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Room Two
by Linley Boniface
New Zealand is falling behind international standards in meeting the emotional needs of children with cancer. With the blessing of all involved, Listener photographer Jane Ussher spent a day in the heart of Starship hospital’s cancer ward. These are her pictures. The report is by Linley Boniface.
October 26 was not a good day for 13-year-old Memphis Pitman. After a particularly intense cycle of chemotherapy, he was still vomiting on the afternoon he was scheduled to leave Starship Children’s Hospital in Auckland.
Memphis vomited in the taxi. He vomited at the airport. He vomited in the plane. Hospital staff had asked if he’d like to stay another night, but he couldn’t wait to leave.
“He was as sick as a dog, but he did not want to stay in hospital,” says his mother, Natasha Sadler. “Memphis wanted to be with his family. He wanted to be a normal kid.”
Memphis hasn’t been a normal kid since August 21, when he was diagnosed with testicular cancer. The tumour was enormous – at least 10cm, by Sadler’s estimation – and he needed immediate treatment.
Before the diagnosis, Sadler had assumed he was just being a typical teenager when he started lazing around at home and slacking off at rugby practice. He had a sore stomach and wasn’t eating much, but a succession of visits to the doctor hadn’t found anything wrong.
It wasn’t until a family trip to a swimming pool that Sadler realised the changes couldn’t be put down to growing pains. “Memphis took his shirt off, and he was just skin and bone.”
Since his diagnosis, Memphis has spent more time in Starship than at home in Papakowhai, near Porirua. For two of his stints in hospital – the first of about nine days; the second of five – he was in Room Two in Starship’s cancer unit.
Room Two is a place of suffering and of healing. In this room, up to eight people sleep, eat, endure pain, grieve, cry, laugh, talk and wait for the day they are allowed to go home. Few families will ever forget the hours they spend in Room Two, with its jarring mix of the medical and the domestic: colouring books, IV drips, Batman pyjamas, syringes, soft toy dogs and nasal tubes.
The shared room has achieved a certain notoriety among the families of children being treated at the oncology and haematology ward. The ward’s other 10 rooms are all singles, and some families baulk when told that their children will be staying in Room Two. However, as the timing of cancer treatment is critical, they have little choice.
Room Two has four beds for patients and four camp beds for parents and other carers. One of the fold-out beds is half covered by a curtain, and is under the unit’s sole sink: whichever unlucky carer sleeps here hears a continual chorus of apologies from people washing their hands above the bed.
Flimsy curtains offer the only means of privacy when patients are vomiting or urinating into bedpans. Crying babies, restless toddlers, talkative teenagers and the beeping of patients’ monitoring equipment make it difficult to sleep. The conditions are particularly hard on teenagers, as studies have found increased recovery rates among adolescent cancer patients who do not have to share rooms with younger patients.
Patients who have no immunity after chemotherapy need to be isolated to avoid the risk of infection. If there aren’t enough single rooms, other children are transferred to general wards, away from the care of specialist oncology nurses.
On the Wednesday that Listener photographer Jane Ussher took the photographs on these pages, five patients were in Room Two at some stage: Memphis; Ashdyn Mitchell, aged two; Lahtel Pafalani, three; Sally Ainley, 18; and Ruby Seeto, 10.
Memphis was the only one who had travelled from outside Auckland to be treated. Wellington children with cancer have been treated in Auckland or Christchurch since the departure of paediatric oncologist Liz Hesketh in July. Wellington’s only remaining cancer specialist, Anne Mitchell, quit at the end of October.
Memphis has found it hard to be away from his eight brothers and sisters, and Sadler and partner Tatai Henare have relied on their close network of whanau and church friends to help out at home during the treatment cycles.
Sharon Seeto, Ruby’s mother, found the oncology staff at Starship wonderful but was not impressed with the conditions. “In our experience, it’s not simply treatment that cures the children – it’s positive energy, a positive mindset, a positive support group and a positive physical environment. That is where Starship falls short, particularly in regard to the oncology ward. Cramped, noisy and smelly does not create a positive environment,” she says.
Sheryn Murtic, Ashdyn’s mother, says that her son was upset to see other children vomiting. However, he loved the attention from other people in the room, while she enjoyed meeting other families. “It is horrible hearing all the stories, but you learn that there are people worse off than you.”
Ashdyn was diagnosed on September 21 as having a neuro-blastoma – a cancer of the nerve cells – in his stomach. He has 72 hours of chemotherapy every three weeks, and has also had two surgeries, four or five blood transfusions, scans, bandage changes, many injections and the insertion of a nasal tube. Murtic believes her son’s tumour has already reduced in size, and is hoping it will soon be small enough to be operated on.
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