Its been a month or so since I last updated, Ben has had his follow up appointment with the oncologist & is now medication free. No sleeping tablets or dex. The doc advised no growth, which is awesome news but Ben has gone the complete opposite. About a week before the doctor appointment he started to sleep more, and be a bit dizzy. We mentioned this to the oncologist but he didn't seem to worry- just mentioned to me to watch for him acting strange, and drunk like. If that is to occur, he would have to have a shunt put in his brain. So we get to the third week of December,and I am really starting to notice this bloody brain tumor. Christmas was lovely and quiet but he slept most of the day. Which is now a common thing in our house. He is awake for about 2 hours of the day & night only. He so wonderfully, came along to carols the night before christmas eve, I could tell it was so tiring- but he does it with no complaints. Once the public holidays are over, we will head to the GP- get a blood work up done. Hopefully its just a lack of iron or something. If nothing to out of the ordinary we will have to go back to the oncologist. I suspect he will suggest Ben goes back on the dex. And I know Ben will refuse. Maybe its time to start consulting Charlie Teo??? My birthday is the beginning of Feb, our second daughter's first birthday is late Feb and his 1st year anniversary of this shit of a thing is the 1st of March. I hope, and I pray that this will be a happy time for us. We have had a lovely time, such awesome memories, I still pray for a miracle. ... View more

Well, 6 weeks of radiation going every day 5 days a week is tough on everyone, but more specifically pretty terrible for the person going through it directly. My dearest husband conquered radiation with such style and dignity. Not once complaining, always complimenting me and always putting me before his own needs. We had a rocky start to the treatment, his rage got severe, to the point where he decided he no longer wanted to live with us anymore. He felt that he was a burden and a risk to us. It took me three days to talk him down, constantly reminding him that this is our journey to, and we are here in the good & the bad- together- united. His moods lighten, he was his old self, much like his 21 year old self. By the end of the 6 weeks, I thought, YES- maybe this is our miracle, maybe this will be our cure. He wasn't suffering as much, and he was in great happy spirits. 3 weeks has passed since the end of treatment, and the Dex has been completely weaned off. And we are back to terrible town, splitting headaches, mood swings, icy cold stares. He has his follow up MRI on Thursday, and appointment with the oncologist to discuss on the 9th Dec. I fear, the news will not be nice, and we are in for a rough & emotional christmas. And he fears that his only quality of life left is to be on Dex for the rest of his living life. I am fought with trying to "save" him, I search day in day out for the "answer or cure" I know he will eventually die, and I know and have accepted that it will be much sooner than we would like, but I live in hope that he will be around a little longer for the girls, especially our youngest- so she can know her dad- and know how much she is like him. At the moment, I am going through the huge procedure of getting his insurance claim lodged through his super, when all I want is for us to be able to relax together. Anyway, only time will tell, back to trying not to think about it until the 09th december. Until the next appointment, Ciao ... View more

Well, we have now completed day 2 of radiation. Ben was great yesterday, very tired today, & a bit naseated. Reality hit, when I had to undress him & put him to bed tonight. Is this what my life is going to be? God, I pray for a miracle every day, please give me the miracle my family needs. My eldest daughter who is 3 is struggling, she was very emotional today. She knows dad is sick, and up till now she has played it off with offers of bandaids & cold glasses of water. But today, I think it has hit home as much as it can to a 3 year old. I'm strong, and I cope but some days, when I stop, and finally get 5 minutes on my own I feel scared. I feel scared of the unknown, I feel scared that I am not going to be enough for my girls. And I feel sad that there is a high chance they won't know their dad, or at least their real dad before this tumour stole him. I am extremely blessed, his brother isn't working at the moment & is driving him to and from radiation. This in itself is a massive help, nothing like driving an hour and waiting around with 2 young children at dinner time. I sit on my own tonight for the first time in nearly 7 months, lets hope once the radiation is completed in 6 weeks time, I'll have my soul mate next to me back to normal and hopefully kicking this tumour's butt!!! ... View more