It’s clear! It’s clear!

A quick message to let you in on some wonderful news.

Preliminary reports say the brain fluid test has come back clear and Bede has kicked meningitis’ ass. The first look at the fluid under the Microscope shows no bacteria. They will still try and grow some but considering it didn’t grow in the beginning it would be highly unlikely for that to happen now. It looks like we’re in the clear.

To say we are elated is an understatement. G is so proud of his brother as are we. We are absolutely awash with relief. This was one of our biggest challenges yet and Bede has faced it down as usual. We love him so much and are so very very proud of him. We’re excited and happy and thankful. Thank you for your love and prayers and support.

We managed to escape for the weekend down to the farm and it was lovely. It was wonderful to see the boys hang out together like brothers. G insisted on sitting right next to Bede for the drive and Bede spent the weekend reaching out to G. It has been amazing watching him actively enjoy his brother’s company.

Bede was so relaxed and would spend hours flaked out in front of the fire but was also having a lot of awake and engaged time, a lot. He spent much time in the sunshine with the breeze on his face at local wineries and in the garden.  He was blissed out in his first spa.

I think the greatest joy was just enjoying a family dynamic.

We are in awe of our little man and the infectious strength and happiness that wells from deep within him.

I would love to update you more comprehensively on how Bede’s little soul is weathering (robustly, happily, positively, calmly, collectedly) but I am exhausted and chemo starts tomorrow. For now I am going to crawl into bed with Bede and drink in every moment. Here are a few photos of the hundreds we took and just the first I have come across at this late hour.

I hope this post delivers Bede’s supporters a little of his joy and sunshine.

I remain humbled by your love and prayers and truly believe they are carrying Bede through these challenges.

Tonight my heart, naively, dares hope for a miracle.

flaked out by the fire

flaked out by the fire

still flaked out by the fire

still flaked out by the fire

brothers at bunker bay

brothers at bunker bay

worlds best brothers

cider in the sun and teething all over again!

cider in the sun and teething all over again!

“hmmm not too sure about this”

Good night cuddles by the fire

Good night cuddles by the fire

 

Is  xx

joie de vivre

There is joy here! There is growth and exploration and happiness and joy. There is normality and comfort and love and warmth. There is courage and blossoming confidence and just thankfulness and delight taken in being together and watching Bede grow. There is so much joy here.

Constant teething

Constant teething

Bede has been busy mastering lots of new skills.

He has been babbling more.

First he regained neck control, which was amazing. He lost it when the disease doubled and he got so sick. Now he is nearly sitting up all on his own.

If I let him hold onto my little finger just as a point of balance (he usually chews it) he will sit up for 5 minutes or so. If I sit him on my lap with absolutely no support he will sit upright for 20 seconds or so. I just can’t believe how far he has come. He seems to be only a couple of months behind some healthy babies which is incredible! We have graduated up to the next kind of chair and soon enough will be on to the bumbo which is a regular baby seat.

Bede's first unassisted sit up but no one but me to take a photo

Bede’s first unassisted sit up but no one but me to take a photo

Bede can play! wooooohooooooo!

Bede can play! wooooohooooooo!

He has been teething and while eventually, the novelty wore off I think at least in the beginning he quite enjoyed it. Finally here is an itch he can scratch, a pain he can self soothe, something he has some input over. He has had his fingers in his mouth rubbing his gums constantly and yesterday, finally, it broke through.

He’s eating ‘solids’!!! Just rice cereal to start with but this week we introduce his first flavour. I haven’t completely decided what it will be yet but I’m thinking sweet potato. He’s doing so well at it.  Opening his mouth, chewing, swallowing, and coordinating himself. Some people thought he may never eat solids so this really is awesome. I’ve been super unorgnaised with it to. I think if I’d been more onto it he’d be even further along so I’m going to get on top of it this week.

He is smiling again! For the first time since the meningitis took hold! He gave his daddy a massive smile for father’s day. The perfect gift.

long before his diagnosis and long after Bede's nickname was smiley. We love seeing him happy but he won't take his fingers out of his mouth!

long before his diagnosis and long after Bede’s nickname was smiley. We love seeing him happy but he won’t take his fingers out of his mouth!

He is so alert and engaged all the time. He’s taking everything in and participating and my thankfulness and joy run deep.

We went toy shopping for Bede the other day and got him a wonderful stash of toys that his brother is delighting in playing with with him. We bought 3 rain makers because they are his favourite; he goes still listening to them.

He tried out his newest therapy tool today which is especially designed for kids who may be vision impaired. It’s a box that has all bits and pieces dangling around him. It’s hard to explain but the idea basically is that it allows him to explore texture and feel and sound without having to move very far and he gets a lot of feed back for not too much effort. It also amplifies the sound of the rainmaker so he fell asleep. (He’s completely undressed because we kept trying to wake him up and he would only stay awake if he was cool.)

bede blog 6th sensory room

So despite the cancer, despite the meningitis he is growing. I love that. I love what an amazing soul he is. I love that he does things on his own terms and surprises us at the least expected moments.

His face is swollen again from the drugs but we are weaning off them again. 8 weeks ago Bede's neck was stuck arched back and to the side there is no way he could have done this.

His face is swollen again from the drugs but we are weaning off them again. 8 weeks ago Bede’s neck was stuck arched back and to the side there is no way he could have done this.

I can’t even put in to words all that Bede is at the moment. He is growing and evolving and reaching but not really changing. He is all that he has always been just more so.

I feel I have come to know him so much more over the last few weeks and goodness I am so incredibly fond of who he is growing in to and yet he is just the same.

All that he has always been remains but now I see how, with control and agency, that converts to his day-to-day approach to life. I suppose I’m seeing things that I always innately knew about him but now I get to really watch in action. His determined gentleness as he masters a new skill, his calm as he tries something scary, his tenderness as he strokes his hand over the top of mine exploring my being and my soul.

Bede blog 6th sleeping

He is resilient. Despite the cancer he is developing and growing and that is really quite remarkable.

We are hoping our doctor gives us the all clear tomorrow and we can steal away down south to our dear friends’ property for a few nights tomorrow and maybe visit some other friends. There are chooks, vegetable patches, a trampoline, lots of trees, yabbies, clear stars and as much fresh air as you could possibly hope for. We are really excited to get the boys down there and sit by the fire.

We have had two weeks at home now while we postpone the chemo and treat the meningitis and despite some hospital stresses and mistakes it has been absolute bliss. It has felt close to normal. It has been enough time for him to develop a sleep routine which is such a normal thing but I have relished in it. I have loved the normality, we all have.

brothers checking out the chocolate factory.

brothers checking out the chocolate factory during a wonderful day trip to the swan valley

Tuesday was another MRI we’re not expecting anything earth shattering either way. Sometimes that’s when you get sucker punched so that makes me slightly nervous for the results in an irrational way.

Tomorrow we tap Bede’s shunt again, which involves inserting a needle into the lump on his head and removing some brain fluid. There is a lot riding on it. If the three weeks of IV antibiotics haven’t worked and any meningitis remains Bede will need multiple brain surgeries, ICU time, lengthy admissions and a massive delay on chemo which may allow the tumour to grow. Roy and I will really be left questioning how we should move forward.

We are hoping, and praying and thinking positively and just really wanting that sample to come back clear of meningitis.

He is growing, he is loving, he is living. He is evolving and consolidating and smiling. He’s been knocked down but he is getting back up.

It has never been truer…

Through it all he is small but he is mighty.

Watching the front roll through.

We were readmitted yesterday.

Bede's first ambulance ride.

Bede’s first ambulance ride.

Bede’s little soul is agitated. Wearied but not yet worn. He has been working hard, He has spent the night and most of the day sleeping on my chest. I can feel his little chest rising and falling against my own. Breathing is hard work. Huff puff huff puff huff puff.

His plump, warm, soft hands resting on my throat feel like the greatest gift, His warmth blankets me. His determinedness fortifies me. His gentlenesss soothes me. His peace envelops me.

But that is all about me, this blog is not meant to be a testament to a mother’s love for her son. This blog bears witness to the most remarkable little human I have ever come across.

Bede is grounded. His light glows. Bede is tender and he is true. His strength is gentle but uncompromising.

I’m sure I have said it before but he reminds me of a ship. Forging forward, undeterred.

Waiting and watching the weather.

Waiting and watching.

In my last blog I likened chemo to sitting at the coast watching a front roll in. I grew up directly across the road from the open ocean. I would watch the clouds gather and know the storm and the gales are about to hit. The windows will rattle and the house will shake, you’ll lose power, the storm will batter you.

Now here we are in the thick of it. The storm has hit. Bede’s little body is being battered by a bacterial blood infection, he is septic. The doctor said today the kind of bacteria and infection he has is really as bad as it gets.  He is shaken but he is undeterred and so as his mum I’m really not scared. Bede has bunkered down and is enduring the front, like our old house he has a solid foundation, Team Bede. The collaboration of so much love, expertise, friendship, prayer, science, hope, faith, grit, with the most amazing leader and Bede really does lead the way.

We have caught the infection early. He is responding to the antibiotics.

I am in awe. I think one of the most remarkable attributes a person can have is the ability to just keep on keeping on. In the face of all adversity to put one foot in front of the other and battle on. My precious son completely embodies that ability and I am truly in awe of it.

Note: This entry was written last night. Bede is still a sick little baby but he is responding incredibly well to the antibiotics. Most of his blood counts are recovering very well and that includes his neutrophils which represent his immune system. Bede is not out of the woods yet but he’s finding his way.

 

Oh Happy Day!

My cup is full. I am brimming with joy and happiness and thankfulness. A smile irrepressibly spreads from one corner of my mouth to the next. Life is grand and beautiful and saturated with colour and light.

Bede turned 6 months old on the 2nd and we celebrated. We celebrated with balloons and colours and cake and love.6 month cake

 6 months with mum 6 month with daddy

Time is a funny, elastic thing. If you asked me if I have had long with G who is 7 years I would say not at all, he is still a baby. But this week when I think of Bede I feel like 6 months is a long time. It feels like a miracle. I have truly loved and fully lived each of those days and fully immersed myself in the experience of Bede’s life. Being Bede’s mum has been all encompassing. I have held him for hours every day and made sure he has felt loved and nurtured and safe. My love for him is embossed on every cell of my being.

6 month old Bede isn’t too much different to the one month old Bede. He is calm, resolute, substantial, joyful, curious and happy. He shines. He seeps beauty and grace and oh so much light. even when he can not phsyically mould his mouth into a smile you can see the light and happiness pouring from his eyes. The main difference is now we know just how much he is capable of. He is capable of more than simply enduring. He is capable of growing and evolving through the most daunting and trying circumstances.

Bede has really taught me a lot about unconditional happiness. I mean it when I say there are times when he can not physically smile but he is happy. His happiness is not pre determined by his conditions, it is not ruled by externalities. He cultivates it from deep within. Like a kaleidoscope his happiness is the reflection of so many things , his family, his toys, a world to explore even if it can not be as vast as yours or mine, his curiosity, his disposition. At times I find myself walking down a corridor on the children’s cancer ward smiling and I feel what Bede feels, unconditional happiness that is not dependant on my environment or material things or anything and I know Bede has taught me a lot.

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent's joy at having him outside

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent’s joy at having him outside.

Other than Bede’s 6 month celebration there has been a lot of other bits of happiness floating around. Last weekend we got home for about 8 hours. The ward also had a BBQ and Bede wore a party hat. We broke all the rules and snuck some ice cream into his mouth.
He has started mouthing at things a lot and we are so excited to start feeding him food soon. I have never taken food granted and can not wait to share with Bede the adventure of taste, such an essential party of experiencing this world of ours.

Roy is obviously so proud of his little baby boy as he watches Bede commandeer his rusk. He seems excited and hopeful and happy and just really really proud.

The truth of course is there is always a balance. This post sounds boldly happy and things are but at the same time there are still moments, quiet moments, even sad moments. There is always a choice to be had. There are moments where you think that 6 months old means we’re already a quarter of the way through Bede’s life expectancy. We choose to focus on the moments where we just feel blessed to have had him this long.

At the moment he is bold and curious and an explorer. Most of all he is adored and rightly so. Well actually in this moment by the time this blog finally goes to air he will probably be asleep and we MAY have even got home! Fingers crossed. Love to you all.
6month sleep insta

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.

Sharing The Win

We have been here at the hospital for two weeks now.

ward

Today Bede had surgery. Last week Bede’s permanent line fell out so today it was replaced with an infuser port. He came through this surgery much better than his last.

coming out of surgery

He is continuing to slowly wake up from the drug induced fog. Perhaps a little slower than I anticipated in my last post but today is our best day yet. That is pretty incredible given he has just had surgery and all that he has been through over the last few weeks.

He is more awake and enjoying playing with his soft bunny.

As I write this Bede’s Dad is whispering to him how proud he is of him. The lights are dimmed. Soothing music is playing. The love that radiates from Bede fortifies us all. Through it all the soft and gentle beauty that is essentially Bede is unmoving. Who he is glimmers through the fog.

Hope for a better day swells within me and I am thankful for all your love. Be reassured that he is doing amazingly well.

How well he has come through this surgery definitely counts as a win.

Bede’s back!

smiles for bede copy jpeg

I have tried hard to write a blog explaining all that has happened but there is no point intellectualizing it. It’s been a very difficult week.

I am awash with exhausted relief. Glorious exhausted relief. Far too awash to do justice to the calm joy that wells deep within me. Most of all I am thankful. His soul is here with his Mumma, entwined for another day. His weight and light and beauty and substance mingle with every fibre of my being.

Let me tell you something about Bede, all superfluities aside he is just plain awe inspiring and incredible.

Bede is here. As has become typical his little body rose up to meet the challenges it was faced with. He some how determinedly and resolutely put one foot in front of the other and got on with the business of living, balancing grit with beauty and light. He was in the deepest pit, one that none of us could see a way out of and he has step by step climbed his way out.

He is tired, as we all are, but he is slowly rousing from the fog that the large amounts of narcotics visited upon him.  I have said it before Bede doesn’t simply bounce back as you so often hear some children do. He is consolidating his position and then slowly and purposefully moving forward.

looking up to mumma.

I’m not sure exactly how or even the exact moment we turned a corner but we did, he did. When we were still in the midst of the fog just after the pain had passed but when Bede was heavily sedated he chose his moments and then shone through. He opened his eyes and was engaged. He could not physically bring his lips to a smile but every other part of his face lit up as he looked up at his family. The little eyebrow that twitches before a grin was insuppressible and his eyes sparkled.

Now slowly, bit-by-bit he wakes. He is not a 100% yet but he is in there. Today when it was just Bede and I snuggled in together the smallest smile skipped across his face…. Bede’s back!

The last week has been overwhelming for a whole number of reasons aside from the acuity of Bede’s illness, most of them distractions, and we are all physically and emotionally exhausted.

All is not solved, we are where we were before this latest scare but that is still so much better than we were last Sunday. We are waiting to see how effective this chemo is to know how much time we are afforded. We are slowly weaning back the oxygen and pain killers. Bede lives to fight  and love and light another day.

Tonight I bathe in sweet relief. I am wrapped in his warmth. His love is all encompassing and more grounded than ever. I remain madly and deeply in love with Roy and lightened and uplifted by Gus’ joyfulness. I am so incredibly deeply thankful. We have faced our darkest moments and once again Bede lit the way.

I am so especially thankful to Bede’s primary doctor for the care and time she has given not only Bede but also Roy and I that helped us find our way through. She did more than treat him physically, she kept hope when ours erred. We are blessed to have her on Team Bede.

Most of all I am thankful to all of you. Make no mistake your love and prayers and care are real and tangible and helpful and solid and amazing. I truly believe they are carrying him through. The miracle Bede needs is all of you. We were there, teetering on the edge of the cliff and I believe you pulled us back.

This blog doesn’t sound as celebratory as it should be, my exhaustion pervades. Feel free to cheer, dance in the streets, grin ear to ear for me. Bede did it again.

As magnificent as ever.

NEEDING LOVE POSITIVITY AND PRAYERS FOR BEDE.

I had planned to put an update up yesterday explaining to you all about the new chemo and how it works. Nothing ever goes quite to plan.

I said in my last post that Bede was becoming tired. Since then his pain has gradually been increasing and we’ve been increasing the measures to deal with that pain. It has been difficult trying to manage that pain at home. Once we got to the hospital and started the new chemo it continued to intensify. We eventually saw the anaesthetist who put him on continuous morphine yesterday evening.

Our first trip to the hospital with concerns for his pain was the day after his baptism. They did a CT then. We did another CT last night. In the 5 days between the two scans the tumour has gown a centimetre in a couple of different directions. That might not sound like much but that’s massive growth in only 5 days. It is causing him all this pain.

When we were discussing this new chemo with the doctors they spoke about another little girl they had treated previously. she had a similar affliction and although she spent a lions share of a year at the hospital she then got 12 months at home, chemo free, enjoying her life and her family before she died. The concern I expressed to the doctors then was that I sensed Bede’s death was much closer than anyone realised.
The way this tumour has grown has reinforced that feeling within me.

I am devastated not because I feel Bede’s death may be close, although of course that saddens us all, but because we have had this 24 hrs of pain.

His little soul is worn. He is scattered. I think it was in the very first text I sent out letting you, our most loved people, know the diagnosis that I said one way or another we would carry him through this. So this is what that feels like.

I used to secretly dislike it when people said he was a fighter. Although I liked that people were backing him, no precious soul this young should have to know the harshness of fight. His only job should be to enjoy the world. But tonight I see him fight. Knuckle down, one foot in front of the other, fight. It’s not a fair fight but as usual he takes it on with courage and a purposeful grace.

Life hurts. If I move he cries.

He is fighting. It is hard work but under that remains Bede. His beautiful soul still here. Steadfast in its warmth and beauty. Uncompromising in the face of pain and discomfort his essence wraps us up.

On his chest is his monkey from his Uncle Vin and Aunty Maree. It plays let it be. He is snuggled into my breast and the pain in his neck is relieved and supported by the crook of my arm. He is uncompromisingly Bede. He is beautiful. He is grounded. He has weight and soul and light. He is not freely smiling but he glows. His gentle, peaceful strength remains, resolute. His light lifts us up. He is my son. My kiddo. My love.

I am praying this chemo works. Not because I’m greedy and am grabbing for time that isn’t mine. I’ve already been blessed beyond belief just to meet Bede let alone the privilege of mothering him. I am praying the chemo works because I would like a different death for him. I would like to afford him some of the peace and light he has so generously given to the world.

I have thought a lot about this post over the last couple of hours. With so many people reading now I don’t want his light replaced with sadness in anyone’s minds. I have to have faith that even times of darkness his light shines so bright, too brightly to be replaced and more importantly I have to honour Bede’s truth and his life experience and this is it. He is not in a good place. He whimpers.

Although this moment in time is difficult his light shines on adamantly.

As his mum I come to you as always with fierce determinedness, but also a new desperation, to give him the best life and death I can. I owe him so much.
I truly believe that all the love and prayers and positivity he has received from you have wrapped him up and carried him, unbruised, through this whole experience. I humbly ask you now please send him some more. he needs it. Hoping for his best outcome.

So as a dear friend and my soul sister so eloquently put it
Whether you believe in faith, science or humanity please send some love, prayers and positivity Bede’s way. I promise you he is magnificent and beyond worth it.

This is where all the cool kids hang out, sharing the love.

WOW! What an incredible few days.
My greatest fear, that our stoic, warm, solid, peaceful, smiling Bede would all too easily fade into nothingness, is slowly, person by person, facebook share by facebook share, being alleviated.

The blog has taken off. Everyone from Joel Madden to Kevin Rudd, Liverpool player Brad Jones to Chrissie Swan and so many more have tweeted support for Bede and I’m not even on twitter. All our facebook friends, the people in our atmosphere, have been reading about Bede. I can’t adequately express my deep thankfulness. It is such a gift you all give me as a mother to know my son was here, you noticed, he matters and that despite his short life he is getting his opportunity to make his mark on this old world.

We had Bede baptized on Saturday and as I walked around the corner to the church I was overwhelmed by all the people standing out the front ready to offer Bede and our family, their love and support.  Such a joyous milestone, marked with a front lawn party, gifts, good friends, champagne, kids running around, just a total celebration of Bede and his joy.
baptism church baptism church candles

The days have also been marred with some difficulties. Bede is momentarily, worn and wearied. For the first time in his life he cries with discontentment. He’s had a rough couple of days, with the new tumours have come more pain and so we have been working hard at  getting his pain management plan right. I think we are getting on top of it now.

Bede in my arms blog

Today we decided to up his treatment to the hard core chemo. It’s a difficult decision. For a while most of our time will be spent at the hospital which will be difficult for Bede and for Gus. We were at the stage where the doctors would have allowed us to just make him comfortable if we had pushed for that. But for now he is full of life and vigor and a grounded determinedness. He’s still smiling.

At the beginning of all this we promised ourselves and our families and Bede that we would fight like no one has ever fought before. We also said that when the time came we were the right people to honour his truth, his life experience and fill his life with sweetness, comfort and light just as he has filled ours. We’re not there yet and the doctors agree. He surely is tired though.

In the hospital for a short visit on Sunday, I watched as his limbs just melted exhaustedly into Roy’s arms. He took a moment, searching within himself for the energy and started producing glorious smiles. His light shining relentlessly, determinedly, refusing to be obscured.

There is an exhausted joy. A lopsided happiness. Until now Bede has just simply continued on despite his illness. I really see for the first time this illness taking its toll on Bede’s soul. I also see, Bede digging in his heels and fighting. Refusing to be robbed of his gentle peace. Its not an angry fight or battle but a peaceful protest. He is shaken but he is undeterred. He is calm and beautiful and warm and his light glows and lights up all those around him. He is powerful and gentle. He is peaceful and strong.
In this, some of his most difficult moments yet he is showing his metal and I am in awe of his strength and his grace.

The sky is falling

I am to spent to write a whole blog post so instead I will post an SMS that I exhaustedly sent out last night..

This post will not do justice to the beauty and grace with which Bede deals with this cancer. I have said it before but it remains his indelible truth – his light is undimmed.  Hopefully I will have the emotional energy to write a post on how his gentle warm and loving soul is travelling soon. The purpose of this post is just to desperately recruit your positivity, prayers, whatever love you have to throw at us. We ache with love for our little boy.

.

Hi everyone, I’m sorry to say we had some bad news today.
The tumour has doubled in size in the last 4 weeks, it has haemorrhaged in on itself, there are new legions and the bits of spread he had before are bigger.
Without chemo we would have 2-3 weeks left. With only one round of chemo under his belt we haven’t given it much of a chance to work but its not looking good.
.
Because we don’t  know how responsive it is to the chemo (traditionally not very responsive at all) we don’t how how long we’ve got with bede. At this point it doesn’t look like we’ll be getting the miracle we all so badly wanted.
.
I just humbly ask you all to keep him in your thoughts and hearts and prayers. If there was ever a time to hope against hope or  just to pray for Bede generally it would be now with the 2nd round of chemo absorbing into his resilient little body. Please send our precious boy all your love.
.
The white mass  in the attached black and white photo is a picture of the tumour to give you an idea of what we are up against.
The little boy in the other attached photo is the most magnificent person we could have ever hoped to meet. Both photos were taken yesterday.
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