When doctors told Labor MP Jennifer Houston “we believe it's cancer” she was stunned.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Zarah, 15, the youngest of her six children had always been active, healthy and “rarely unwell”.
Now she was lying in a hospital bed in Launceston and blood tests had showed she was seriously unwell.
Zarah had been tired after dance practice, had some back pain that went away after a couple of days, a cold that persisted and was pale.
“I thought 'oh this could be a range of things you really need to see a doctor’,” Ms Houston said.
“Zarah is a really good student she's academically minded she participates in a wide range of activities and is on the student leadership board.
“Teenage kids are always running around involved in a range of things and it was getting to the end of the year and she was busy writing assignments and speeches."
Blood tests one Friday in November last year set off alarm bells and early the next Saturday morning she was told to immediately go to the hospital emergency department.
After a series of x-rays, and CT scans, doctors told Ms Houston there was a huge mass on Zarah’s chest and because there was no paediatric oncologist available in Tasmania at the time they were sent to the Royal Children’s Hospital in Melbourne.
“We arrived at the Royal Children's Hospital on the Sunday and had a very senior paediatric oncologist examining her that day and she was admitted that night," Ms Houston said.
After days of further tests the diagnosis finally was that Zarah had stage four Hodgkin’s lymphoma.
“It took almost two weeks to get the full diagnosis and the initial treatments," Ms Houston said.
“This wasn't in its presentation typical of Hodgkin's lymphoma though the profile did fit with her age.
"So none of it was visible.
“There was nothing in any of the normal places such as a lump on the neck.
“At the hospital she said to me “oh well you know I've been having night sweats for the last week’ and I thought why didn’t you tell me... your mother about it?
“The fact that she'd actually had a cold that hadn't gone away was unusual.
“I think that it's important for parents to be aware that your child can have a very aggressive form of cancer and there's not necessarily any outward indications of it."
Ms Houston said because the mass was on Zarah’s chest it impacted her breathing and she could not have anaesthetic to allow for a port to be put in for treatment.
“It was rough for her when they eventually did the biopsy because of the mass on her chest. They had to give her a blood transfusion because the red cells were very low and her white cells were very high.
“So they had to treat some of the symptoms before they could start chemotherapy.”
Ms Houston is reluctantly speaking publicly as a warning to other parents.
Zarah, a student leader had been busy preparing for end of year school activities and showed none of the early classic symptoms of Hodgkin’s lymphoma.
“It was a rapidly growing and aggressive tumour,” Ms Houston said.
“So they did say when we got her diagnosis, that had she been there five weeks earlier they might not have been able to pick anything up.
“So it went from probably a six week timeframe here from nothing to stage four cancer.”
Zarah is in year 10 and is half-way through her course of chemotherapy.
She is studying online and goes to school for debating and history and other classes when she is well enough.
She has lost all her hair but has adjusted well. An uncle in Nigeria has sent her a braided wig and she has become skilled at painting on eyebrows.
Zarah has weekly blood tests to check her blood count and immunity.
A bandage on her arm covers a PICC (catheter) line through which chemotherapy is delivered.
“She doesn't want to fall behind with school - fortunately most of her treatment has been over the school holidays to date," Ms Houston said.
“It's been isolating when she's in the hospital because there's no wi-fi at the hospital so she can't get online to do school work or watch a movie and when her immunity is low she can’t meet her friends but she can chat online with them when she’s at home."
Ms Houston is hopeful Zarah will not have to have radiation treatment.
“They hope to avoid having to do radiation because radiation is more likely to leave lasting damage than chemo does,” she said.
“In young people you are so worried about the long term damage that can be done to their bodies and of course the long term damage being done to their fertility. So there are other layers of risk.”
The early signs from treatment are encouraging.
“We’re at a point now where there's been some positive results from the treatments, the tumours have shrunk,” Ms Houston said.
“It is a waiting game.
“But we do know that it's responding, it hasn't spread any further.
“It’s all heading in the right direction.
"She’s not in pain as much anymore but it's difficult to tell with the chemo whether the pain is the treatment or the disease."
Ms Houston took leave from parliament for the final two weeks of last year but was ready to fly home if needed.
She says being a parliamentarian is a bit like being a parent - she is always on duty.
“I was in Melbourne and able to watch parliament as I sat by Zarah’s bed,” Ms Houston said.
“The great thing about technology is you can work almost anywhere, I can actually be sitting in a hospital room on my laptop watching parliament and participating in discussions and meetings.
“It's been a really informative process, around the experiences in the health sector here and the experiences and the challenges and the struggles when you've got a really very sick child.
“My husband and I are very impressed with how brilliant the health staff are.
“Even with the lack of resources the staff are brilliant. They are really professional, caring, compassionate people that are really doing their best without the resources the bigger hospitals have."
Ms Houston says she will fit in her parliamentary duties around Zarah’s treatment and is grateful to friends and family, including her mother, a cancer survivor, for supporting Zarah.
"This is stage four. This is as bad as it gets. But the recovery figures are really good," she said. “We just hope she will be alright."
Ms Houston said while the prognosis was good she still worries about Zarah’s future health.
“I mean you always have that voice in the back of your mind that says this is really serious, not all kids survive this” she said.
Due to Zarah’s cancer diagnosis she decided not to consider a shadow portfolio at this stage, instead concentrating on her electoral work.