Education a lifeline for sick kids

THE sign on the front door of Keegan Quinney's home tells part of the story: ''Stop. Think. Are you ill? We have a child that must not get sick.'' Keegan and his parents wrote the sign when he was four because he was sick of being sick. What it doesn't say is that if you are ill and visit, he will develop pneumonia within a few hours and be rushed to the Royal Children's Hospital, where cysts will develop on his lung for weeks on end.

Keegan, 15, who suffers from a rare immunodeficiency disorder called hyper IgE Syndrome - there are only four known cases in Australia - has spent months at a time in the RCH since he wrote the sign. Five years ago, his right lung was removed. There have been recent complications, including 1.2 litres of fluid (15 millilitres is normal) around his heart, which keeps coming back after being drained. The disease also affects bone development and means he looks about 10 years old.

Any hospital stint less than four weeks is a bonus, he says, so this year has been especially tough, as he spent four months from April to August there.

When a child is in hospital so much, they usually miss huge amounts of school. But thanks to the RCH Education Institute's program, Keegan, along with more than 1700 other chronically ill children, is able to continue studying in hospital.

The program caters for children who meet certain criteria, including expected hospitalisation of five or more days, six or more expected annual admissions, and 15 or more expected annual outpatient appointments. A team of nine full-time and six part-time teachers are employed, and eight volunteers are either retired or former teachers.

When Keegan, a year 9 student from Trinity College, Colac, is very sick, he can't study. When he's recovering from treatment in hospital, his eating tray and bed double as a desk and chair. Some days he's only able to study for 15 minutes; sometimes his class runs for an hour or more, depending on his health and the work involved.

Like many, Keegan, so prone to infection, is restricted to his room. ''If it wasn't for the teaching here I'd be so far behind,'' he says. ''It doesn't make up for the work I miss at school or my friends, who I miss heaps, but it makes going back to school easier.''

Trinity College's wellbeing co-ordinator, Mick McCrickard, says Keegan, the only student out of 780 with a chronic illness, will find years 10 to 12 easier because they are less dependent on teacher-led learning.

It also helps that Keegan's mother, Susan Quinney, a former lab assistant, can help him with his school work in hospital and at home. Keegan has two adult half-brothers and one adult half-sister ''so luckily Keegan can be my main focus'', she says.

While Keegan's condition won't go away - he may need a lung transplant soon - it is treatable. He admits to wanting to be a doctor or a vet ''because medicine is all I know'' and according to McCrickard, ''Keegan is capable of achieving anything he sets his mind to''.

Ross Dullard has taught Keegan at the RCH for the past three years and says Keegan's self-motivation is his outstanding quality. ''Give him a book and he reads and understands the work. He's also inquisitive and asks loads of questions,'' he says.

Dullard teaches one-on-one as well as small multi-age group sessions comprising four to six students. No day is ever the same, as patients may be there one day but be discharged, have medical appointments or be too sick to attend the next.

When Dullard first meets new students, he contacts their school to supply the work that will be covered in their absence, and meets medical staff and social workers to determine the amount of study they can handle while in hospital.

Often students do little or no work on admission, but as their treatment kicks in, they are increasingly able to study.

Teachers design sessions based on patients' needs. ''Some days it may be 10 minutes and then setting kids a task. Other days they may be in a small group session that runs for up to two hours. It also depends on the demands of the day … how many priority patients are on the wards and in need of education support,'' Dullard says.

Students also need, where they are able, to take part in school assessments. Dullard has just finished marking VCE practice exams that a couple of year 12 students in the hospital have been doing. ''There's always a couple of VCE exams happening here every year,'' he says.

Dullard, 30, who previously taught at secondary schools in Victoria, the Northern Territory and Britain, says that in mainstream education, rapport between teacher and student is built up gradually. ''Connections with students here are fractured and, like all teaching, you sometimes hit a wall, but it's getting over that wall that's fantastic,'' he says.

The program has developed over time. The executive director of the hospital's education institute, Glenda Strong, says the unit's original mandate was to use technology to keep children connected to their home schools, with teachers sending homework to the hospital.

Strong, who taught in state education for 30 years and was regional director of Barwon South-Western Region's 141 government schools, says advances in technology and a boost in funding from the Department of Education and Early Childhood Development has allowed the program to expand. In June, the institute secured annual funding of $2.6 million until 2015 and its teaching program now incorporates aspects of the hospital's award-winning environment, including the Meerkat enclosure, aquarium and giant Creature sculpture in the foyer.

In addition to government funding, the institute receives $165,000 annually from the Fight Cancer Foundation to support education for cancer patients. KOALA (Kids Oncology Leukaemia Action) Kids, a philanthropic organisation, raises a further $85,000-plus yearly for music, art and play therapy as well as school holiday respite for healthy siblings of children undergoing treatment.

Strong's daily mantra is ''Clinicians at the RCH see the children and young people as 'patients'. I see them as 'learners'.'' But she's aware some kids at RCH do better than others, both in attitudes to their health and study. Some get more support from home, and support from home schools varies.

''It means that one-on-one teaching must be quality teaching at its best because then it is the equivalent of being in a classroom for an extended period of time with 25 other students,'' she says.

But Krissy McConnachie, whose son, Jordan, 9, has cystic fibrosis and diabetes and spends two out of every eight weeks at the RCH, says short-term one-on-one teaching ''isn't enough for a child who is going to be in and out of hospital until he finishes school''.

Krissy, who has a four-year-old son with a learning disability and a husband who works offshore - a month on, a month off - is not able to give Jordan unbounded support because of her other responsibilities. She's worried that because of the threat of infection, Jordan can't attend the hospital's group sessions ''so he gets little interaction and little tuition''.

Jordan, in year 3 at Cambridge Primary School in Hoppers Crossing, has been taught by Emma Fraser, 26, for the past four months. Fraser, in her fourth year with the RCH Education Institute, says she wouldn't work anywhere else.

''Some of the children here cope with so much, but what's so fascinating is that most of the time they really want to learn,'' she says.

She acknowledges the teaching environment has its challenges. She's talking about Jordan's room, complete with the intravenous drips, collection of pills and regular interruptions by medical staff.

She's also talking about the Hoyts bean bag cinema, where daily screenings of current kids' films are shown and where Jordan admits he'd often rather be.

Krissy says she's trying to stay relaxed ''as Jordan is young and his school teacher says he's on track. They've been very supportive, sent Emma work for him to do and let his class know when he's expected back, as returning to school always makes him nervous.''

Not all schools are as supportive as Keegan Quinney's school, whose principal regularly visits him, or Jordan McConnachie's, where he's welcomed back every time he returns.

Jordan Manos, 10, was diagnosed with rhabdomyosarcoma - a cancer that affects muscles attached to bones - in 2009. As a seven-year-old, after 42 weeks' chemotherapy and radiation treatment, he struggled with returning to school in a wheelchair and with no hair. But when his mother, Sarah, concerned ''that Jordan had gone from a boy who loved school to one who hated it'', rang his school principal, she was told that ''he was just one of hundreds of students who needed support''.

Last year in March, Jordan was a month into a new school, Weeden Heights Primary School in Vermont South, when the cancer returned, this time requiring 50 weeks' treatment.

Small, pale and matter of fact about his illness (''The radiation keeps burning bits of the inside of my body and has given me this terrible cough''), he has just returned to school part-time for term four having missed all of terms two and three.

This time returning hasn't been so hard because his year 4 teacher organised Skype sessions with the RCH teachers so Jordan could regularly ''see'' and keep up with his friends in class while in hospital. His six-year-old sister, Grace, who is in year 1 at her brother's new school, is regularly asked how her brother is going. ''We now feel a part of Jordan's school's community,'' Sarah says.

Jordan's physician, Associate Professor John Heath, who works in the RCH's cancer centre, says Jordan was initially despondent about learning in the hospital and wouldn't co-operate. ''The interaction he now has through Skyping and iPads has created a necessary continuity as Jordan's cancer will require life-long monitoring,'' he says.

Jordan doesn't want to discuss the hospital teachers except to say ''they're fine''. He wants to talk about meeting Prince Philip at the Queen's opening of the new RCH in October last year. ''He asked me what I wished for most and I told him I wished the long red light we always have to stop at for ages before turning right into the hospital would go away.''

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