GOOD NEWS AHEAD:
We’ve been busy living.
We’ve had beautiful Bede’s first easter at home but it was his second easter. We are well and truly in the year of seconds now!
We’ve been home which has been challenging and care intensive but also fortifying.
We’ve been on picnics in parks and lakes and little monastic country towns. We’ve been for bush walks and BBQs and to the farmers markets. We’ve sat in the fresh air and sunshine and we’ve even dragged Bede along to a wine tasting. We’ve had baths and cuddles and snuggles and kisses. We’ve been enjoying the day to day of family life and all during the school holidays so Gus has been around with us.
Most of all we’ve been delighting in our little boy’s spirit. He has the funniest comic timing and his laugh is irrepressible. He will be sleeping and just wake up bubbling over with laughter, watching a movie, in the middle of a conversation, while he’s lying on his play mat alone. His laughter and smiles and light fill the air.
So here’s what getting home and being home have sort of looked like….
His joy is whole and pure. He is resettling finding his feet and once again reclaiming his peace. His light shimmers.
Physically he has been temporarily diminished but he is still whole.
He babbles. He says “hi”. He reaches out for hugs and pulls us in until he’s had enough and then pushes us away. Although his illness and his treatment have delayed his development he is so purposeful now.
Most of all he smiles and laughs and glistens with wonder.
We are happy.
Bede has been readmitted once again on the verge of his bowel perforating but thanks to the team we caught it early and he has beat it back and is doing well. The experimental treatment he has been on has involved high flow oxygen which really agitates him but everytime he manages to pull the prongs out of his nose he laughs and delights in his own determination.
That is a determination that has served him well.
A little over a year ago the Bede Update was not yet a blog and was being delivered to around 60 people in the form of a text message. A little over a year ago I sent this text out:
I asked for your positive thoughts for a day and I had no idea I would still be here clothed in gratitude and the deepest humility after a year of support, love, prayers, sunshine and good vibrations or that all of that would now be coming from so many of you.
You have not given into apathy, you have lifted us up and my gosh we are thankful.
So here, almost by way of thanks, is the big MRI news.
The MRI results are in and 5 months after chemo finished the primary tumour is still shrinking significantly month to month. It is not just the necrotized cystic matter but also the solid tumour matter significantly shrinking. This is phenomenal, unexpected, incredible. Miraculous.Our doctor has never seen this before.
We were only meant to be able to achieve 20% shrinkage. We are now so far beyond that.
We are happy and proud and reassured and validated and just overwhelmingly happy. We have fought hard and he has fought with us and we are finally winning. We are holding on tight to each other and we are so happy.
Bede is defying. He is cancer conquering. He is living life on his terms. He is calmly and purposefully setting the rules.
The doctors of course still say Bede is terminal and won’t give us a timeframe but slowly, daringly, maybe naively, wild brash hope starts to creep in. Hope for time, hope for life, hope that we can continue to enjoy his company for a little longer.
It’s not an easy fight. But it is one that Bede fights with peaceful loving resistance. He is the embodiment of so much love and devotion. It’s time we all start getting used to the fact he may be sticking around for a while.
Trying to write a thank you to all of you, the members of team bede, I imagined you all standing in front of me and this is what I would say to each of you…
You have helped me carry my child, you have stilled my hands when they were shaking, you have strengthened me when I faltered and when I was too scared to be positive or scared that my positivity alone was not enough you helped carry a mother’s load. You have held Bede as I have held Bede. Your love has grazed his forehead like the gentlest kiss. When our family faced fear, darkness and despair it was your arms we felt around us.
Apparently miracles do happen, Bede’s life is a miracle and from the bottom of my heart I believe it is you who are helping deliver it. So as I type this through tears of gratitude thank you does not seem enough but thank you and Bede’s life lived so beautifully is all I have to offer.
I hope you will all continue a long this journey with us, carrying him on this wave of good intent, delivering the miracles that love and prayers and positivity have helped deliver
He may be small but he is mighty.
Last post I said I would update you on all the ups and downs of the last few months but I think its time to let all that go. We sat there with death by our side and predictably Bede stared it down. It was taxing and difficult. For Bede, and indeed all of us, it was brutal. We were in some of the worst places we have ever been. But that is done and now here we are bathing in his light and love and happiness. In this moment tired resilient happiness is our truth.