It's never about giving up

Palliative Care. It's been in the news a lot this week.  And as I've seen yet another case of a child who needs a referral to palliative care being played out on social media I realised how little people really understand by the term.

All this week I have seen the negativity associated with the words and it has shocked me.  Because the perception that those people on social media had on social media bore no relation to the reality we had experienced.

We knew from the beginning that Daisy was life limited.  That she would not reach adulthood.  She was born with a sporadic gene mutation that increased her risk of cancer, sudden cardiac events, complex disabilities.  We know that many of the children with the same mutation do survive to adulthood, there are some who are in their forties even.  But Daisy was always going to be different.  She seemed to have an extreme form of the syndrome, potentially a secondary undiagnosed syndrome at play.  It was clear that there was too much going on and too much need for constant medical intervention to be conducive to a long life.

Andy and I accepted that from the offset.  We knew our time with Daisy was finite.  We were just determined to make the most of our finite time with her.  And that's where palliative care was so important.

Daisy was referred to the hospital palliative care team when she was seven.  I, like many others, assumed that palliative services were only brought in at the end.  I now know so much more.  That early intervention by palliative services was crucial, it contributed to ensuring that we were able to focus on Daisy's quality of life.  In fact the words used regularly by the consultant caring for her were "symptom control".  Daisy's pain was getting out of hand, she was on so many drugs it was difficult to know what was a drug side effect and what was pain.  With the help of the palliative consultant we were able to wean Daisy off some of her drugs so that we could identify which were the most effective in treating her pain.  A symptom care plan was developed so that everyone caring for Daisy understood what medication and doses were available and how to escalate them.

Some nights at home when I struggled to control Daisy's pain (her pain was always so much worse at night) there was always a member of the palliative team on call who could advise me.

We discussed our priorities for Daisy.  Optimising her time at home, minimising her time in hospital, maximising her quality of life and preparing plans to ensure that when the time came we would know and we would be able to support her in having a dignified death.

We made it clear that we wanted to ensure that Daisy was able to do the things she wanted to do; go to school, spend time with her family, be a little girl.  With her team we decided that as the window of Daisy being able to do the things she wanted to do closed we would constantly assess the situation.

I look back now and we did exactly that.  Daisy's deterioration was slow but it was obvious.  She lost the ability to walk, she developed severe seizures, her ability to communicate was reduced, she became more and more lethargic but this happened very slowly over a prolonged time frame and with the help of the pallitiative care team both at the hospital and the hospice we were able to support Daisy and optimise her quality of life.

Any procedure, test or surgery was always decided against the main criteria; "Will this improve her quality of life".  She had a couple of big surgeries in her final years, I know that there were discussions at an ethics panel about whether it was right to put her through more major surgery.  In the end we took the risk, her final surgery, while Andy was still alive, made a huge difference to her pain and we were glad that everyone agreed it should go ahead.

We talked about end of life plans.  These were always very open, frank discussions.  The doctors could not give us answers about when she would die or how, they did not know themselves.  She was always defying the odds, she would be overwhelmed with sepsis and we would prepare for the worst and then she would turn the corner.  We knew what all the options were however.  We allowed ourselves to think of the end of her life so that when it came we would be prepared and know what we wanted for our girl.

The irony was that those conversations with the palliative care team were even more important because it enabled Andy and I to be on the same page about how we would support Daisy when she was at the end of life stage.  We both agreed that we would not go down the route of a tracheostomy for her if that was the only option, she was already dependent of 24/7 intravenous nutrition to live and had four other stomas beyond her double lumen hickman line.  At least after Andy died of cancer just before Daisy's 11th birthday I knew that we were both in agreement and these things had been discussed.

Daisy's health deteriorated rapidly after Andy died.  That window of life quality I had discussed with our consultant was closing.  I remember the Christmas before she died, I just wondered how much we were now playing God.  She was struggling to keep going, her frustration was manifesting in challenging behaviour, she was becoming tired, she was losing more and more of her skills, we were losing Daisy.

When Daisy was taken into intensive care overwhelmed with sepsis it was still difficult to see that this was the end.  We had all seen her turn the corner from this point so many times.  But this time was different.  Everything the doctors tried did not work.  They had worked before.  She was struggling and exhausted.  She was sedated and a breathing tube was put into her lungs and she was attached to a ventilator.  I hoped that it would allow her body to rest and fight the sepsis.

But then her heart stopped beating and as I ran into her cubicle to see the doctors performing CPR on her I knew that I had to let her go.  I knew Andy would say the same.

I asked the doctors whether we could transfer Daisy so that our hospice team could come and switch off the ventilator at home.  I knew from previous conversations around end of life plans that compassionate extubations could happen at the hospice so why not at home?  But she was too unstable, she risked  dying in the ambulance en route.  This was not what I wanted.

The doctors successfully started Daisy's heart again but I knew that she was gone.  They talked to me about starting dialysis, about other life support interventions but I knew that our window had finally closed and it was time to say goodbye.

 I let my girl go.

It was the hardest thing I have ever had to do but I know that despite the fact that we were in a hospital, in a highly medicalised setting, we gave Daisy a good death, she was surrounded with love, we had given her everything we possibly could, we had left no stone unturned in ensuring she had the best life possible.

Our palliative nurse was with me when Daisy died.  We had known her for many years.  She helped the other nurses remove the medical equipment, she liaised with the hospice and the undertaker, she knew what to do .

Daisy's palliative consultant cried.  Just like many of the nurses and doctors who had cared for Daisy over the years they had got to know the little girl beyond the patient and they were as devastated as we were.

Daisy was moved to the bereavement suite on the ward and nurses came in and helped me wash her.  That evening we went home .  Our hospice nurse had set up a cold mattress on Daisy's bed and when the undertaker arrived they tucked Daisy back into her bed for one last time.  She was home.

Palliative care gave my daughter a good death.  It gave us options.  It gave us support and most importantly it gave us the gift of time with Daisy.  I accepted her life was limited, deciding to no longer pursue active treatment unless it was to enable her to have a good quality of life was empowering.  It was never, ever about giving up.

I have shared our story because I have realised that there are so many misconceptions about children's palliative care.  The reality is sometimes there is no cure and children die,  sometimes doctors do not have all the answers, sometimes medical science can only go so far.  It's about time we had more open conversations about these issues.

When Life Gives You Lemons: Danny Germain

Here's another interview as part of my When Life Gives You Lemons series.

 I've known Danny and his family for many years.  Danny's step-mum, Marion, was one of Andy's closest friends and he turned to her for coaching support to help him with the mental strength he knew he would need when he was diagnosed with cancer.  Marion was also one of Daisy's Godmothers.  Danny was a small boy when we first met him and it was years before we were entrusted with the secret that Danny had carried with him since he was little.

Photo of Danny Germain smiling at the camera

Tonight I'm thinking of.......

Tonight I'm thinking of the mum of the 18 year old first year nursing student who answered the ward phone during a night shift to have the word "murderer" screamed at her down the line.

Tonight I'm thinking of the little girl who is lying in a hospital bed desperately ill as her family gather around her bedside listening to the sound of protesters outside.

Tonight I am thinking of that girl's aunt who had to have a security guard escort her to the ward to visit her niece.

Steph with her head on Daisy's head as Daisy recovers from a general anaesthetic in a radiology suite with lots of medical equipment in the background
Andy took this picture of Daisy & I in the Interventional Radiology Suite,
as she recovered from her 13th central line insertion

Goodbye Daisy – A very special children's book

Daisy loved school.  Nothing made her happier after a hospital stay to put on her school jumper and know that it was a school day.  Always the bounce-back child she could be gravely ill with sepsis one day, then desperate to get off to school to see her friends and do some "busy work" the next day.

picture of daisy age 3 holding out her arms to be picked up, she is wearing a white party dress and smiling

Daisy was the life and soul of her school, everyone knew Daisy and she knew everyone.  She had been going to the same school from the age of 3 and despite her deteriorating medical needs over the years we always found a way to make sure she got some school time.  In her later years school time was limited as her stamina decreased, days were shorter and then she attended for less and less days but she still got to school when she could.

Daisy had her special circle of friends, she had her favourites, she had fallings out with friends, she had best friends, she had favourite teachers, she was just like any other school girl.  In fact she also preferred the social side of school rather than learning and as she got older her teachers had to find lots of different strategies to get her to stay on task as there were so many more interesting things to get up to in the classroom!

Daisy went to a special school, there were lots of children with complex needs at her school, it also seemed that not a term went by without a letter coming home to tell us that one of the children within the school community had died.

Children with additional needs are statistically more likely experience the death of a friend during their school days.  Daisy's death affected the whole school.  Daisy's ability to bounce back from the brink had become a given, everyone was shocked when this time she did not bounce back.  The school got together and talked about Daisy, they played her favourite song from Frozen and released pink balloons and a social story was developed to help the teachers talk to the children about their grief.

Much of this work was thanks to Ella, Daisy's movement therapist, she understood that the children needed to express their grief and feelings even though many of them were non-verbal and communicated mainly via signing.

picture of steph smiling at daisy who is dressed as an angel with tinsel in her hair
Angel Daisy ready for the Nativity play

It struck me how lucky we were to have Ella, she had worked with Daisy for many years, helping her articulate her feelings about what was going on in her life through play, movement and stories.  Andy and I had fought hard to have mental health support included in Daisy's EHCP plan and we were fortunate that Daisy's teachers were able to find a solution.  When Daisy died the school responded and helped Daisy's friends with their grief but I found that there were limited off the shelf resources for just this scenario.

 I had looked for books to help Daisy when Andy died, many of the ones targeted for children were just not appropriate for Daisy.  Daisy had a learning disability, she liked direct language, many of the stories were around animals dying and used metaphors or the books were just too complicated for Daisy.  She needed a social story to help articulate her feelings, feelings which in children with a learning disability can often by quite literal.  After Daisy died one of her friends was really concerned that she had not taken her wheelchair with her.  These were the sort of issues which were important to the children in Daisy's class. 

So I have decided to plug a gap in the market and I have written a children's book which is aimed at helping children with learning disabilities communicate their feelings when one of their friend dies.  It's written from the point of view of one of Daisy's friends.  I was really struck by the direct questions many of them asked.  Children are great, there are no metaphors, it's very much black and white, "she's not coming back". This doesn't mean they don't feel sad or have lots of unanswered questions.  When I visited a friend not long after Daisy died I was aware that her little girl Evie who has profound learning disabilities was aware that I was Daisy's mum but was confused because Daisy was not with me.  I wanted to write about Evies feelings and the questions she would have asked and the things she would feel if she had been able to speak.

I have also written a section on what I learned about tackling the subject of death with children with learning disabilities , from talking to Daisy about Andy's illness and death, ensuring  she felt involved in saying goodbye,  to how Daisy's friends felt when she died and how I wanted to help them feel included in mourning for her.

I have also asked the wonderful Ella to write from a professional's point of view, including some information and guidelines for schools, parents and carers to help them when a child from their community dies.  Lastly I hope to include a selection of relevant makaton signs to use when discussing grief, sadness and loss with children with learning disabilities.

This is clearly a very niche book but so essential, it could also be relevant for younger children and children on the autistic spectrum.  I could spend ages pitching the idea to publishers and agents but all that time I'm doing that the book could be out there and be available to support grieving children.  So I have decided to bit the bullet and I've launched a (very scary) Kickstarter campaign.

I need to fundraise the money to get the book published which includes the costs of our fabulous illustrator to bring it to life (once again I will use Helen Braid, she has designed my blog header and my first book cover, she knows my story, she will make the words come to life with her pictures!), books also need publicity and distribution, none of this is free so I have a pretty hefty stretch target to hit!

Already within 24 hours of launching the kickstarter I have raised 8% of the targeted £5K, but I need to keep the momentum going.  I am looking for the big investors, maybe a small company who would like to sponsor some of the book in return for publicity?  An individual who would like to pledge £500 and in return have their child illustrated in the book?  Maybe a philanthropist who would be willing to donate £750 for a training course for their local special school?

Please take a look at the kickstarter page and please share, share, share it.  Even if you only pledge £10 I will send you a signed copy of the book.  Please help Daisy's legacy live on and help other children who are grieving the loss of a special school friend.

Please feel free to contact me on the blog contact form if you want to chat further about ways you could help.

When Life Gives You Lemons : Janine Osborne

I have known Janine (aka: Jin, Mrs Bowring, JOB) since the day after she was born!  

My family lived next to her parents in Wales and when her mum brought baby Janine home from the hospital I was one of the first to have a cwtch.  Janine and her sisters Hannah and Caroline are like little cousins to me and while not officially family are definitely part of my welsh family.

Janine's life has had it's ups and downs and I was so happy for her when she met the love of her life, Matt. Diagnosed with a really serious disease that nearly cost her life, Janine fought back, determined not to let it beat her just as her life was going so well.  Beat it she did and while still having regular chemotherapy treatment to keep the symptoms of her rare disease at bay she dedicates her time to helping other people battle through illness while also raising funds and awareness for many charities.  

Only Janine could spend her honeymoon climbing mountains in her wedding dress, such is her determination that her illness will not rob her of the the best years of her life/

Janine on her wedding day, a few days later she was climbing mountains wearing the same dress!