TOWARDS the end of 2013 Xavier started vomiting every now and then and as time went on it became a few times a week, so the doctor started with some tests and by the time Christmas came it was practically every day or every second day.
By the time he had his last lot of tests on January 10 a doctor at Latrobe Regional Hospital decided he would like to get him into Monash as soon as possible for an MRI.
On January 13 his parents, Bec and Mick, got the call from Monash saying they could get him in on the very next day.
After the scan it was discovered that Xavier had a medulloblastoma which is a cancerous brain tumor that was causing pressure in his brain and would need it to be removed as it was taking up all the space in his brain cavity stopping brain fluid from getting to the rest of his body and the vomiting was the only way of releasing the pressure.
He was admitted straight away and had surgery the next day to release some pressure off his brain and then on January 16 he had major brain surgery that went for six-and-a-half hours to remove the tumor.
They couldn't quite get it all, a small sliver was left behind. But after the biopsy came back it was discovered it was malignant (cancerous) so further treatment is needed.
Since Xavier’s operation he has developed cerebellar mutism which means he can not speak, swallow to be able to eat or drink, he can’t move freely, can’t go to the toilet himself and has a wheelchair to take him for walks.
As a result of the cerebellar mutism, Xavier now undergoes speech therapy, physiotherapy and occupational therapy to help regain his movement and speech.
On February 20 Xavier started a six-week stint of radiation at Peter Mac in Melbourne with chemotherapy to follow at Monash Children's Cancer Centre for approximately a year is the thoughts at the moment as they are still waiting on test results from Canada to see which is the best path to take for treatment.
Xavier is one of three children in the Tilley family.
He has a sister Jada who is 10 and a younger sister Peyton who is eight months.
With Xavier not walking or talking yet, Bec and Mick both need to be with him all the time as he gets transported between Monash and Peter Mac and as Peyton is still dependent on Bec she stays with them also, which means Jada needs to go between family and friends in Rosedale to school and back and forth to Monash Children's to be with her family.
The Tilleys went to Monash on January 14 for a MRI and spent six weeks straight at Xavier’s bedside.
Bec or Mick has begun to travel home once a week to pick up Jada and bring her back to Melbourne to be with her family as one of them still needs to stay by Xavier’s bedside.
Mick has not been able to work which has made times tough as Xavier is totally dependent on his parents.
They have a very long road ahead before they are even able to think about bringing their little man home.
On February 13 the results from Xavier's lumber puncture came back all clear, which was the best news the Tilley's could have hoped for as this places him in standard risk instead of high risk.
They are still waiting on results to come back from Canada as to what stage the cancer is at.
The Tilleys are staying at the Ronald McDonald House, though Mick stays with Xavier each night in his hospital room, as Bec needs to stay with Peyton at the house as she is breastfed. Ronald McDonald House has been amazing and the family will continue to stay there for the next two to three months depending on Xavier and his treatment.