The three months following Raj’s 1st op were quite surreal. It was as if nothing had happened. Raj was so so normal. Running around as usual. No lasting effects of surgery at all. Jay rang us for results of the tumour analysis and said the pathology was difficult. Raj’s tumour looked like 2 different types. One was a glioblastoma. The most aggressive type of brain tumour there is. The other was an ependymoma which was a grade 3, with slightly better outomes. Regardless we knew Raj had a cancerous and fast growing tumour. The docs asked us to go back into hospital for a MRI in August 2012 (2 months after surgery). The MRI results came back quick. The tumour was growing really fast.
Jay sat us down and gave us the options. Option 1: we go in for surgery and Jay would be agressive. We remove all of the tumour and some healthy brain cells around for a clean resection. The very likely risks were Raj would be left paralysed on the left hand side of his body. That could include not being able to walk again. Use his hand or arm and maybe not even be able to swallow again. The further downside to this was the tumour could return and he could die within 6 months anyway. Basically we could ruin his physical freedom for him to die regardless.
Option 2: We do nothing. Raj would be gone within 3months but he would die running around as he was. A happy boy with full use of his body.
I knew what I wanted from that first conversation. All the family did not see the same way at this time though. I wanted to fight, I wasnt going to have it any other way. Hope is everything. There could have been a 1% chance of survival I would have taken it. Im optimistic, and I had faith in God. It was also the year of the olympics in the UK. The paralympics were on. It was so clear even with a disability Raj could live a happy life. It would be different but if people with disabilities could do all the amazing things these paraolympians were doing, how we could we say that that was a lesser life to live?
We started talking about how we would handle a disability. Would I quit work or would grandparents help out? We chose to take Raj away to Eurodisney. We thought if he wont be able to run around we wanted to make and capture some memories.
In October 2012 we headed into JR (John Radcliffe) for the big op. Prior to this I received a call from Sasha the camera lady who had been at the hospital filming for the BBC. She worked for Landmark films. She said Suki, I don’t mean to pressure you but it would be really great if we could film you guys. During the 3 months since Raj’s diagnosis I had done my research. I was shocked to learn brain tumours killed more under 40s than any other cancer. Research was also massively underfunded. They literally had made next to no progress since the 70s! I found myself wondering how I could help this cause. I thought filming would be a good start. I could help by drawing awareness to the fact we didnt have many options. Sasha became friends with us at hospital and with Raj. It was a huge comfort as I knew she would be in theatre with Raj. Raj knew her and he enjoyed being around her so it was good to know he would have someone he knew in the room (even though I knew he would be asleep) . Below is a link to the documentary. Its hard viewing and there are scenes from Raj’s op so please watch with caution.
There was one scenario though that I was scared of. Jay had prepped us for it. He would send Raj’s tumour off mid op for analysis. If it was the glioblastoma he would close up and not resect the whole lot. The reason for this was he expected Rajs tumour to be back within months and it would kill him regardless. He did not want to paralyse him if this was the case. If it showed the less aggressive ependymoma, he would go whole hog. Well the rest is captured by the lovely Sasha. Meet Jay, the most amazing surgeon! 😊