In 2011 when Conor was in kindergarten, he began vomiting every morning as soon when got up & on the way to school. I had to bring a bucket in the car for Conor as he would always vomit again in the car. I thought it was a stomach problem and I asked the GP for a referral to a gastroenterologist but he dismissed me & said it would settle down. I never considered it could be related to his brain as he was only four and an otherwise happy and healthy child.
11 weeks later we had an appointment with a paediatrician who after hearing Conor’s symptoms ordered for him to have an MRI there and then. It revealed that Conor had a large tumour in the cerebellum of his brain. I was shocked as I never thought my little boy would go through something like this.
Conor was on steroids for a week before his operation and then on the 24th of November, one month before Christmas his tumour was removed. Following the operation his tumour was diagnosed as a non aggressive, grade 2, polycystic astrocytoma. Recovery for Conor was slow, we tried to have a joyful and happy Christmas that year but it was hard to celebrate with Conor in so much pain. He needed to lay down all day and the steroids he was taking made his face bloated.
He began to regain his strength and started back at school in February, once again the funny and light hearted child he was before. We felt assured with the knowledge that there was only a 5% chance of his tumour growing back, however, to our horror a MRI scan taken three months later revealed that his tumour was already growing. The specialists decided that they would continue checking with three monthly scans until it needed to be operated on again.
In February 2014 Conor had to under go a 9 hour operation to remove his second tumour, trying to ensure his tumour would not grow again the surgeon went in deep, in the process his 7th and 9th facial nerve were removed causing Conor to lose most of the vision in his right eye and the the ability to blink, he also developed facial palsy as a result of this invasive surgery. Conor was in ICU for 9 days, during this time the results from the biopsy taken of Conor’s tumour revealed that he in fact had stage three, aggressive anapaestic glioma. To our shock and dismay he would need 12 months of chemo therapy and 42 sessions of radiation treatment for every day for 6 weeks.
Conor came home for one night to be with his family, the next day he was complaining he had severed headache and said he was worried he was going to die. I laid him down and after a 20 minute rest he woke up in agony, I was unable to lift him as he was in so much pain. I called an ambulance who took him back to PMH where he underwent surgery once again as he had a blood clot and he was haemorrhaging in the brain where the tumour had been. Due to this horrifying complication he was back in ICU. A few days later he was once again in extreme pain as he experienced brain fluid build up. He once again was operated on, this complication meant that in the space of three weeks he had three brain operation. They placed a drain in the side of his head to relieve the pressure in his head. All up Conor spent two months, full time in hospital.
This period of time was very stressful, Conor needed the use of a wheelchair due to his lack of balance and energy. He rarely went to school and missed out on three terms of year 2 he wished he could play with his friends. For nearly 11 months after his multiple surgeries Conor lost the function to swallow. He was fed a liquid diet through a nasal gastric tube. It seemed as though his suffering and complications were never-ending.
It is now 3 years since Conors second brain tumour was removed although he is back at school and relatively healthy he suffers ongoing nerve pain on the right side of his face. He has needed to have a weight put in his right eyelid to keep it closed as he kept getting a hole in his cornea as he can’t blink. He takes three different kinds of nerve pain medication to control his discomfort. Due to the trauma and treatment his brain received Conor also has short term memory loss and struggles to retain information at school, he often forgets people’s names. We pray every day that his brain tumour will never return. Conor’s battle with brain cancer has had a major impact on every one who loves him, his teenage brother was unable to seek support and understand his emotions and ended up becoming dependent on recreational/party drugs. At the time I thought I was coping but looking back I can see I was a complete mess from no sleep, stress and heartache for my son.
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