There's "a great need" for more Leukaemia Foundation units in Melbourne for Tasmanians

When Tasmanian, Samantha Freeman, went to Melbourne for a life-saving bone marrow transplant in December 2014, there was (and still is) a dire shortage of patient and family accommodation available. During the four months she spent away from her home and children, at Blackmans Bay, south of Hobart,

During the four months she spent away from her home and children, at Blackmans Bay, south of Hobart, she could only stay a few days in one of the Leukaemia Foundation’s three units at Preston, and that was during the lead-up to her transplant.  

After Samantha was allowed to leave hospital following the transplant, the Foundation still didn’t have any accommodation available. 

“I understand that if the Foundation’s accommodation is full, you can’t boot people out. You just have to wait until someone is discharged. So there is definitely a great need for more units,” she said. 

Samantha and her carers – her family and a friend – had to “move between tiny boutique hotel rooms, which did not always accommodate a wheelie walker” before finally getting accommodation provided by another not for profit organisation.  

“I had to wait two months to see my children because there was nowhere for them to stay,” explained Samantha, now 46. She has an adult daughter and two foster children, now aged six and three. 

Since her diagnosis with chronic myeloid leukaemia (CML) in January 2007, aged 38, she has been on a rollercoaster – undergoing a range of different treatments, interspersed with periods of remission and relapse.  

Within weeks of her diagnosis, Samantha had to give up her full-time job as general manager of a small business, and due to fatigue (and muscle weakness), she could only manage working part-time for 12 months before having to give up work altogether.   

In June 2013, Samantha’s CML mutated to a different form of leukaemia and she had to be admitted for chemotherapy. She spent 100 days in hospital after fighting an infection, which led to emergency surgery, pneumonia and subsequent nerve damage.  

“I was sent home because I wasn’t progressing in rehab. When I came out, I had no body fat or muscle tone, I couldn’t walk and was confined to a wheelchair, I also could no longer live by myself and I moved in with mum and dad,” explained Samantha, who still needs a walker to move around. 

Apart from going to Melbourne for the transplant in late-2014, her treatment over the last eight years has been in Hobart, a 20-minute drive from home.  She returned from Melbourne in March this year (2015).  

“I’ve been in hospital seven times in the last 12 months and each time was debilitating. I have been doing rehab for just over a year and right now, I’m the best I’ve been in two years. I feel well enough and I’m getting stronger every day.” 

Samantha said the new Victorian patient and family accommodation centre in Melbourne was well located. 

“I would like to stay there if I need to go to Melbourne again. It’s nice and close to the hospital and I could walk the block to the Royal Melbourne. 

“Having a comfortable place to stay, with room for your children to visit, just makes it all more doable, and having support around you makes it all easier. 

“You don’t need things to be any harder than they already are. 

“The Leukaemia Foundation has been terrific,” said Samantha. 

She has been supported with accommodation, transport, and food and fuel vouchers. She also has attended support groups over the years and values the contact and assistance from the Foundation’s blood cancer support team in Tasmania.  

“Without this support, the journey would have been more difficult.” 

Foundation's unit in Melbourne - "a lifesaver" for the Gerke family

"I don't know how our family would have managed without the use of the Foundation's apartment. It just wouldn't be possible, and

After three weeks of tests – in her home city Launceston, as well as in Hobart and Melbourne – Summer Gerke was finally diagnosed with a rare form of blood cancer in January (2015).

She was only 19 months old and had been through the ordeal of having three bone marrow biopsies before her parents, Hayley and David Gerke, were told Summer had undifferentiated leukaemia.

“Only an estimated 20 cases of her condition are documented in the world and there is no standard treatment plan,” Hayley explained.

“It was neither ALL(acute lymphoblastic leukaemia) nor AML(acute myeloid leukaemia) but Summer had leukaemic cells in her bone marrow so the decision was made to give her AML therapy because it is more intense.

“After she had a good response to her first round of treatment, it was decided her greatest chance of a cure was to have a bone marrow transplant.”

Summer had to go to Melbourne for this life-saving procedure, which she had on 19 June.

When Summer and her parents arrived in Melbourne, all the Leukaemia Foundation’s accommodation was occupied, so they stayed in a commercial apartment near Summer’s hospital. The Foundation met this cost.

Later, the Gerke’s moved into one of the Foundation’s own apartments at North Melbourne where they expect to stay until the end of September when Summer can go home. She must remain in Melbourne until 100 days after her transplant.

“We didn’t even know these things existed before,” said Hayley about the Foundation’s provision of accommodation at no cost to the family.

“It’s just a couple of blocks – a 10-minute walk – from the hospital and the fact that it is so close is a lifesaver,” said Hayley, describing the location of the apartment.

“It’s so good that it’s so close. I can just walk up the street to see Summer and when she leaves hospital she’ll come home here to the unit for two months.”

Being so close is beneficial from a safety viewpoint too, Hayley said.

“Sometimes, during the 100 days, they have to go back into hospital and being here means we don’t have to traipse across town.

“We don’t have a car here and we don’t know our way around.

“And there are two big bedrooms, so when the other kids are here we can all stay here together.”  

Since January, Hayley has only been home twice, for four days each time.

Apart from the first month, while Summer was being diagnosed, and during her transplant, David, a self-employed builder, has continued working in Launceston, coming and going to Melbourne.

Hayley and David decided Summer’s older brother and sister, Izayah, nine, and Bella, seven, would stay in Launceston with Hayley’s parents. They occasionally going to Melbourne for the weekend to visit their mum and sister.

And when Hayley’s mum, Alice Austen, isn’t in Melbourne with Hayley, she’s home in Launceston with the kids.

“David and I thought it was better for them to stay in Tasmania as they are both busy with school and friends,” said Hayley.

“I don’t know how our family would have managed without the use of the Foundation’s apartment. It just wouldn’t be possible, and it all just gets arranged for you.

“Just being able to have your own space and your own environment means when the kids are here, we can pretend it’s home, and they can leave their things here between visits.

“And everyone’s quite happy to just stick around and stay in the unit together, rather than having to go out and be entertained.”