This journey begins around Wednesday, August 30, 2006. Olivia had been pretty sick over the past weekend. She had developed a cough on the Friday and by Saturday and Sunday, she had a fever and was vomiting. She picked up a little bit by Monday morning but later that day she began to deteriorate. James headed off for a business trip to the USA early on the Tuesday morning. In the meantime, I kept a close eye on Olivia as she continued to feel worse, continuing fever, cough, lethargy and loss of appetite. I took her to the GP on Tuesday who seemed to think she had a virus but ordered a chest x-ray just to be sure it was not pneumonia. The chest x-ray was clear. By Wednesday, she could barely move and was breathing rapidly. I took her to another GP who told me to take her straight to hospital. She went to Emergency, where they took an x-ray which confirmed she had a pretty severe case of pneumonia. I learnt that pneumonia can set in very quickly within a 12 hour period. The doctors began immediate treatment.
While in Emergency, I asked the doctors about the unusual bruising around her eyes which had been there for about a month. I had previously asked a couple of different GP’s about this but they didn’t appear concerned and simply told me that bruising around the eyes can take some time to subside. We were further perplexed by the fact that neither of us recalled Olivia bumping her head on anything. One GP ordered a blood test which showed her haemoglobin (red blood cells) was low which can cause anemia so the doctors were going to monitor this by taking further blood tests later on
The Diagnosis
The doctors at the hospital agreed with me that the bruising was unusual and that it wasn’t normal for them to take so long to heal. They immediately ordered a CT scan of her head which didn’t show any problems. They decided to repeat the scan using a contrasting dye. This would help to show any abnormalities. The pediatrician told me that the scan had revealed some abnormalities in the bones in her head but couldn’t, at that stage, tell me what it was. Of course, I panicked and was quick to ring James in Las Vegas to tell him what was going on. Later on, the pediatrician returned to tell me that what the scan showed, looked to him like something called Neuroblastoma. I’d never heard of Neuroblastoma, but as soon as he told me, I knew it was cancer. Canberra Hospital does not treat these sorts of illnesses and he told me that we needed to go to Sydney Children’s Hospital immediately for further testing.
I was beside myself with fear and anxiety. Even though a diagnosis had not been confirmed and I didn’t know anything about Neuroblastoma, I feared the worst and felt my world start to crumble down around me.
I was told that Olivia and I would be flown to Sydney early the next morning via Air Ambulance and I had a short time to go home and pack a few things for the girls and I. As it turns out, we took that flight at about 3.30am. On arriving at Sydney Children’s Hospital just before 5am, we waited in Emergency for quite some time. Olivia was so sick with pneumonia and in the meantime, I could feel my heart breaking. Time becomes a bit blur for me now. All I know is that Olivia had a number of blood tests and was whisked away for other tests, x-rays and a full body CT scan.
Earlier that morning, one member of the oncology team spoke with me about the results of the head scan. She confirmed that there were three lesions in the bones in her head which, as it turns out, were causing the bruising around her eyes. In fact, one eye socket has been moved down as a result of the one of the tumours. The doctor told me that Olivia would have to endure many more tests to confirm the diagnosis of Neuroblastoma. She also told me that Neuroblastoma is curable, but I later learned that this largely depends upon the spread of the disease.
By this stage, I was a complete and utter wreck. James was in Las Vegas attempting to make his way back home and Mum and Dad were traveling up to Sydney with my 7 month old daughter, Sarah. I felt very scared and alone. Some of the doctors and nurses, as well as the social worker were trying to comfort me. How do you comfort a mother who is being told her two and a half year old daughter has a serious, life-threatening disease.
Throughout the day, Dr B, who, as it turns out, is Olivia’s oncologist, gave me updates on results and some information regarding Neuroblastoma. Later in the day, she confirmed the full body CT scan revealed a mass on her spine and that it could compromise her spinal cord. At that moment, I was holding Sarah, and I felt pins and needles travel from my fingertips and up the length of my arms. I began shaking uncontrollably. I felt as though I would pass out. Someone must have taken Sarah from me. My head was spinning, the voices in the room were a blur.
From now on, the doctors and nurses had to do regular neurological tests on Olivia to ensure her spinal cord was not being compressed by the tumour.
In the following days, James returned to Sydney and Olivia had to endure more tests, including a bone marrow aspirate, a bone scan, an MIBG scan (which is like another bone scan where radiation injected into the body attaches itself to Neuroblastoma cells) and an MRI, all of which required a general anaesthetic or sedation. She also had a barrage of blood tests. More bad results followed. We were told that Neuroblastoma cells were found in her bone marrow and other abnormalities were found in the other scans. All of this pretty much confirmed the diagnosis Stage 4 Neuroblastoma. We were told that as this is a very aggressive form of cancer and that she will she will be treated with a highly intensive form of chemotherapy, require radiation therapy, a bone marrow transplant and possibly surgery. Due to the closeness of her primary tumour to her spinal cord, it was deemed too risky to attempt to initially remove it through surgery. Olivia has 3 main tumours in her head and numerous smaller tumours currently too widespread to be removed through surgery.
The chemotherapy protocol and side effects were explained to us. Once again, I was overcome with emotion at the prospect of what Olivia will have to endure over the next 8 to 9 months and further down the track. We were told that she had a 30 to 40 percent chance of surviving this horrific disease.
We have since learnt that Neuroblastoma is one of the more common forms of cancer in children under the age of five. Neuroblastoma cells originate from a part of the nervous system and tumours often arise somewhere in the abdomen, usually in the adrenal glands, above each kidney. However, Olivia’s primary tumour is located in her spinal column. This disease is far more curable if presented in the first year of life rather than later on. In fact, we have been told by a few doctors and nurses that after the age of one, a simple urine test can usually identify if Neuroblastoma cells are present in a child’s body. Neuroblastoma raises the level of a certain chemical found in the child’s urine. It’s disappointing this test was not available to Olivia early on as it may have enabled us to detect the disease at an earlier stage. Usually, by the time a lump is discovered, the cancer has already metastasized to other parts of the body. The more widespread the disease, the more difficult it is to cure. In a way, we are grateful Olivia presented with black eyes or else we may never have known she had this illness. She was always so happy and full of energy and hardly ever sick (besides the pneumonia she had when diagnosed).