2013 started well, we had been married for just over a year, we had gone on a month trip to the USA, come back home and fell pregnant with our first child.
Then on the 26 October 2013, after almost a year of failed on/off treatment for migraines, Michael had a CT scan and we got a call from the radiology place not long after informing us to come back and Michael to not drive or come alone. It was a very quiet drive as we just held hands and drove. We were told there, that Michael had a tumour the size of a fist and that we should go straight to emergency. From there he was transferred to the private hospital and had surgery 2 days later. His recovery was quite good. The pathology results were even better. Although it was such a large tumour, it came back as all low grade and seeing they were able to remove it all there was no further treatment necessary, just quarterly scans. Michael was home within a week and returned to driving and work 3 months later.
The next 16 months were rather non eventful. Our first daughter was born 2 months after his surgery and all his scans (though stressful at the time) continued to come back clear. He also was having no symptoms.
On the 21 February 2015, not long after his latest scan had gotten the all clear, Michael was driving us to a family party when he had a seizure at the wheel and we crashed. This prompted further scans which revealed that 3 small growths had returned and that he would need to start oral chemo treatment. While adjusting to the medication, Michael got very tired but he continued to work and be there for his family. The news was always positive from our oncologist explaining that it was working.
In February 2016, we were pretty much told he was in remission, the tumours weren’t growing but it would be likely he could be on this medication for years. With that in mind we decided to start IVF as this would be the only way we could have another child. About a month after starting the process, we were informed that the chemo he was on was not working as planned anymore and he was changed to a combo of oral and intravenous chemo. The side effects were still minimal on him for the most part, and being who he was, he struggled through it and continued to work full time, play sport etc.
By the October 2016 and after a couple of failed attempts, we fell pregnant. Michael was able to work a full time job as a PE high school teacher and sport coordinator, play local sport and continue with life as normal during his treatment.
Over the Christmas/New Year of 2016-17 Michael began to feel worse. The combo of medication and the cancer was taking a toll on his body. By March he was really struggling, not that most would know or could tell and we were informed that one tumour was still growing and that he would need surgery again. But it would be as simple as last time, all 3 tumours would be fully removed and things should be good. I was 7 months pregnant at the time so the surgery was scheduled for after the baby was born. Our second beautiful daughter was born at home unplanned in May, delivered by her dad. Scary at the time but now so special.
2 months later Michael went in for his second surgery. But the news was not good. Once inside, the Dr realised that there was more cancer than first thought. He removed all he could but that in conjunction with pathology coming back at Grade 4, Michael would need immediate chemo and radiation once he had recovered from the surgery. Michael's recovery was also slowed, with some complications, he was in hospital for 2 weeks post surgery. He was then home for just short of 2 weeks but not being able to keep much down and tired a lot, he ended up back in hospital. From here things took a turn, he had an infection from the surgery and other complications.
Over the next 3 months, he lost 30kg, couldn’t really eat or keep things down, he was in and out of ICU, his memory from the radiation was really bad and he lost a lot of who he was. His cancer had also spread into his CFS and thus probably in his spine so he was having radiation from his lower back all the way up to his head. This was taking even more of a toll on his body. He was given 11 to 18 months to live.
By December, we ended up having to make the hard decision to stop treatment as it was having a more negative effect on his body then good. But the fighter he was, he was able to move onto a rehab place as his body, it seemed began to recover a little. During this time we were able to bring him home for a day visit for our eldest daughter’s birthday, for Christmas Day and his dad’s birthday. Some very special memories. The rehab place was amazing.
He started to go backwards again, becoming a lot weaker and experiencing more pain and just after the New Year he was transferred back into hospital and we had to make the hard decision to send him to palliative care, as latest scans revealed the cancer had just infested his body.
On the 17 January 2018, Michael passed away surrounded by family. He was only 38. His Glioblastoma with CSF dissemination resulted in a rare form called leptomeningeal metastasis. It was less than 5 years from diagnosis to when we lost our beloved Michael.
Michael worked at a wonderful school, Clancy Catholic College at West Hoxton who have been a huge source of support throughout his treatment. They have supported my girls and me in so many ways and have also got on board with the Mark Hughes Foundation selling beanies each year. They have raised a huge amount in honour of Michael and I am so thankful.
Michael was a big NRL lover, Parramatta being his team. He was a supporter of the Mark Hughes Foundation and was proud the NRL joined in helping raise money and awareness for the cause.
Written by Penny Bell (Michael's wife)
The last family photo of Michael, Penny & their 2 beautiful daughters