Bailee White, now 24, with her fiance, Hamish Robertson, who suffered serious head injuries from a car accident last year. Photos / Supplied
"I feel like I'm dying". That's how Bailee White, then 15, described the breathless exhaustion and fainting episodes she'd endured for over two years - two years in which her GP put the Masterton teen's ongoing symptoms down to "home issues" and anaemia.
White was, in fact, riddled with cancer.
This is her story of a chance diagnosis, survival and surprise baby joy.
Bailee White knew something was wrong. When she was just 13, she began fainting inexplicably and often. She was so fatigued she couldn't manage climbing a couple of stairs without feeling out of breath and her once sunny, bright face was always pale, almost jaundiced.
"Someone asked me to describe my pain and I said, 'I feel like I'm dying," recalls White, now 24.
For two years, White and her grandma were frequent faces at her doctors' clinic. She told her GP it felt like her body was "shutting down". They kept telling her the same thing:
"It's home issues and anaemia," the latter of which is common in teenage girls and can be a rare symptom of Hodgkin Lymphoma.
"They phoned my mum and asked if there were any problems at home because I was a boarder at the local private school – so they assumed I had parent issues.
"I just kind of gave up," White tells the Herald from the home she now shares with her fiance, Hamish Robertson, 23.
Then, on a particular visit in the early winter of 2013, everything changed for White, who still recalls the day by date.
"It was the 8th of May and I walked in and they said I wouldn't be seeing my usual doctor."
Instead, White was assessed by an international locum visiting from America.
"She took one look at me and she was very, very concerned. She said, 'What have they been telling you?"
"I said, 'apparently, I'm anaemic and I've got a cyst coming out of my neck.'"
The visiting doctor's response was a shock: "You look like you have Hodgkin Lymphoma".
While cancer in teens and young adults is rare, accounting for 2 to 3 per cent of all cancers diagnosed in New Zealand each year, Hodgkin Lymphoma is the third most common. It affects the lymph nodes and is diagnosed from a biopsy of a neck swelling that hasn't responded to treatment for infection after two to four weeks.
According to oncologist and AYA (Adult/Young Adult) Cancer Network Aotearoa chair for Standards of Care, Dr Tristan Petitt, there's "a standard treatment pathway for unexplained neck swelling. The gland swelling is a red flag and primary care need to refer gland swelling for a biopsy beyond the four week time point. That's in all the diagnostic pathways that we have currently."
Petitt says while "it's hard to attribute every subjective symptom to a diagnosis in retrospect, the way Hodgkin Lymphoma tends to be diagnosed is painless swelling in the neck that is brought to primary care's attention."
White says her doctor identified the cyst but did not carry out any treatment or tests on it. But when she stood before the American locum, White said, "she'd seen enough that she knew."
Urgent blood tests were ordered and a radiographer was flown from Auckland to conduct an emergency ultrasound.
White says she will never forget his reaction: "You could see he was trying to keep a straight face but he was traumatised by what he saw": a spleen so enlarged he was worried the pressure of the ultrasound device would explode the organ.
Next, White met with a paediatrician at Masterton hospital who, on receiving the teen's test results told her: "You're on a flight tomorrow morning to Christchurch oncology."
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White had "extensive disease" by the time of diagnosis: Hodgkin Lymphoma stage 4B. The number identifies the disease in its most advanced stage, having spread to at least one organ outside the lymphatic system while the letter accounts for particular symptoms of weight loss, night sweats and fevers.
White says her oncologist asked her if she wanted to go through with treatment "because my body was so destroyed. It was riddled," she says of the tumours found in her lungs, spleen, liver and bone marrow.
"They just expected that even if they started chemo, I was going to die. They said I should have already been long dead by the time I went in. And I was feeling like I was already dead."
But she went ahead with a six-month course of chemotherapy, alternating between two weeks of treatment and two weeks of rest.
Four months in, an exhausted White, who kept up with her schoolwork throughout, says she "just couldn't do it anymore. It was just too draining.
"Because Hodgkin Lymphoma is fast-growing cancer, it has to be killed fast. You have higher doses in a shorter period of time," she explains.
But White found the strength to make it through.
By the time she returned to school, she was bald and had gained between 20 and 30kg. "It was definitely hard. I had my friends that stuck by me."
Beyond the visible physical impact, White's mental health was also affected.
"I remember when the hospital told me, 'You're all better now. You can just live your normal life.'"
"I tried," she recalls. "I went back to how everything was beforehand and I had a 20-minute panic attack. Because it's not the same. They didn't want to diagnose me with a mental illness or put me on medication because of my age - I was 16 at the time," says the former CanTeen ambassador who found guidance and friends in the service that supports young people living with cancer.
"I wouldn't say I was depressed. I had really bad anxiety. I felt depressed every now and again but it wasn't until I was 18 that I was diagnosed with medical trauma PTSD. By the time they diagnosed me I needed such help they put me on the highest dose of medication they could."
White remains on the medication to this day.
And while chemotherapy saved her life, its side effects mean White will forever be prone to cardiac arrest, kidney failure, pulmonary and lung issues plus uterine complications that meant she had to pull out of her nursing degree - something she pursued after being inspired by the incredible care of the nursing staff in Christchurch oncology.
Her fertility was also impacted by chemotherapy.
"The side effect they came across was that my eggs were drastically depleted," she says of the blood tests that showed signs of early infertility.
White was advised that if she wanted children in the future, she should consider freezing eggs.
When she met Robertson and decided to go ahead with this, two viable eggs were collected. But White says the couple was told "the chance of them surviving the thawing process to make an embryo was pretty minuscule".
White went through an unsuccessful round of IVF before having surgery last February related to her uterine issues.
Then, to her surprise, she fell pregnant naturally.
Her son's due date, May 12, is already an important day in White's calendar:
"Coincidentally, it's the same day I flew to Christchurch oncology to start chemotherapy."
As White awaits the arrival of the son she thought she might never have, she reveals her pregnancy has been marred by another almost tragedy.
A week after she and her partner learned they were to become parents, Robertson was in a car accident that put him in a coma and left him with serious brain injuries.
"In the beginning I expected to lose the pregnancy because of stress, " says White
"But his doctors and his rehab team just watched me over the weeks and watched me grow."
Robertson, whose first thought when he came out of his coma was of his son, was released from hospital in late March.
Unable to return to work due to his injuries, the silver lining to the couple's frightening ordeal is that Robertson will be able to spend more time at home with White, their miracle boy and share in a future this brave woman thought she'd never have.
Cancer in adolescents and young adults is rare, says Dr Pettit.
"In the 15-25 year age bracket, that decade of life only takes up 2 to 3 per cent of all cancers diagnosed in New Zealand per year."
Hodgkin Lymphoma (HL) in this age group is one of the more common cancers, behind carcinoma and germ cell tumours.
Hodgkin Lymphoma is also a "very curable cancer, even in its late stage," says Pettit, pointing to stage 4B as having an expected survival of 80 per cent, and "even better with recent analysis".
Petitt says the last two decades have seen progress made in the reduction of the side effects associated with Hodgkin Lymphoma treatment but that there is "still some way to go".
"... we know that some chemotherapy drugs that are very good at killing HL cells are associated with reduced fertility, or impaired heart or lung function, and at this point in time we have not found adequate replacement drugs for all. Instead, doses of these drugs have been significantly reduced over the past 10 to 20 years, and drugs have been substituted for other drugs in the same 'family' that have lower associations with infertility."
When it comes to symptoms and diagnosing Hodgkin, Petitt says this cancer "typically presents with swollen glands in the neck, or other body regions, and sometimes shortness of breath or cough associated with swollen lymph nodes in the chest. But it can also present with constitutional symptoms such as fevers, significant weight loss, and night sweats. Lightheadedness, fainting, weakness and anaemia can also be rarer presenting symptoms …"
He notes these symptoms can often suggest many other more common conditions in this age group, "so time and accumulation of other findings are significant, and often necessary before consideration of the significantly rarer conditions such as cancer in this age group is made."
And at the point of diagnosis, the type of biopsy is crucial: " ... core biopsy needs to be undertaken with the first biopsy, and not just limited to a fine needle aspirate, which can miss a HL diagnosis in this age group."
• CanTeen supports rangatahi / young people aged 13-24 impacted by cancer across Aotearoa. Whether they're dealing with their own diagnosis or cancer in their whānau. Like many charities, CanTeen was hit hard during the pandemic with many of its largest events and fundraisers cancelled. To find out more or to support CanTeen, visit canteen.org.nz.
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