He’s done it!

We’ve done it! He’s done it!

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We got the formal results of the MRI and the tumour has shrunk a total of 50% over the course of treatment.

 Let me make that gloriously clear… The tumour has not regrown. 

This post has been a little delayed.  Thank you for your patience and unwavering support.

I would have loved to shout the news from the mountain tops the day we found out but instead we sat in our doctor’s office, in shock, sedating Bede, holding him while he screamed, perplexed and trying to figure out what was happening. Over the last 2 weeks we have been averaging about an hours broken sleep a night. Attempting to keep Bede comfortable has been an all consuming challenge and no one could get to the bottom of what was wrong.

We  finally found a nasty urine infection, a bacterial gut infection and gastro. … the perils of having a suppressed immune system.
Now he is improving. He is smiling more freely and laughing again. His chuckle fills the room.

I am now able to take a moment and bathe in his beautiful light, wrap myself in his warmth and rejoice in his triumph. The news, finally, gently settles and I delight. It hasn’t grown!

With love, positivity, hope, prayers, blind faith and determination… It hasn’t grown! He’s done it again. Multiple doctors looked at that CT. Neurologists, neuro surgeon, radiologists and oncologists. It looked bigger to everyone but it’s not. Bede has done it again.

I do not feel relief. I feel pride. A deep, soul nourishing pride. A pride that is only paralleled by my gratitude to each of you. I am sure I have said it before and it remains true-  the miracle Bede has needed and continues to need is each of you.

Make no mistake, your love, hope, positivity, prayers, vibes, thoughts have carried him through as though on the wings of angels.
I am humbled. I am humbled that you have not only taken a moment out of your day to send Bede some love but that you have held him in your thoughts and minds and collective consciousness. That you have wrapped him up in kindness and hope and protective love.

Make no mistake, the love you send Bede helps him in a very real and tangible way.

Our family has big decisions ahead of us. Ones that involve life and death, pain and joy, hurt and time. There is a balancing act ahead. I have faith that whatever is meant for Bede, he will continue to lead us and light the way.

Tonight Gus says that if everyone is confident in Bede, we might just get through. I told him the tumour has not grown and he said “well that’s a delight to hear.”  Yes beautiful boy it is!

Bede’s light is soothing. His essence is transitional and strong and gentle.
He is bruised but he is recovering. He is determined and he is joy.
He snuggles.
He will laugh as long as you are happy to laugh along side him and is finding humour and happiness in the most peculiar things.

Roy and I are feeling so blessed to have our family together under one roof again tonight.

He’s flipping done it!

I can’t think of a better note to leave you on than this video we took earlier today. This video lets bede speak for himself. Bede has decided that going to sleep is hysterically funny. He is such a happy boy.

Thank you.

Half way through and the triumph is his.

It has been an incredibly difficult few weeks, some of our worst in fact but in this moment Bede is defiant and triumphant. He shines, purposefully and hopefully.

Bede’s happy soul and his inherent light are irrepressible. He bubbles and the delight he is taking in the world is contagious and full. He is cheerful.  His coos are high and happy. He laughs freely now. A breathy chirpy chuckle. His happiness comes with a new found ease and he draws us all in. We are taken and my god we are happy.

I am working on a post to update you on the last few weeks but it is difficult. A lot has happened and it has been taxing. I don’t think it is too dramatic to say we could have lost him and yet here he is now displaying his joy and resilience in all their glory. Bede is triumphant.

I just wanted to make sure I took this moment to mark Bede being halfway through his treatment. To that aim I’m posting the slideshow I referenced in my last post.

Here is Bede, putting one foot in front of the other and quietly, diligently, purposefully, happily, joyfully kicking cancer’s ass. Here is Bede bringing light and love and wonder to all those around him.  Here is Bede facing a rare brain cancer and doing it with grace. Here is Bede, take note he won’t be here long and he is magnificent.

Thanks for stopping by and thanks for seeing our beautiful Bede.

Thank you for wrapping him up in your love.

Thank you for empowering him to be known to the world by sharing his story.

My gratitude to you all runs deep.

If you want the music make sure you turn on the sound.
Please don’t forget to follow the blog so next time we need a mini miracle we can call on your positivity to help carry him through. There should be a little grey box at the bottom of your computer screen that says ‘follow’, its that easy,
Is.

Triumph & Trauma

I have just realised that we have all been so wrapped up in the beautiful moments this last week all our photos are of us sleeping.

I have just realised that we have all been so wrapped up in the beautiful moments this last week all our photos are of us sleeping.

I try to keep this blog about who Bede is and how he is doing rather than just boring everyone with the details or even, sometimes the despair, of what is happening. Sometimes though, I think the details are important at least for the purpose of letting our families know and certainly as a testament to Bede’s strength and the pride we feel for him.

In the last 3 weeks Bede has had

  • Severe pain
  • Respiratory issues
  • Needed oxygen on and off for the whole 3 weeks
  • Heart rate issues
  • High blood pressure
  • Constant Morphine and Ketamine infusions
  • A blood infection
  • 4 kinds of IV antibiotics
  • His permanent line come out
  • The lining of his small bowel breaking down
  • Vomiting and Diarrhea
  • Tumour growth
  • 5 blood transfusions due to the chemo depleting his blood cells.
  • CTs
  • The skin around his bottom breaking down and bleeding
  • Cannulas and collapsed veins from blood tests
  • The hardcore chemo
  • Surgery to insert his new permanent line, this time an infuser port
  • MRI under general anaesthetic
  • And has been weaned off a lot of drugs

In fact the majority of these things unfurled in the first 2 weeks following the new chemo. Each day has been a new challenge and each day we have tried our best as a family to meet it. Day by day. I think rambling off that list is important because it really demonstrates just how remarkable our little Bede is. Through it all Bede remains calmly and firmly himself. I marvel that through all this trauma he has not only managed to continue smiling and shining but he has also managed to grow so much. We are incredibly proud of him.

We had an MRI on Friday which, incredibly, showed the new chemo has stabilised his cancer. Quite a feat really considering the tumour was growing so aggressively, it MAY have even shrunk it marginally.

This week we managed to stretch his IV lines all the way to the big bed and we slept together. Just like old times. Wrapping each other up in our sweet love.

This week we managed to stretch his IV lines all the way to the big bed and we slept together. Just like old times. Wrapping each other up in our sweet love.

We have had some positively wonderful times with bede. Uplifting times. Beautiful affirming days.
One day in particular was incredible, we had an infant massage session, a music therapy session and a guided play session. He was so incredibly enlivened and engaged. He has definitely re earned his nickname smiley.

Bede has grown within his own mind so much.
 He has a favourite page of a touch and feel book and reaches out to stroke the animal. He plays kissing games and smiles asking for more.

He freely gives away his joy by smiling indiscriminately. He smiles at everyone now, those jewels are no longer just for his Mumma and that makes me beam. His smiles are beautiful and luminescent, they of course shine so bright. His smiles make everyone else smile and the Bede effect is clear.

He has even managed to fulfill the secret hope I had for before the next chemo started. He is back to laughing.

I think what has brought Roy and I the most joy has been watching Bede discover, develop and explore his sense of playfulness. That purely childlike quality that is in its essence so far removed from his cancer and all that that entails brings a happy balance to his awe inspiring substance. His gentle determinedness remains resolute. In addition to that determinedness he now pauses and basks in the moment, seemingly bathing in his own light. Strengthened by happiness and curiosity.

We have now started the second round of the hard core chemo. We haven’t been home in four weeks. We are hoping to get home for a couple of days this cycle. I think it would so much good for Bede, it would reenergise Roy and I and would do the world of good for Gus.

I know its been far too long between posts by the state of all my inboxes. This has been such an incredibly intense and equally triumphant and traumatic time it has been difficult to update. Each time I tried I was overwhelmed by where to begin. I worry that I no longer have the emotional wherewithal to do justice to Bede with my words but I will continue to try so long as you all continue to pray for him and care for him and are sending him light and love and positivity.

Thank you.