It has been a while since I posted – apologies to the wider AusMumpreneurs – I have many excuses that hinge around a busier than ever event season that started with Cairns Indigenous Art Fair, went straight to Cairns Festival, Cairns Amateurs and most recently, the 15 day Australian Men’s Masters Hockey Championships – which incidentally is one of the world’s biggest sporting events. Oh and in the middle of all that lot, Cairns Central launched its Resident Stylists program – of which I am one-half of the Pip duo – will talk about that next time.
Now, onto a more serious topic – I am going to dedicate this post to a friend and business associate – oh, and fellow AusMumpreneur, Sacha Maujean. For all of this year Sacha has pretty much had to put her business on hold while she fights for her family and the survival of her youngest daughter Rumer. I would love you all to take time to read about Sacha’s journey and if you can in some small way, please offer her your encouragement and support.
When Rumer Maujean, aged two and a half, was diagnosed with neuroblastoma cancer on Christmas Eve last year, she was given a 50 per cent chance of survival. Her mother, Sacha was told her very aggressive treatment would last approximately nine months. Both mother and daughter were flown to Brisbane within hours of diagnosis and have been living there ever since. Having surpassed the nine-month mark (September) doctors have since advised Sacha that Rumer will need to undergo at least another 6-12 months of treatment.
“I didn’t know it back then, but her diagnosis triggered the start of post traumatic stress disorder (PTSD) for me. Having your child diagnosed with cancer is very traumatic, and the consequent treatment that follows increases the trauma. I knew about this disorder of course after studying a psychology degree at JCU, but I thought it would never happen to me. I also thought childhood cancer would never happen to my children. After talking to many oncology parents during the first few months in hospital, they all told me to look after myself as most parents develop the condition.”
Sacha brushed all advice aside. “My only focus was, and still is, Rumer. In short, the past 10 months have taken their toll. I have endured what no parent ever wants to endure. I have witnessed heart breaking and traumatic treatments performed on my little baby girl nearly every day. As a parent, it is usually my job to protect her, to comfort her, and yet here I am every day helping the nurses and doctors hold her down while she screams in terror, and literally strapping her down and carting her off for tests, scans, needles, chemotherapy, radiation therapy, and risky surgery. Her little tear streamed face looks me straight in the eye and pleads with me constantly. No parent, no child, should have to go through this.”
According to Sacha, before Rumer was diagnosed she was a happy, feisty and well-adjusted little toddler. Sadly, cancer has changed her. She now suffers from acute anxiety attacks and particularly, separation anxiety. “I try so hard not to let her see me cry, I want to remain positive always. I believe Rumer picks up on positive energy and it can only be good for her. I try to remain happy and positive at all times around Rumer. I take her for a walk in her pram in the bush as often as possible, letting her soak in fresh air and get some sunshine.”
When she does eat, Sacha says she is determined to only feed her organic food. “Rumer grew up in an organic household. Raising my girls in a chemical-free environment is very important to me. Hopefully when we can return to Cairns we will rent a little house in the rainforest off the grid, with no pollution, noise, or Wi-Fi. We will grow all our own food and get back to nature. Rumer’s cancer has changed our lives forever. It will be a lifelong battle keeping her cancer-free.”
As an oncology parent in Brisbane, Sacha has met and made friends with many others ‘in the same boat’. It is a supportive community however Sacha says it has also been very traumatic to witness the deaths of at least 12 children from cancer in the past 11 months.
In terms of their living arrangements, Sacha said that too has had its fair share of difficulties. “Initially our accommodation in Brisbane was at a cancer support premises. We only spent a few weeks there, but the encompassing feeling of cancer and death was too much for me. I thought to myself that if we didn’t get out of there, we were going to die – so we moved, and it was the best decision we ever made.”
Sacha and Rumer are currently living in share accommodation with a lovely family. Trying to access the best accommodation has been difficult. “We don’t know anybody in Brisbane, but thankfully have made friends with a lovely family that have taken us in and offer us so much support and give us that warm and friendly family environment to live in. We are so grateful to this family.”
While Sacha has the majority of her heart and energy focused on Rumer’s recovery she has another, older daughter, 11-year-old Romany who has continued living in Cairns with family, but without her mother or sister for nearly a year now. “I have been trying to fly her down to Brisbane as much as possible, but it is very expensive. Rumer’s health and emotional demeanor improves dramatically when her sister is here with us. My emotional demeanor also improves dramatically when our family is back together again. The three of us are used to living together in our house in Cairns and enjoying a very loving and close relationship. “Every time Romany joins us in Brisbane, she dotes on her little sister, plays with her, looks after her, and attends all daily hospital treatments.”
Sacha’s challenges are many at present. Aside from the emotional strain is the unwanted financial strain. “I have had to put our home on the market as I simply cannot afford to keep it anymore. It is sitting in Cairns empty, and I cannot afford the mortgage or the upkeep. I was enjoying some success with my little home based business MY GYPSY CHILD naturally organic baby products. I commenced this business when Rumer was a baby so I could work from home and spend time with her. I began the business for Rumer as she has very sensitive skin and all main stream baby products gave her a rash. I had to close the business when Rumer was diagnosed. It remained closed for months, until eventually I had to reopen it as I have a large business loan to pay out,” she said.
The extended treatment required for Rumer’s recovery is because her tumor is wrapped around major arteries, making it impossible to remove. It has definitely shrunk, up to 70 per cent, but cannot be completely removed. Thus far Rumer has had to endure six rounds of intense chemotherapy, lengthy surgery, bone marrow transplant (stem cell rescue) and radiology. She will spend the next six to 12 months undergoing a very specialized treatment that was trialled in America called Immunotherapy antibody treatment – ch.14.18. “The specialized treatment will hopefully kill any remaining cancer cells in her body. She may have to live with her tumor for the rest of her life, but as long as it is dormant and not active, this should not affect her. The immunotherapy will also retrain her immune system to identify and attack cancer cells, hopefully preventing relapse,” said Sacha.
As a form of cancer, Neuroblastoma has a very high rate of relapse. In Australia only about 1 per cent of all cancer research funds goes to childhood cancer. Neuroblastoma is purely a cancer in children, usually occurring in children aged from birth to 5 years. It is very aggressive and fast growing. It needs very aggressive treatment. Rumer was ill for three months before she was finally diagnosed in December. Sacha took Rumer to four different doctors trying to find out what was wrong with Rumer, none of the doctors tested Rumer for cancer.
“I will do anything in my power to increase Rumer’s chances of survival. I have sourced a private specialist doctor in Brisbane who is an expert at nutritional and environmental medicine. He will work with Rumer for the next year ensuring that we are giving her the best possible chance of remaining healthy, strong, and alive. This specialist will take a sample of Rumer’s blood and send it to Germany where it will be analyzed for mirco-nutritional insufficiencies, environmental toxicology, epigenetic triggers, allergies, immune deficiencies and hormonal imbalances. Germany will then report with a complete analysis of Rumer’s blood and our specialist will develop a treatment plan for her. I am absolutely determined to make Rumer cancer free, and keep her that way. This process is extremely expensive, each blood sample sent to Germany costs nearly $2000. I am selling my house to try and help pay for this treatment for Rumer. But much more funds are desperately needed,” said Sacha.
If there is someone who would like to help Rumer and her family during this difficult time, please donate at www.gofundme.com/rumer
About Pip Miller, Pip Miller PR
Pip Miller is a publicist, content producer and stylist in her home town of Cairns. She also happens to be a mum of five children ranging in age from six to 19. Her business, Pip Miller PR was established in 1994 and will celebrate its 21st anniversary in June. With experience comes understanding and Pip is adept in the art of bringing a story to life, along with the importance of good quality photographs and imagery.
This knowledge has also helped nurture a styling career that began almost 30 years ago when she cut her teeth in the world of media as a cadet journalist with Australian Consolidated Press.