As Bede got sicker and we had more and more admissions and more and more people requested to be kept up to date with what was going on with Bede it has grown and grown.
Last week our then 16 week old son was finally diagnosed with a rare form of brain cancer. It is on his optic nerve, his pituitary gland and is pushing against the stem. The cancer has spread throughout his brain stem and spine. The cancer in his brain is so big it can not be removed and the cancer that has spread to his spine and brain stem is so fine it can not be removed. Chemo is our only hope and Bede’s kind of tumour is apparently notoriously tricky to treat with chemo.
We don’t know if this is fightable or not and if it is to what extent.
My greatest fear as a mother, greater than the fear of losing him, is that Bede goes unknown to the world. That the potential lack of length of his life means he just fades away into nothingness.
We are humbled by just how many people want to know what’s going on so they can offer us support and offer Bede their love and prayers. Not just our family and friends but other families from the hospital, complete strangers, hospital staff, people we have never met or even heard of until someone tells us they want to know how Bede is.
It’s a daunting task informing everyone, while trying to process this experience ourselves.We do so because we truly believe that all the love, positivity and prayers everyone has been sending Bede’s way have made a true and tangible difference to his journey so far.
The love he is given will shape his experience of this world and we hope counter some of the harshness he has to face. So for all your love and care we are deeply grateful.