [but] you just do what you have to do.’’
Elsie was going through treatment as she said her first words and took her first steps. Now she is doing another laughing lap of her Pukerua Bay home, grandfather in tow.
‘‘She has been like that the whole time,’’ her mother said. ‘‘She just loves life. She has felt quite sick . . . but she has always had a smile on her face."’
While clear of cancer now, doctors had given her a 50-50 chance of it returning and the only viable options would require treatment overseas.
‘‘Doctors said if that happens, there is nothing they can do. They can’t redo the treatment. That is quite scary.’’
Child Cancer Foundation chief executive Robyn Kiddle said neuroblastoma was an invasive disease that – like all childhood cancers – had a huge impact on children and those around them.
About 11 New Zealand children were diagnosed with neuroblastoma each year, she said. It was the most common form of cancer for children in their first year and made up 10 per cent of all cancers in children aged from 1 to 4.
The foundation was working with NBCCNZ and hoped to bring it on board as a special interest group. NBCCNZ is holding a fundraising quiz at The Backbencher on Wellington’s Molesworth St on September 26, and a car wash at Pukerua Bay School from 10am on September 30.