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Life in Germany

Olivia and her family arrived in Germany late August 2010.

Although Olivia and her family returned to Australia in February 2011, the following account written in early September 2010 by Olivia's mum, Kirsty illustrates the difficulties faced by families taking their kids overseas for advanced medical treatment. 

"Our decision to head to Germany sooner than initially planned was prompted by the unpredictable nature of this horrible cancer.  We didn’t want to wait until September and risk facing the possible news that Olivia’s disease had progressed and realising that perhaps the treatment in Germany might only serve little benefit to Olivia.  This disease does not wait for anything!  Also, given that the only options here in Australia are palliative, I was convinced that Germany was the only possible solution and that we had to get there quickly.

So far, we have settled in fairly well.  We are staying in the hospital owned “parents’ house” which is about 7kms from the hospital.  It was built to accommodate the parents who had children in the paediatric hospital right next door but that hospital closed earlier this year and the new paediatric ward is located at the hospital at Greifswald University.  

Accommodating up to 8 families, it has all of the basic comforts – a bathroom, small kitchenette, a sofa bed (which feels more like a concrete slab) and a separate room with two beds for the girls.   It’s fairly small but comfortable enough for the time being.  There is also a small playroom, a common lounge and kitchen area and small laundry for guests to share.  As for transport, the hospital organises a shuttle for parents and patients to and from the hospital. 

The paediatric ward at the hospital is all new and all oncology patients have their own room and bathroom which is a very nice change for us!  There is also a common playroom for the kids which is well stocked, albeit with German games, books and toys!  The girls actually enjoy spending time in there as it gives them an opportunity to socialise with some of the other young patients. 

There are currently five British families on the ward whose children are also being treated for neuroblastoma using the antibody therapy.  It has also been somewhat comforting to be able to share our experiences with families who understand and have travelled down the same road as us with their own children.  It’s also been a relief to have the company of other English speaking people!  The language barrier can be frustrating at times.  The doctors and a couple of nurses speak English but other than that we have encountered very few people in Greifswald who do speak English.  However, we are picking up a few words here and there and both Olivia and Sarah can now count to 10 in German and when in doubt, we just mime!

Our first week in Greifswald was spent in hospital so that Olivia could undergo a series of tests and scans to assess her current condition and to determine the appropriate course of treatment.   We were extremely relieved to learn that the scan results have shown no evidence of disease progression.   

The doctor here is hopeful for Olivia and believes that she is a very good candidate for the antibody therapy.   All up Olivia will have 6 five week cycles of the antibody therapy.  She will spend approximately 2 ½ weeks having treatment in hospital.  She will then have a 2 ½ week break but will need to take further medication.

The ch14.18 monoclonal antibody (also known as immunotherapy) is the main component of Olivia’s treatment.  They are proteins made in the lab and are designed to bind to neuroblastoma cells.   The antibody is called chimeric because it is genetically engineered to consist of 30% mouse-protein and of 70% human protein.  Ch14.18 is a new kind of cancer therapy that targets the destruction of cancer cells without destroying nearby healthy cells, unlike chemotherapy and radiation.  It is hoped that Olivia’s own immune system will be able to kill residual tumour cells with the help of the antibody.

This antibody therapy offers us new hope.   It is a miracle that I stumbled across this treatment when I did and on Facebook of all places.   I had previously researched the ch14.18 antibody and had hoped that this would be a suitable treatment for Olivia but was devastated to learn that this treatment is not available to her in Australia.  Ch14.18 has been widely researched in the US but Germany is the only place in the world that is offering such treatment to relapsed neuroblastoma patients and it offers a 20% increase in survival.  Immediately we knew that this is where we had to go to have any chance of saving Olivia’s life.  Now that we’re here, I have absolutely no regrets about our decision and know that she is under the best care.

So it’s early days but Olivia has tolerated the treatment reasonably well thus far.  The treatment offers good quality of life which is one of the reasons we pursued this treatment.  At her stage of the disease, ensuring good quality of life is paramount.  She will experience side effects from the treatment but they are all reversible.  Pain, fever and flu like symptoms appear to be the most commonly experienced side effects.  However, we have been told that they are well managed by the doctors and nursing staff.  So far we have found the staff to be very caring and helpful and really feel that Olivia’s health is in the best hands. 

Olivia is a very strong and determined little girl and has handled all of this with a maturity beyond her years.  She understands what needs to be done and hopefully, she will return to Canberra next year healthier than ever.  As Olivia’s parents, James and I couldn’t be more proud of our beautiful girl."