moving mountains

beautiful bede laughing

I know it’s been a while. We have been busy living the highs and the lows and basking in Bede’s persistent glow. He has been growing, nourished by our deep love and with an easy happiness that comes from being in your context.

Over the last couple of months we have had some beautiful times spent in the glowing sunshine, laughter wafting through the coastal air, sipping strawberry lemonade, feeding dolphins, dozing in the gentle southern sun and snuggling into the comfort of home. Wishes have been busy coming true. We have also had some extremely difficult times, especially over the last 3 weeks as I held his lifeless body to my own watching his heart rate drop and calling for help.

I have been putting off posting until I had the space to give the joy all the room it deserves and I do not have that in this moment. Bede is busy and so then are we as he makes his latest come back. I suppose I have also been putting off posting until I really knew what Bede wanted. From the lifeless boy we worried for to spending hours laughing last night he has shown us. He is fighting. He is undeterred. He is resolute. He wants life and all the wonder that holds and he is fighting for it.

Bede’s resolve is uncompromised, hope pours from him, his eyes glisten with promise and love and his inner joy that he has gifted the world with. His gentle tenderness is profound and unerring even as he scales the highest metaphorical mountains. He is no longer our infant son he has become our little boy. He is robust.

This post is me once again laying myself at your feet and humbly asking all those of you who have followed his journey to please get behind him today. He has another MRI. He has pulled some miracles out of his hat over the last few weeks. From nearly being sent home to die to the tumour possibly and miraculously getting even smaller without the chemo to his spinal cancer possibly taking off. There is a lot riding on today.  We are in limbo today waiting to find out if we are approaching end stage or if we are able to keep on making wishes come true. (Melbourne you are in our sights!)

We are tired and we still need to wrap him up in goodness. Today any love, positivity, hope, sunshine, good vibrations, joy, belief you could send Bede’s way are really needed. Our gratitude to each of you runs deep.

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.

Understated Magnificence

I am not sure if I have been doing Bede justice. If I have been able to find the right words. Though I suspect I could search for a lifetime and there would be no words glorious enough to befit him.

You know the blog is a funny beast in some ways. Early on I would pour my heart in to it, my child was laying next to me dying, the emotion was close for the recall. At times I have felt tethered. I have recruited so many of you to back Bede and I so desperately want to bring him to the world and hold him up as a shining example and say this is beauty and joy and light. Sometimes it is hard to write and I have found myself making myself write  to honour the support you have given him. Tonight I really want to write.

I want to say that right now he is rolling back and the forth on the floor grizzling but my goodness he is oozing heartbreaking, life altering, world shaking beauty.

Sometimes his eyes are subdued but they are pools of love and hope and wisdom and all the secrets of life that he has been so generously sharing with the people that will pause long enough to gaze into them.

Sometimes his voice gives life to his discontent but the shades of light and love dance within every inflection.

His fingers reach out and grasp me and his daddy, purposefully and with hurried conviction but he is gentle and thoughtful in his purpose.

When he wakes he smiles. His laugh is round and whole and sincere it shakes his core and then it tickles mine.

His head is close to bald but that lets the gentle afternoon light glide across it a little more easily.

He looks within himself as the sunsets and finds a non medicated peace. It’s not synthetic, it’s not prescribed, I have not raised him to have it, it can not be given. His peace wells bountifully from deep within him and if you’d like a piece of his peace he’ll freely, happily, lovingly give it to you.

His light fluctuates it is true but it is beautiful light and it always has depth. When he is defiantly glowing, persistently shining and all out dazzling it is captivating.

There is some how earth within him. He is grounded and has substance and light and weight and hope. They meld together within him and he overflows with the goodness of life. He is beautiful, he is truth.

He is understated magnificence. Who even knew that existed? Understated magnificence.
And yes there will be grief but that is for me and you and his daddy and his brother and all those who have known him or of him or who have been privileged to love him through real time or cyber waves. There is no grief for him.

He has lived. He brought it.
If we choose not to measure life in longevity but by life lived Bede has out done us all. He has found joy and adventure and experience and life in the big things and the tiny things. He has calmly, minimisingly, walked through horrors and let them go.
He has been ever present in every moment. I’m sure you could not say the same.

He has brought it.

So yes there will be grief but it is not his. Yes I posted a post where you could find grief but that is not ours. For Bede is here. What a gift.

A life altering, world shaking, course defining, light embodying, secret telling, profound soul is here. What a joy!

I think the reason I started to feel tethered to the blog and started posting less was because I doubted myself. I started seeing everyone calling Bede heartbreaking. If that is what you think then, and I say this with all my kindness, my heart breaks for you.

He is beautiful and though his life may be fleeting it is impressive, it is joyful, it is the greatest gift I never even knew I was worthy of until he raised me up and made me worthy.

Through all this bigness, big words, big heart, big impact – he is tiny, he is gentle, he is precious. Unwaveringly true.

None of this is cause to call our lives heart breaking. It is not cause for sad face emoticons to be given out like they are going out of fashion. It is not cause for pity. If I am honest, and I fear I may sound abrupt, if that is your take, I pity you.

I am sorry that his light isn’t falling on your face, I am sorry his profoundness isn’t having the opportunity to raise you up, I am sorry you haven’t experienced his healing tenderness. Lean in a little closer, smile a little more broadly, love a little more recklessly, rejoice a little more daringly and you will feel it to. His shine is generous and I know it is not just confined to his family.

Yes I posted earlier today. It was a call to arms of love and happiness and faith and blind hope.  Bede is here, dancing his way through life. He has a had a bad couple of days but he is dealing with it with smiles.
Tonight Bede’s love envelops me. His strength fortifies me. His light dazzles me. His tenderness heals me. His persistence encourages me.

I urge you to get behind the boy who will give you whatever you are open to taking from him. Get behind him with positivity.

Tonight the roses are in full bloom, the breeze is in and there is magic in the air. The world is more beautiful, more light, more wonderful because he is in it.
His is a life worth celebrating.

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(I posted a shorter post earlier today. To check it out and find out why we need your positivity leading up to the 8th of Jan click here.)

Growing.

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I am not sure what to say or do or how to act. I am sitting here, as what must surely be one of the most blessed and privileged women in the world because I get Bede. I come with humility and humbleness and hope that you will as you have so many times before, get behind Bede.

Bede’s birthday was not our best.  If it were any other day we would have taken him into the hospital.

We kept him home not for the photos or the party but just to spare him being needled and examined and scanned on his birthday.
We have been averaging a couple of hours sleep a night for the last 5 nights or so because Bede is irritated. He has been crying a bit, vomiting a lot and grizzling all the time. It was difficult to get food or fluids down his tube without making him distressed.
We were monitoring him at home but knowing within our selves that the tumour was growing.

We took him into the hospital and I knew.
We waited for the scan and it felt like that instinctive feeling you get when danger is coming and I knew.
We got called into the doctors office and now they knew.
Now it was real.
We told Gus and all he had to say was “Come on!”

The scan was just a CT scan which is not overly accurate to compare to the more detailed MRI but it looks like it is growing, it looks like we have regained the 20% we lost. Combined with Bede’s symptoms that is really not great.
The doctors resumed the drug that makes Bede’s face swell up and upped a lot of his other doses to try and make him more comfortable.

Bede is still regularly laughing at us, smiling with us, loving kisses, enjoying playing his piano and is his usual tender self. But there is also distress where before there was none.

His skin is silk, I never want to forget that feeling.
When he sleeps or when he is unsettled his fingers tip toe across the bed looking for me, he grasps me for a moment and then lets go. Happy to have his space but reassured that I am close.
His laugh remains rambunctious and resilient. His magic is soft and gentle and hopeful. His light uncompromising, continuing to lead the way.
He is weakened but he is not diminished.
He is whole.

Everything I wrote in the blog on new years day remains true. He is still evolving and developing and growing.

Every time I look for heart ache there is none. My beautiful, soulful, loving boy is here and I am thankful.

On the 8th of January we have his MRI. That will tell us definitively just how bad a position we are in.

My words can not do justice to Bede in this moment and any words I do have feel like they are all about me and how much I love him and this is about Bede.
Bede is strength and beauty and substance and light and leadership and hope. He is gentle, tender, unrelenting strength and love. He is goodness.

My words fail me, but my deep love for him implores me to write today. To ask you, the people with all the hope and love and prayers and positivity that have bestowed Bede with so many miracles, to please get behind him. Focus your happiness, hope, positivity, prayers, love, whatever you’ve got on Bede. We want as much happy time as we can get to afford him a life filled with as much, wonder, marvel, joy, relaxation, love and exploration as we can. We are not greedy, we know this wonderful life will come to an end, but for now we want more. More for us and Gus but even more importantly more for him.  I truly believe your loving and hopeful support has achieved that for him before.

I have said it before and I will say it as many times as I need to…. I promise you he is so very worth it.

As the tumour grows and effects his ability to have food or rest he manages to retain his peace.
As the chaos of cancer begins to grumble and swirl he is grounded and he smiles and laughs.
As the irritation flits in and out he loves tenderly.
We love him deeply, a love that is only paralleled by our pride.

This resilience, beauty, peace and happiness is his defining truth.
He is small but he is mighty. He is uncompromisingly Bede.

(follow up post here)

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Home for christmas!

Honestly, I am exhausted. A deep blissful exhaustion that slides along easily with my joy. Being home is heavenly. My exhaustion permeates my body and I am once again too tired to do the mighty Bede justice or even find the photos that do him justice but I also feel like so many of you want to know whats going on and I owe you, his supporters, that. So I hope this doesn’t sound like a boring recount. These words may not give life to the joyful spectacle that is bede at the moment, the unpredictable elation mixed with peace.  These words are the best I have got  for now so here goes…

I can’t explain how Bede recovered. One day he was a shell of his normal self with the gentlest of lights, the next he was laughing at us, the next he was nearly off all supportive measures and then, a while later, we were home.

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Bede’s first proper roll. In to cuddle Dad
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and all of a sudden, overnight, he’s back!

I suppose the expectation would be that posting on new years night I would take this opportunity to reflect on the happenings of this past year but I wont be.

The main reason being that I feel like that is something to do at an end point and our family is still in the midst of our mission.

What I didn’t put in  my last blog was that the doctors had said that it was time to stop Bede’s chemotherapy. We did not agree with the decision, I was upset and anxious. Roy was calm and determined to get second opinions. We both felt the decision was wrong. Our guts told us it was wrong, the logical part of us said it was wrong. We did not understand why we could not give Bede a break let the toxicity recede and try again.

We had his final scan to show us where his tumour was at the end of treatment.

He achieved another 20-25% shrinkage. That’s right another, this is the second consecutive scan he has achieved 20-25% shrinkage.. We have now more than doubled our goal for the whole year.

Trying to wrap our heads around this and thinking of how we would tell our parents and even of this very blog post I said
“Just so I understand, he is now doing better than any one could have predicted. Is that right?”
“Oh yes” was the reply.

The world shifted under our feet again and now the doctors were talking about clinical trials, surgery and more chemo and suddenly there were options where before they had assured us there were none.

Bede will not let us give up on him.

On the 8th of January we have a brain scan. If in this break the tumour has not grown we continue to treat. The risk is that there is no way to measure if the toxicity in his body that caused so many problems during the last cycle has receeded. I have a knot in my stomach waiting for the news.

The doctors tell us they have never given a child with this kind of tumour on this kind of treatment a break and then recommenced. The risk is we could kill him.

That weighs heavily on me.  As always with Bede there is balance. I need to balance bravery and fight and courage with measured reserve. Will we go ahead?
Roy says yes and I am scared.

If the tumour has grown during this break that means we are putting Bede through all of this only to buy a few weeks before growth. We would not continue to give him chemotherapy if that happens. To continue would be undeserving of a boy who has given so much and who deserves as much of the world as we can give him.

Now we are at home and  life is sweet. We have been here a while.

Bede is smiling a lot. in fact he will be lying on his own on the floor in the quiet and just start laughing a rambunctious belly laugh.
He spends a lot of his time laughing.

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He draws his legs up underneath him, pushes his little bottom in the air, lifts his head so high in what is a strong attempt at crawling. He then topples over onto his side and lies there seemingly contemplating his position. He is strengthening, developing and growing.

He plays. Santa came but his brother gave him his favourite toy. A little piano that Bede will happily sit there and play with for half an hour.

Santa came!

Santa came!

He swims! He has been in the pool a couple of times now and the last time he was so relaxed he rested his little hands on my chest and stretched his body and kicked those little legs.

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laughing during his first swim

He rests. Peacefully and calmly. Undistrrbed by beeps and buzzers and temperatures and blood pressures. He lays in the sun or in the middle of our big  soft bed and he rests. It is divine.

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He cries. He cries with agency now not distress. He cries to communicate. I want my mum, I want my dad, I want a feeding session, I want to play.

He talks. He spends so much time trying to mimic the words I say or just having the longest conversations

He does all of these things and I delight.

 

I delight at two brothers exploring their santa toys together. I delight at our baby laughing his way through new years eve dinner. Chuckling at kisses. Trying to crawl. Exceeding expectation. Resilient and filled with hope and love and strength and light and when people ask me to reflect on 2013 it can not be summed up by facebook’s new “year in review” app. It is not easily summarised. It is delight and it is gratitude and it is hope.

2013 has gifted me with being more of myself than I have ever been, being the kind of person that I would hope I would one day have the opportunity to become, new friendships, deeper friendships, an unshakeable faith in my marriage, a continued gift in G and a brand new gift in Bede.

2013 has on the whole, been a blessing.

Sitting in the hospital room after the scan that revealed Bede’s tumour we were given weeks. We have just celebrated our first Christmas, bede’s firt new years and tomorrow, the 2nd of January, a day that we prayed we would make. Bede’s first birthday.

While these firsts are beyond sweet. My mind cant help but flit forward. Soon we will be making seconds and I think that had been beyond my imagination. Soon it will be the second time he’s been at his parent’s birthday and after that his second easter.

The love and positivity and prayers you have gifted us with in 2013 were beyond our wildest hopes. My greatest hope for 2014 is that you will continue to marvel at our boy with us, continue to wrap him up in hope and love and prayers. I am sure they have carried us this far.

I haven’t given much thought to my new years resolution but I suppose it is to remain resolute, unwavering, determined to defy the odds with a little boy who is more than capable of doing just that and laughing while he does it.

From our family to yours wishing you a Happy New Year!

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The balance of power

I hoped but did not expect my open letter to reach Gervase Chaney’s desk. I certainly didn’t expect over 1000 Facebook shares in its first 36 hours. As the response grew bigger I was at the hospital with Bede and I started thinking about taking it down and I didn’t expect other parents to ask me not to. I certainly didn’t expect the influx of messages, emails, comments and approaches of so many other mothers thanking me for using my voice. I didn’t expect the regret from people who had been through this and had not used theirs. I didn’t expect the level of emotion behind those responses. I didn’t expect the advances of media. I certainly didn’t realize just how many of you have Bede’s back.

I think the hospital is empowered in a lot of ways and sometimes that is a negative, petty and bureaucratic power. I think Bede’s power is in the mass amounts of love he can generate and mobilise. I think that is a strong, refreshing and positive power that cannot be underestimated. I think that power is testament to his light.

In all the reactions I have had I had negative feedback from about 4 people.

I am all about honesty and accountability and context. My reactions in the letter did happen. I was desperate and I did raise my voice and I know some staff did not like that but there was context to them.  My letter provided that context.

The letter was aimed at a bureaucratic decision that removed reactions from their context. Towards the end of the meeting Dr Chaney told us he would aim to review the decision within 24 hours. Nothing was going to have changed in that time. We sensed he knew the decision was wrong but that he was standing by it anyway. Whether we were right in sensing that or not the decision was petty and bureaucratic and it was unforgiving punishment toward a family who have tolerated and forgiven so much. The letter was context. We are not threatening people.

Now let me give you the context in which some of these incidences have occurred. They occurred in a big picture.

One that also includes the nurse who I thank repeatedly every shift because I feel when she is on I am off duty and know Bede is in the best hands possible.
The nurse who must be the only other person in the world who can sense something is wrong with Bede before I can.
The nurse that sat with Bede after her shift had ended while we were in a meeting because it was an important day for our family.
The doctor who said we could call her anytime over the weekend while she was off duty because I was so scared without her advice I wouldn’t know what to do.
The same doctor who is so giving of her time and energies not just to Bede but also to our family.

The nurse who makes sure she talks to Bede while she is treating him.
The nurses that head into Bede’s room on their way to tea break to squeeze in a quick cuddle.
The nurse who bakes nearly every shift and then SHARES it.
The doctor who in the middle of a Bede emergency made sure I got a juice to help stop my shaking.
The specialist who drove from Fremantle to Subiaco at 7:30 at night because he wanted someone who knew Bede to review him.
The nurse who rubbed my back and encouraged me on when no one would listen.
The doctors who brought him back
The doctor that listens.
The coordinator that understands.
The nurse that empathises.

I think the word ‘mistake’ is too generous for the incidences I detail in my open letter and there are many more of them. There is also a lot of good staff.  I think I acknowledged that in the letter. A lot of those staff are also outraged when these things happen.  I certainly do not want to be the person that “paints them into a box” as one criticism said.
Our voice empowers our family but it is not a petty unfair empowerment. It is an honest, true and positive power.
The letter is true. It was never meant as a criticism of the nurses or individual doctors. It provided context for a petty bureaucratic system and a petty bureaucratic decision that robbed my boys of precious home time together.

Although I am sure Dr Chaney does not need nor desire a disenchanted mother coming to his defence he seems like a nice man. He is a doctor for sick children, a father. He allowed us to say our piece in the meeting even if we did feel as though it fell on deaf ears. I asked Dr Chaney if given the exceptional circumstances and lapses if he could say he would have acted any differently and he admitted that he could not. This is not about a witch hunt. My letter was addressed to him because he represented the system that day and although he seems to lead it he is only one part of it.

The treatment that we required HITH for has finished. We still seek some reassurance that that service will be available to Bede in the future and have none. Despite Dr Chaney assuring us in the meeting that he would attempt to have his grounds for refusing us this service in writing and provided to us within 24 hours and also that he would provide us with details regarding any documented incident within the last 6 weeks, the main period for which he was making his decision, none of this has happened. We have not heard from PMH in regards to this matter. Ultimately Bede is still not availed of HITH.

At the end of the letter I said that was a one off post, that Roy and I felt the need to speak out about Bede’s reality but I am posting this today because I do not want to be the person that uses their power in a negative way. That is not and has never been what Bede or our family are about.

He may be small, but he is mighty.

– Isabella and Roy

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This is who it is all about.                                                     Bede helped us decorate the tree last night.
A proper Bede update will follow later today or early tomorrow. He is doing well. He is shining, he is developing, he is irrepressible and our love and pride run deep.

An open letter to Gervase Chaney

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Bede’s like… “really?! you fools still carrying on like this?”

To Gervase Chaney (Chairman of the Paediatric Medicine Clinical Care Unit at Princess Margaret Hospital for Children),

It was very interesting meeting you in our impromptu meeting yesterday during which time you informed us that the hospital would not be offering the Hospital In The Home (HITH) service to our young and precious son Bede. A decision which for the moment, as we told you, has a great affect on my husbands employment, my older son’s general well being and Bede’s enjoyment of whatever life he has left. I know certainly it has a great affect on my own well being and enjoyment of my son’s life.

I think most interesting, given our family’s history within this hospital, not least of which was Bede wasting away on 8A, becoming increasingly emaciated and distressed while the scans we were transferred to PMH for were denied to us because “his brain is fine” despite our constant advocating to have his brain checked while ultimately his cancer was growing and spreading throughout his body, most interesting is that the first time we have met you is in denying services to Bede that greatly effect his quality of life because you don’t like the way we have handled ourselves. Let us let that sink in for a minute …. you don’t like the way we have handled ourselves.

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This is a photo of Bede the day our private hospital transferred us to PMH for a brain scan.

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This is Bede, still weeks away from your staff agreeing to scan. The photos that came weeks after this are too graphic to publish. 
In hindsight the only thing I didn’t do during this time as I repeatedly advocated for Bede was raise my voice.

In fact we both know the context here is extensive. Lets consider it.

In denying the HITH service to our son you said that staff are intimidated of me because in the past I have raised my voice while advocating for him. Not that I have ever threatened any one, not that any one would ever suggest that I have been physically aggressive, not that I’m a nasty person, not that I have personally attacked or pose any threat to your staff, not that your decision is based on any documented complaints or incidences just that I have raised my voice while advocating for him. In fact it is acknowledged that it is some kind of “perceived intimidation” rather than any actual intimidation having occurred.You told me that you would within 24 hours provide me with details of the staff’s recorded incidences for the time period on which you are making your decision. Considering you have not done so I assume as you suspected none exist and there are no solid grounds for you denying this service to Bede. Sorry, I should say no solid ground other than that before Bede’s diagnosis I was a law student and my father who I do not have a close relationship was once upon a time lawyer and as your staff have said we apparently work in a fictional lawfirm no doubt spending our time plotting against PMH. This contrivance is so far beyond me and even if I were still a student that is no reason to deny services to Bede.

I want to look at the context in the hope of achieving for you some balance.
Let me be clear and honest and accountable. I have indeed raised my voice. I have raised it and I have said “this is not acceptable for my son”. It is a decision our family has been forced to make too many times. As one or two parents among a ward full of staff who are supported on multiple levels but do not listen to the sometimes hours or days of quiet, polite, repeated requests I have raised my voice to be heard. Bede has no voice of his own and too often when I do not raise my voice my own is ignored.

The HITH service is now being withheld from Bede because in the past I have raised my voice and staff members find that intimidating.
Here’s the context :
These are the same staff members who ‘forgot’ to provide Bede with IV antibiotics when his brain shunt was infected despite repeated reminders from our family, despite them telling us they had been administered they simply forgot and then did not comply with hospital policy in regards to lodging an incident and said “oh well”.

Who despite me reminding them Bede needed his steroids, despite the staff reassuring us they had administered them and despite Bede being left screaming with high pitched irritation for hours the staff later remembered they actually hadn’t given Bede his medication. They then fudged the notes.

The staff who during a 48 hour period gave his four hourly morphine between anywhere from 1 to 7 hours apart because they were too busy to administer it on time, because we are not the only children in the hospital or left him vomiting and screaming in pain because they forgot his morphine all together and it was our fault for not ringing the nurse call bell more often.

The staff that left my severely immuno-suppressed, neutropenic son sitting in a dirty infectious room with a second hand oxygen mask and a container full of the last patient’s secretions while they went for their lunch break after hours of us quietly advocating for Bede to be moved to room that did not pose a risk to him.

The staff that chose not to listen yet again while Bede’s condition worstened.

The staff that left Bede screaming in inconsolable distress, which started to induce oxygen drops, because everyone was too busy to administer his prescribed relief because there were “not enough staff”. I raised my voice, begging them to find the time to help him.

I find it hard to believe that in these situations the most intimidated person in the room was your staff.

These are some of the people we did raise our voices at saying “this is not good enough”. I wish these were the only problems we have had or even that they were the worst but we both know they are not. Who we didn’t raise our voices at was the HITH staff in our home who despite us telling them more than 24 hours in advance that Bede’s medication was about to expire ordered none because it was and I quote “too expensive” and left him with compromised antibiotic coverage while he fought life threatening meningitis and yet this service is being withdrawn.

I am sure your staff are intimidated by a family who are willing to point out where they’ve got it wrong. No one likes to be wrong. That does not mean we have done anything worthy of having our son denied services.

Indeed I often find all of this very intimidating. I find it intimidating that people could be so careless with Bede’s well being.That life saving antibiotics could be forgotten or “too expensive” to order. That schedule 8 narcotics could be administered so carelessly and recklessly that times aren’t even adjusted to preserve his respiratory drive. That neutropenic children are entering infectious rooms that have not been cleaned properly.

I find it incredibly intimidating that so often Bede’s care is really and tangibly affected by your lack of staff.

Most of all I find it intimidating that we can quietly and politely advocate for anywhere between hours and days and no one listens. That our family has no choice but to raise our voices to be heard, to minimize the effects of your hospital’s short comings on our son but that takes and has taken a huge toll on us.

I find intimidating that a man like you, can sit across from a family like us in a meeting, and reject that that is the only way for us to get results. I challenge you to show us one other way that we have not explored in the past with great failure. Indeed we have done everything the hospital have asked of us and you were unable to say you would have done differently.

Yet the hospital has no perspective. No ability to self examine and see what is going wrong, what effect these problems are having on Bede, and how we could minimize it happening in the future. Even more than intimidating I find it disrespectful of Bede and I resent that rather than addressing these issues the focus is firstly on covering your own behinds and then on the times we have been pushed to raise our voices in the hope of being heard as we say “this is not good enough for Bede”. My understanding is that staff who have neglected to give Bede vital medications haven’t even been counseled on the matter.

I find it intimidating that because our family dared to stand up and say ‘No, this is not good enough’ in the only way to which you would listen Bede is now denied a service that is vital to the enjoyment of his short life. I find it very intimidating that we have to choose between advocating for the best possible outcomes for Bede and him being punished for us doing so.

Of course it is important to remember that Bede has had life prolonging treatment at PMH.  We are acutely aware of the gift of time that the staff have afforded Bede and that a lot of times the staff are amazing. There are a number of staff at the hospital that are so much more than we could have ever hoped for for Bede and we are deeply thankful however, the gift of time does not excuse the carelssensess or needless pain or stress on Bede’s body and the need to advocate remains. In fact many times our advocating comes with the quiet but firm support of staff members and indeed has been encouraged by some staff for fear of where Bede would be or what he would have to endure without it.  Mostly that support comes from staff you may not have expected support to come from, nurses we’re not at all friendly with at times imploring us, urging us to go on. Acknowledging there is no choice. Whether they dare say it to the manager that tacitly enables these problems or not these same staff are dismayed by your current decision.

When your staff compromise Bede’s care in ways that will have real and negative impacts on our son’s enjoyment of his short life we will continue to advocate for him. He is worth it. We will continue to be intimidated by the fact that your staff’s negligence has endangered his life in the past and that you use our frustration as a means to deny him hospital services but we will continue to advocate in the face of that because despite our intimidation we are still obliged to do our job even if you are not compelled to do yours.

Really you should be thanking us, I suspect you would have had a lot bigger problems on your plate than a cross but controlled mother had we not advocated.

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Bede’s had enough and so have we.

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I have never posted the negatives of our journey on this blog before.
This is not even a handful of them.
We have instead sought to focus on the positives.That enables us to enjoy Bede and we are also mindful any negativity can impact upon other families.
The main reason I have never shared this information is because I did not want  it to detract from Bede’s shine but I suppose it is testament to Bede that he shines in spite of it.
Roy and I think it is important to share now. We think it is important that Bede’s reality is acknowledged. I hope those of you that come here to find out how Bede’s soul is travelling will bear with me for this one post.
I want to say publicly this is not good enough and I wanted to invite you to say it with us.
A proper Bede update is to follow. He is splitting his time between hospital and home and he is still with us and is of course shining.

 

  • EDIT: Comments have been disabled in this post.
    I think it is very important to advocate for Bede strongly and truthfully and demonstrate that while the bureaucrats have the power of the hospital behind them Bede’s power is in the love he can generate. It is a positive power and I think that is important. We have had nearly 1000 Facebook shares in around 24 hours. Please keep sharing the Bede love.
    We are indignant and we are humbled.
    Issy

Bright blessed days and dark sacred nights.

This will be one of my longest blogs. A lot has happened in a short period of time and I am too tired to make this post beautiful, too tired to make it appealing, too tired to cull the boring bits. This is what it is. Bede’s truth.

The last week started with an ambulance ride and ended with so many of us praying. Here’s what happened.

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After arriving at the hospital on Monday Bede started to deteriorate on Tuesday night and we started to worry that we were losing Bede.

He was fighting a winnable battle but he was exhausted and he was coming from behind. He was more tired than we had ever seen him and just breathing was hard work. For the first time ever he was finding it difficult to shine through and that was devastating.

I sent a message to our family and friends recruiting love and positivity but even as I sent it I knew one part wasn’t true. “there must be more to come”. I realised he had filled us up, his light has shone bright and he has been more than enough for our family. That scared me even more. Perhaps it was time.

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My gut told me it was line ball and we were in trouble. The doctors agreed it wasn’t good and we may lose him. Bede fought valiantly but I was losing my boy.

Come Wednesday afternoon I asked for a moment alone with Bede. I whispered in his ear that I loved him. I sat by his cot holding his hand and told him the truth. I told him he is magnificent and that he had exceeded all expectation. I told him he had made me happier and given me more than I could have ever asked or hoped for. I told him he had done enough now and if he was tired and if he wanted to go that was ok, he could. He had given us more than I could have ever hoped and if he chose to stay around for a while it could be our turn to give back to him but whatever he chose was ok.

He was exhausted.

ICU came and gave him more supportive measures. My incredible husband Roy describes it as “he was standing on the edge of the cliff but not looking down”. We were maxed out. Any more support meant we would have to be transferred off the ward to ICU; he would need to be anaesthetized and ventilated. We needed to consider what our wishes were for Bede. Our primary doctor one of Bede’s biggest advocates said that should the time come we ventilate. For now we fight and that made sense because he was still fighting to. She acknowledged we were in a bad place but told me she still had faith in him. We both decided it was time to get Gus in to see Bede just in case. Gus brought unconditional healing love into the room and sat by Bede as I held him and Gus read to him for a while. Then overnight what has become almost the ordinary happened. Bede put his head down and one foot in front of the other and he worked. Slowly but surely he reclaimed himself. He shined again.

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We had about  24 hours of peace. Bede remained maxed out but we suspected he was able to progress and were just giving him a chance to rest. Then it all turned again.

Bede’s body writhed and thrashed uncontrollably. He screamed in distress.

We kept pumping him full of an array of IV drugs to try and stop it but nothing worked. ICU came down and spoke to us about the possibility of anaesthetizing him and ventilating him until hopefully this episode passed. We were now losing him again but in a completely different way.

The on call consultant who knows Bede well talked to me on the phone at 4am. He said it was time to stop the drugs, they weren’t working. There was nothing we could do to make him comfortable. It was time for us to just hold him through it. That was the hardest thing I have ever done and late that sleepless night I wrote this:

I have always said Bede’s resistance to cancer was much like a peaceful protest, his gentle strength forging the way.
Tonight it’s all out war. It is violent. He is in the trenches. He is fighting a messy, dirty battle and he is doing it with grit and determination.

It almost reminds me of a shark feeding frenzy. The waters obscured by the movement, frantic, fast. His limbs are flailing his back arching, he’s cycling through uncontrollable movement and agitation before managing to ground himself for just a moment before the next round. It is unrelenting.
I’ve never liked the word fighter for Bede, I’ve always found it too abrasive for his gentle soul but tonight he is fighting for his peace, for his light, for his life. Refusing to be taken easily, refusing to leave his big brother just yet, refusing to be robbed of what he has rightfully earnt – some time off treatment by the beach enjoying life.

It was pretty accepted that Bede wasn’t aware of us at that point but I refused to believe I couldn’t reach my baby on some level. I spent the night trying to pour love into him so in the midst of his despair he wouldn’t feel alone. It took every ounce of my being to smile as I sung “this little light of mine” my voice shook and my mouth trembled but I smiled and I sung and I tried to fill him with positivity and love and so did his daddy. I think we all found out just how hard we can fight that night.

imageEven in the depths of his despair, as he thrashed and wailed, he paused. He became Bede. He looked at me and he smiled, his light shining brilliantly, dazzling until seconds later he succumbed again. He took a moment to remind us just how hard he can fight, to remind us it takes a bit more than this kind of horror to keep him down. As he thrashed his light was dimmed but unassailable he glowed. His gentle loving soul fortifying us reminding us to be peaceful be patient.

On Friday morning after 12 brutal hours neurology saw us. It wasn’t seizures. He was aware of us he just couldn’t show us that. The movements were coming from a different part of the brain and were not sure why it’s happening. Finally early yesterday afternoon we got it under control. A lot of those measures have a sedative effect so he is catching up on his rest.

Now he sleeps. His vital signs, his heart rate, his oxygen, his respiratory rate are all good. We have managed to do a miniscule reduction in the support from ICU, it is a reduction nonetheless and soon we will start him on a tiny feed of 5 mls an hour. It will be the first time his body has had food since early Monday morning.

Today he gently tip toed his fingers across my own, he smiled gently but purposefully. He is resilient.

Last night Bede’s aunt came and played the guitar and serenaded him. Her chords permeated his upset and he relaxed. She played all his favourite songs and created a few new favourites. She helped me help him resist drifting back into despair and helped us give him some sweetness.

If we didn’t know already over the last few days we have found out what our son is made of.

Bede is weakened but he is not diminished, his strength incontestable, his light indelible. His soul glistens with hope and love and beauty and light and joy. He is a blessing in its purest form.

The fight is hard but he is soft. He is tender and he is warm. The fight is robust and he is delicate.

Although it is not perfectly apt it reminds me of a quote that I came across some time ago.

 Returning violence for violence multiplies violence, 
adding deeper darkness to a night already devoid of stars. 
Darkness cannot drive out darkness: 
only light can do that. 
Hate cannot drive out hate: only love can do that.

So yes the fight is hard, the cancer is dark and Bede is soft and glowing and tender and I feel like that is just what he needs to be. It is not fair and it is not right and this did not “happen for a reason”. It stinks but if there were ever a baby up to the challenge you better believe it is Bede. His soft beautiful love, his gentle soul, his resilient tenderness and his purposeful persistence have him in with a fighting chance and for this fight I’m backing Bede. Cancer ain’t seen nothing yet.

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I want to add a thanks to all the nurses who have surrounded him and us with genuine care this admission and who have prayed for him. Who have made us feel like Bede matters and is valued even in this environment that he is more than just a number on the ward that he is cared for. I want to thank everyone who has sent him love and positivity this past week. From virtual strangers to our nearest and dearest thank you. Your love strengthens him and us and enables him to work his magic.

Bede has been remarkable.

If he chooses to go it is ok. He has done enough and I have tried to be enough. Mothering him has been a privilege. I have tried to empower him to make his mark through this blog and through all of you. If he chooses to stay that would be a dream but if he chooses to go I hope you will help me to wrap him up in love and tenderness and light and joy and soulful kindness. In the meantime, while we wait, I hope you will help me fortify him with love and positivity as his light has so often fortified me for the fight.

As I nuzzle my head against his own I am at home in the world and I count my blessings.

(I did a photo post earlier today showing some of the last 6 weeks including our happier times and times of growth and joy. you can check it out here)

Photo update.

sharing a joke

sharing a joke

This last 6 weeks have been a gorgeous time of happiness, abundant laughter, growth and development.
I was working on a post a while ago and wrote this…

I want so badly for this blog to represent Bede’s gentle, strong, light filled soul. I want it to represent his resilience, his tenderness, his strength and just how profound he is but sometimes like right now he’s just my boy and I’m just his Mum. Its as simple as that and that is more than enough for me and him and our little family existing in our blessed little world. We are happy. I am busy being a mum and he is busy being a joyful little boy.

Some of you may know things have changed for us in the last week but I wanted to  share all of this with you nonetheless. The updates have been few and far between because we have been busy relishing in life and the joy of Bede.

I have another blog to go up in an hour or so. I know many of you are waiting for news on Bede. He is small but he is mighty.

Is x

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Bandana day for canteen

Bandana day for canteen

teething on the couch. happy to be home

teething on the couch. happy to be home

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so much chemo

so much chemo

hey kiddo...  you're meant to be sick

hey kiddo… you’re meant to be sick

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ede shining gently, overcoming sepsis

ede shining gently, overcoming sepsis

walking in support of  kids with cancer

walking in support of kids with cancer

swelling is starting to go down

chilling with the amazing Abby

chilling with the amazing Abby

irrepressible

Bede's 10 month birthday party kicked on onto the night

Bede’s 10 month birthday party kicked on onto the night

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irrepressible

irrepressible

and they said he wouldn't eat!

and they said he wouldn’t eat!

image he loves it. image image loving sweet potato

first water fight

first water fight

chilling out at home

chilling out at home

so sick, so tired, 2am chemo blues

so sick, so tired, 2am chemo blues

image imageimage first meet up with santa. He was wearing thongs not too sure if it was legit? carols by candle light with Gus in the choir

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.