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.

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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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

bede tree

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.

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!

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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.