On 2 May 2018, our 9 year old son Liam started suffering from severe headaches on and off for two weeks, until the day it was so bad he didn't want to go to school - for those who know Liam, that is a huge thing! After a check-up with the doctor, he was sent for a precautionary MRI scan of the brain - just to make sure there was nothing sinister going on inside him. Well, we had not prepared for the diagnosis of a 2 cm pineal tumour with hydrocephalus and the urge to see a neurosurgeon urgently. I don't think it is possible to prepare for that message as a parent.
The first hoop to jump through was to urgently release the pressure on Liam's brain caused by the fluid retention due to the tumour acting as a plug for the cerebrospinal fluid. An endoscopic third ventriculostomy and biopsy of the tumour was scheduled for 9 am Saturday morning 19 May, but after a CT scan the surgery was moved forward, initially to 4 am and eventually 2:30 am, exactly 8 hours to the minute after Liam's last meal - what no one told us until after the operation is that it was such a critical buildup of fluid that it was a matter of hours before Liam would seize up, fall into coma and/or die!
A prognosis of 2-3 days in the paediatric ICU followed by another 2-3 days in the general ward to recover from the brain surgery had us worried, but in the end, Liam recovered so well from the surgery that he ended up spending a mere 7 hours in the ICU and was released on home leave the very next morning. A week of waiting for the results of the biopsy was ahead of us. A week of informing family and friends of the situation and explaining that no, even though he had brain surgery, the tumour is still very much there, and will still need to be dealt with.
Four days early, the hospital called us to come back in as the biopsy results were in. We are dealing with an aggressive, malignant germ cell tumour, which has been present for an estimated 4-5 weeks, and equally aggressive treatment must start as quickly as possible. The treatment plan is four rounds of four days of chemotherapy with two weeks rest in between, followed by 4-6 weeks of 5 days a week radiotherapy, with progress evaluations in between each round. That journey starts today.
The prognosis is good at a 90% recovery rate with a 50% full cure rate, but it will be 6 months of intensive treatment and care for Liam. To facilitate this, as well as to allow us to look after Liam's younger brother Nathan, we have to cut back on work, so one of us can always be with Liam when he is in hospital, and the other spend as much quality time as possible with Nathan.
As much as we are a private family and hate asking for help, even with insurance covering the majority of medical costs, without two full incomes, we will be struggling to keep up, and any way you can support will be a huge help for us. All received donations, that we end up not using on Liam's treatment, transport to and from hospital, hotel rooms to be close to the hospital, and simply keeping our family afloat during this time, will be donated to a children's brain cancer foundation of Liam's choice.
Thank you for taking the time to read our story so far. Please send us all your positive vibes, thoughts and prayers over the next 6 months.