Ordinarily extraordinary

post surgery bede

It’s been an ordinary day here. As per usual Bede’s little body rises to meet the challenges it faces.He had surgery at 8:30 this morning. The doctors inserted the broviac line and did the lumbar puncture. To insert the line they cut into his jugular, insert the tube and then sew his jugular back up again. He came out of that surgery a little more roughly than he seemed to after his brain surgery. His oxygen levels weren’t as great as last time and he was much more unsettled. Maybe that was because last time he had so many more drugs on board but it made me wonder if this is all starting to wear him down in small ways.

post surgery

As I type this the chemo drugs are dripping into him. Roy says it all seems too easy for something that is so serious. For me I feel incredibly uneasy. It feels like we are pumping poison into him and I wish we didn’t have to. It feels unnatural as a mum to be sitting here having to be ok with this. My hand rests on his head and I concentrate on channeling as much love into his little body as I can. We sit quietly all three of us taking comfort in the others company.


Bede is to some extent unrecognizable now. The steroids he is on have swollen his face right up. Everyone keeps saying he must be so healthy and have gained so much weight but in reality he has had a small loss. I hope the swelling will go down soon but even that can not suppress his delight and his gentle joy. His smile shines through radiantly.

After a disheartening and exhausting week we go into this chemo feeling reenergized by Bede’s determined happiness and his strength. I have come to see Bede as a bit like a large ship, not making a fuss, lighting the way, calmly and firmly moving forward through the waves and the ice, unperturbed.

In summary we’re exhausted and wish we didn’t have to be here. The surgery went well and Bede as usual is doing amazingly.

I know I’ve said it before but we’re starting on the mild chemo and we’re only giving it 6 weeks to work its magic. Please pray, send positive thoughts, meditate on it whatever your thing is please please please send some of it Bede’s way.

I truly believe all the love and positivity he has received to date have made the world of difference to our beautiful Bede. I want so badly for his sake for the good chemo to work. For his experience of the world to be as painless as possible. For the bad not to be crowding out the good. I want sweetness, peace and light for this beautiful boy that embodies all those things.

This is just such and odd moment for our family. I have a joyous post to come but I knew so many of you would want this update so thought I would quickly throw it up.

12 thoughts on “Ordinarily extraordinary

  1. Oh Bede! Oh Issy! Oh Roy! so much love and care coming directly to you from so many people, wrap Bede and yourselves with it, it is very healing.

  2. Your strength and courage give us much pride. Beautiful Bede, you are strong, you are special and you can do anything!

  3. Bede all our love, strength & prayers are for you and your family to make it through this tough time. Big hugs little man xxxx

  4. Hey Is and Roy, Chemo drugs have a split personality (and we know well the good and bad of that) Bede is getting the positive side. Tuscan soup on the stove do you want some for brekky?

  5. I wonder where the blanket came from….
    There is a surprise coming in to you Bede as soon as I wash it.
    A warm cuddly surprise…. o.O

  6. Bede, Issy, Roy and Big brother
    Sending all the positive thoughts I have to you. Fingers crossed as you embark on this journey xx

  7. Together we send our prayers of love & light surrounding little Bede & his family in this fight…with his unwavering courage..not loosing sight of Faith of all the unseeing energies that support him every moment.
    Sending joyous prayers filled with love & continued courage on his special day today..his ‘Christening’.
    Love Light & blessings this special day of Celebrating Little Bede.
    Oxo Maureen

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