We did not really take much notice when our son, Tom, complained in late July 2002 that his younger brother was keeping him awake with his snoring. Nor did we worry when a couple of weeks later James’s nose was clearly blocked. We just waited for what we thought were symptoms of a cold to go away. They didn’t! We tried sinus medication from the pharmacist then a visit to the doctor for a nasal spray. Neither achieved anything and by the start of August James’s speech was becoming a little difficult to understand. Another trip to the doctor and a course of antibiotics did nothing and by the middle of August James was starting to complain of headaches. He was referred to an ENT specialist at the Royal Children’s Hospital and, on August 21, after a very quick examination, I was told that the blockage was a tumour. How can I convey the shock that I felt at that diagnosis? I cannot remember what I said to my husband when I rang him – the whole situation was incomprehensible. Our James was a fit and healthy child who had barely had a day’s illness. How could he have cancer? He had just celebrated his ninth birthday.
Our transfer to the oncology unit was immediate. We spent the next two days having tests to determine the type and extent of his cancer and hence the treatment he would need. This was a strange time – we felt like we were in a fog and couldn’t believe that this was happening to our family. Days filled with blood tests, x-rays, a CAT scan, bone scan, MRI, bone marrow aspirate, lumbar puncture and biopsy of the tumour. We were lucky – James’s cancer had not spread which meant his chances of survival were much greater. His tumour was located in the muscle behind his nose. We did not talk about cancer with him at this stage. We simply explained that a tumour was a very serious thing and that his treatment would be hard. The standard treatment for James’s type of cancer, rhabdomyosarcoma, is chemotherapy, surgery and radiation. However, due to the location of James’s tumour, surgical removal was not possible. He began his first chemotherapy treatment immediately and this proved to be very gruelling. Three days of continuous vomiting with the standard anti-nausea medications seeming to have no effect. After three days we could go home but five days later we were back, with fever, and no white blood cells to fight infection. His hair began to fall out and he began to understand that his illness was more serious than he had realised. Very late one night at around this time he talked about the fact that he knew that he was very sick but, he confided, he was very glad it was not really bad – like cancer. This was clearly the moment to give him more detail.
Our normal family routine changed to accommodate the three day admissions for chemotherapy followed a week later by admission for eight to ten days until fevers abated and blood counts recovered. Blood transfusions helped when counts were really low. Weight loss was also a big issue. James was unable to eat for about five months so a tube was inserted into his stomach via the abdominal wall and each night while he was sleeping ‘Resource Plus’ was pumped in. One positive note, in these early days was the addition of Lizzie, our new puppy, to the family. Great therapy for all of us. After nine weeks of chemo James began five weeks of daily radiation therapy at Peter MacCallum Hospital. This, we knew, would lead to long term side effects including hormone deficiencies due to irradiation of the pituitary gland. James will develop a range of hormonal problems, the first of which is growth hormone deficiency. This is treated with daily injections of growth hormone. James administers these himself and understands that it is one of the consequences of being a cancer survivor. Although there were occasional moments of resentment and anger during treatment, on the whole James accepted all the painful procedures with little complaint. Although it was often difficult, he tried to attend school whenever possible and maintain his friendships
We are incredibly fortunate. Today there are no visible signs of James’s illness and although he continues to be monitored for relapse he is now two years off treatment and doing very well. We know that we are the beneficiaries of the work done by the researchers and those families who, in the past, were willing to be part of clinical trials. Research and trials need to continue because, children with rhabdomyosarcoma continue to die. Our family and friends were changed by this experience and so we now do what we can towards improving treatment outcomes for those diagnosed in the future. Supporting CIKA is a great way to contribute as all funds go directly to research. We hope that many others will give their support too.