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.

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

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.