In January of 2014, the Howse family were a happy family running their own business in Collinsville, North Qld. Their nearly 4 year old son Connor had just started pre-school and their daughter Isla was a gorgeous typical 18 month old toddler.
After Connor had had a few sporadic temperatures and started walking with an unusual gait, his mum Rhiannon took him to the local doctor for a check-up and blood tests. As the results weren’t conclusive, she then pushed for an ultrasound of his hips – which would also show no abnormalities.
Connor didn’t improve or worsen over the next few days but at Rhiannon’s insistence, they got a referral to a pediatrician in Townsville – 3 hours from home – where he underwent further blood tests and x-rays. Once again, the results did not show anything of concern, so they were told to go home and return the following week for more tests.
By the next afternoon Connor’s health had worsened. When his mum asked him why he was crawling rather than walking his response was ‘my legs feel really dizzy’. He was then admitted immediately to Townsville hospital.
Rhiannon packed their bags with clothes for 3 days – little did she know that this would be the last time they were together as a family in Collinsville for 16 months.
After three days of tests and scans, Connor’s parents were told that he had numerous tumors in his abdominal area, pelvis, spine and right knee. The next day the Royal Flying Doctors flew Rhiannon and Connor to Brisbane for admission into the Oncology unit at the Royal Children’s Hospital and on February 13th 2014, Connor was given the official diagnosis of Stage 4 Neuroblastoma.
Their family was devastated – they could not believe that their family had been inflicted with this insidious disease again.
Rhiannon’s sister’s son Darcy (Connor’s first cousin) was diagnosed with exactly the same disease in May 2012 at age 6. At the time, the families were told neuroblastoma was not genetic and just bad luck as it was such a rare cancer. Darcy was treated at the Starship hospital in NZ and is currently in remission.
While most cases of hereditary Neuroblastoma occur sporadically, affecting individuals who have no family history of the disease, in 1-2% of cases* a susceptibility to develop Neuroblastoma can be inherited from a parent. The risk of developing the features associated with the hereditary Neuroblastoma may be passed from generation to generation in a family, but the severity of the disease can vary widely between family members. Both boys have had blood samples sent to the Netherlands to be tested for the specific gene and hope to enter a study group in USA next year.
Connor completed the same aggressive treatment protocol as Darcy. He underwent five rounds of intensive chemotherapy, major surgery, a bone marrow transplant, radiotherapy and 6 months of immunotherapy. He is also currently in remission and due for his next quarterly check up in February 2017.
*as per information from the Children’s Hospital of Philadelphia website
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