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.
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.
The Bede Update 
You do what you have to do for your little man,we love your posts,but trust me,posts or not we’re all still here ,sending love and light to you all.especially to Bede.
Izzy, the photo of you and Bede cuddling while asleep bought tears to my eyes.. There is nothing more beautiful than sleeping nose to nose with your baby and feeling their gentle breath on your face 🙂 For Bede to have endured so much, not just during the past few weeks but also in his young life; and still be able to love and laugh, play and smile is testament to what an amazing little boy he is and what wonderful parents you must be. Sending you, baby Bede and your family lots of love and positive energy xoxo
Always praying for big strong Bede xx keep it up
Please post only when you can. We are humbled by your dignity and Bede’s obvious joy. It is truly an honour to be included.
It’s wonderful to hear dispite all the bad stuff he deals with Bede is exploring himself, finding what he likes and what makes him laugh. He is such a strong little guy
Oh your words certainly do him justice. What a marvellous, incredible boy you have. You’re all in my thoughts xx
Your words are like music Is, they create a vision of Bede, his heart, soul and being. He is absolutely awe inspiring and the fact the tumour growth has stabilised is incredible. We know Bede will defy any statistic or preconception about this cancer, he is navigating through this with incomparable strength. “The Bede effect” is awesome 🙂 He is a force to be reckoned with. He is in our thoughts and prayers everyday. We wish you all the luck in the world that you will be able to spend some time with him at home. Mountains of love xxxxxxx
Yes Isabella you should be very proud of him because he is the most amazing little boy that I ever met .love love and so much love for him.may god bless you Bede.xx
Oh bede what an amazing little boy you are, your strength is just amazing as is that of your family!
The courage that you are all showing during this difficult time is truly inspiring. Our thoughts are with you all always x
stay strong beautiful boy!
Right here right now just as you are, we love you so much Bede, Issy and Roy. Bede bop just keep bop bop bopping along.
So much love for smiley bede and his beautiful family! Always thinking of you!! Xxx
Your words are so inspiring. Thank you for finding the energy to speak about little Bede and his journey here on this Earth. He gives out so much positive energy and so many people are touched by the love your family all share. I am sending so much strength and goodwill to you all and just keep the faith. Bede will never give up and neither should any of us.
Good luck guys you’re always in my thoughts wishes and prayers thank you for sharing this with us what a special little guy all my thoughts strength and love are with you all always xxxx love Terri Pape
Hi, we haven’t met but our children go to the same school. Thinking of you and how brave you are on this journey. You are in my thoughts and prayers.
Thinking and praying Everyday for your gorgeous little man and your family.May god continue to show his love to your family, and lay his healing hand on Bede. Keep fighting little Bede I’m backing you all the way. Xxxxx
We are always thinking of you guys and enjoy seeing the great up dates from you Is….we take our hat’s off to you,, Roy,Gus and the family for all that you are doing……Bede is a very special boy and has been ‘very strong though all of this ..Go team Bede xoxox
Such good news to hear that Bede is growing and exploring and even laughing again. My constant prayers are the only support I can give, so I do daily. May God’s grace strengthen you all as the fight continues!