Belfast City Hospital to the Children’s Hospice

I love this photo of Leah.

Sometimes when I look back over everything that I’ve written in this blog about the care that Leah and I received during her illness, I worry that I haven’t said enough about all of the good care that we experienced.

I worry especially that I haven’t said enough regarding the many excellent staff that looked after us in Belfast City Hospital.

There are a few possible reasons for this:

Our first impressions of the City Hospital were very negative and I think that this in some ways coloured my subsequent perceptions.

Secondly, I always struggled with what I considered to be the lack of age appropriate care in an age appropriate environment in Belfast, for our fifteen year old daughter.

Thirdly, my emotions were in tatters during the two and a half weeks that Leah was dying in ICU in the City Hospital and that obviously coloured the lens through which I interpreted everything.

When Leah was in Bristol Children’s Hospital and developed complications post transplant, she was prescribed pain relief in the form of  tramadol and oramorph – a derivative of morphine. I was slightly alarmed at this and had visions of my daughter becoming a junkie!

The doctor reassured me however and explained that a bone marrow transplant had very severe effects on the body and initially all of her pain receptors would be in a state of heightened awareness, so that any pain that she experienced would feel quite severe and needed to be treated as such.

This actually made sense to me. I noticed that Leah had also become quite “sound sensitive” and couldn’t cope with any noise – even a dripping tap drove her crazy.

Well, whenever Leah was dying in ICU, I reflected back on this and compared it to how I was now feeling emotionally.

I felt as if all of my emotional pain receptors were in a state of heightened awareness.

During Leah’s final weeks, there were three things that I desperately wanted from the hospital staff:

1) To be allowed to remain at my ill daughter’s bedside continuously.
2) To be kept fully informed of her medical condition and their treatment decisions.
3) For any staff that came in contact with me to show kindness and an awareness of my needs as Leah’s Mummy.

When what was happening to me did not meet the above criteria, my emotional pain transmitters started firing and at times this felt unbearably painful.

However, when all of the above criteria were being met, I felt calmer and I found it much easier to cope.

I have to say, that most of the staff were very kind.

Those that got it right for us got it very right.

We had got off to a shaky start (at the time of diagnosis) with our haematology consultant, but Leah & I quickly put that behind us when we discovered how kind and caring he really was and is.

Our TYA (Teenage and Young Adult ) Cancer Nurse Specialist and our Clic Sargent Social Worker were there for us every step of the way and they were an enormous source of support to both of us. I don’t know how we would ever have managed without the two of them.

Most of the nurses were incredibly kind and caring, I wish that I could name them all and thank them individually.

There was two women who regularly cleaned the hospital during the night. They always had a smile and a kind word for me – they will never know how much this helped.

Sometimes, when a doctor wanted to talk to me, I was taken into the ICU office and two or three other members of staff piled in and watched while the doctor was talking to me. I detested this audience.

I was never told good news, so here I was, being told things about my daughter’s medical condition and life expectancy, that no parent ever wants to hear, struggling to maintain my dignity, while all of these pairs of eyes were fixed on me.

I would like to have been asked who I wanted to accompany me to meet with the doctor. I would most likely have chosen my TYA cancer nurse specialist, if she was available.

On another occasion, one of our favourite consultants was on duty, a young man who never failed to treat Leah and I with respect and compassion. When he wanted to speak to me, he “smuggled” me out of ICU and down a corridor and through another unit and into what looked like a store cupboard, far away from inquisitive eyes.

There, he gently, falteringly, explained to me that he really didn’t think that Leah was going to survive. Oh how I appreciated the respect that this doctor showed to me and his compassion. No, I didn’t want to hear what he was telling me, but it was so much easier to hear, when the information was delivered in a context that showed an understanding of my needs.

The day that Leah was being admitted to ICU it was the lovely consultant from Cork who assessed her, admitted her to ICU, then broke the news to me that my daughter was possibly going to die.

On Wednesday morning 15th January ’14 when we were in an end of life situation and Leah’s medical condition was rapidly deteriorating, the consultant from Cork, who always treated Leah and I with such dignity and respect, was mercifully once again on duty.

This incredibly compassionate man uttered the words that I will never forget “I’m off tomorrow morning – I will use this time to transfer your daughter to the N.I. Children’s Hospice.”

48hrs prior to this I had been told that under no circumstances could our daughter be transferred to the Children’s Hospice for her end of life care, as she was on a ventilator and too ill to be moved. I had found this very distressing as, if our daughter was going to die, we did not want her to die in critical care or even in an acute hospital setting.

When I was pregnant I was encouraged to write a “birth plan“. www.nhs.co.uk states “Use your birth plan as an opportunity to explain the things that really matter to you. However, remember to be flexible and recognise that things don’t always go to plan.”

Well, when Leah was dying I wanted a “death plan” – it was going to be my last act of love for my dying child. Of course, the “politically correct” term for this is an “end of life care plan”.

We have a large extended family who all needed the opportunity to say goodbye to Leah and she herself just loved big family get-togethers. No ICU anywhere could possibly have accommodated all of us. Least of all the ICU in Belfast City Hospital which does not even have a ‘relatives room‘ on site.

The Children’s Hospice was the only place that could accommodate our family’s needs and provide the type of end of life care that I wanted for Leah.

No, I didn’t want our daughter to die, of course I didn’t, but I thank God for all of the kindnesses that we experienced through it all, for the many people who touched our hearts along the way.

Leah was looked after by eight different consultants during her time in ICU, they all provided excellent medical care. They all cared about my daughter and they did everything humanly possible to save her life.

However, for me it was very special that the same kind, caring consultant from Cork (my hometown) who took Leah into ICU on the 27th December 2013, was the very same consultant who took her out of it and brought her to the N.I. Children’s Hospice on the 16th January 2014.

Memories

Yesterday I was savouring the memories of the 26th December 2013 – the last day that Leah’s laughter rang out in our house.

Today I have a very different prevailing memory of this time last year.

It is of our normally cheerful haematology consultant looking ashen faced and distressed.

It is of standing beside our consultant in the Bridgewater Suite and gazing in shocked silence at the CT images of Leah’s lungs on a computer screen. Leah didn’t even seem particularly unwell at this stage.

It is of lying on a camp bed in Leah’s room in the Cancer Centre that night, feeling too scared to go to sleep.

I’ve always been a good sleeper and no matter how ill Leah was before this, I slept well, only waking when she needed me.

I knew that we were in uncharted territory.

One of the reasons I was too scared to sleep in the Cancer Centre that night was because I could hear Leah’s breathing deteriorating.

Another reason was because the ward that we were on was not staffed to cater for patients as ill as Leah was quickly becoming. There was only two staff on duty that night.

We were in a single room and Leah was either being barrier nursed or reverse barrier nursed – I can’t remember which. Either way, the staff had to wear aprons and gloves coming into the room. This meant that the staff couldn’t just “pop in” to see if we were okay, when they were passing by.

I hadn’t had a tour of the ward so I didn’t know where anything was. Therefore I had to press the buzzer to get a vomit bowl. By the time a member of staff was free to bring it, Leah had vomited on the floor and the nurse expressed her annoyance, as this added even further to her workload.

To be fair, the staff were very vigilant in monitoring Leah’s medical condition during the night and they sent for the doctor on call on three different occasions as Leah’s condition deteriorated.

The next morning the staff were still insisting that Leah took all her meds orally – including her anti-sickness meds – and I was very concerned about this as she was vomiting them back up. I asked the nurse to get her written up for intravenous meds instead. The nurse explained that they didn’t stock all the meds that Leah needed in intravenous form on that ward and did I not understand how important it was to get Leah to take all her medication? I tried to explain that it was BECAUSE I knew how important her medication was, that I wanted it given intravenously through her Hickman central line.

Then when Leah became too ill to walk to the toilet, a nurse and a physio came to get her out to the commode. They looked surprised when Leah clutched her back in pain. I pointed out that she had a fractured spine between T6 & T8 and they were shocked – they didn’t seem aware of this fact.

In the early afternoon I left my daughter in the care of her lovely boyfriend, while I escaped briefly to a nearby coffee shop with a friend for some breathing space.

This is NOT representative of the care in the Cancer Centre, as we have had other VERY positive experiences there, as have had many other people. It was just an unfortunate series of events whereby Leah rapidly became too ill for the environment in which she was being nursed and that was no one person’s fault. Click here to read about Leah’s first admission to the Cancer Centre, this was a very positive experience.

Twenty hours after being admitted to the Cancer Centre, Leah was rushed to the ICU, where all her nursing and medical needs were met, to a very high standard.

As Leah’s mother, I never wanted to leave her side. I always wanted to be there to comfort her, to reassure her and to ensure, that day or night, her nursing and medical needs were attended to in the best possible way.

My constant presence in ICU at Belfast City Hospital was certainly a new experience for ICU staff. It was unusual to see other relatives there outside the strict visiting hours.

Initially I was repeatedly asked when I was going home. My answer never varied. When pressed, I told them that as long as my daughter was ill, the only way that they would get rid of me would be to call hospital security or the police!

There was no facilities, no relatives room, nothing. I hated having to leave ICU to use the public toilets in the main hospital foyer – I always worried that I would carry some kind of an infection back in with me.

In general the staff in ICU were very kind to me and did their best to make our stay a pleasant one.

I also valued the support that we received from our TYA Cancer Nurse Specialist, our Clic Sargent Social Worker, our N.I. Cancer Fund for Children Support Worker and the hospital chaplains. Click here for more information on the teenage and young adult (TYA) support services at Belfast City Hospital.

Family and friends constantly supported us too.

It was nevertheless the hardest two and a half weeks of my entire life.

Through it all, every day, Leah’s favourite Christian songs played in her room on her iPad – or on mine when hers was charging. Their words ministered to us. The staff often commented on the lovely songs.

Here is one that I particularly associate with that time:

CORNERSTONE by Hillsongs

When Darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil
My anchor holds within the veil

Christ alone; cornerstone
Weak made strong; in the Saviour’s love
Through the storm, He is Lord
Lord of all
He is Lord
Lord of all

From Bristol to Belfast

On Sunday 27th October Leah and I finally escaped from Bristol and returned to Ireland. We had spent 14 weeks in Bristol, much longer than the 6-8 weeks that we had originally anticipated.

Horace flew over on the Friday night in order to accompany us on the flight home, as Leah was weak and unwell.

The seasons had changed – we had left Ireland during an amazing heatwave and we were now returning in the frosty darkness of winter.

We had changed too, we had arrived in Bristol on a warm July Sunday, full of hope and optimism, with just a little bit of fear.

However, now our hearts – and Leah’s body – were battered and worn.

Years ago I used to watch every episode of “Children’s Hospital” on TV but eventually I had to stop, as it all became too much for me emotionally.

Living on the wards of Bristol Children’s Hospital with Leah, felt at times like being stuck in a never ending episode of “Children’s Hospital“, from which there was no escape.

So many sick children.

So many sad stories.

So many broken hearted parents putting on brave faces.

Our final fortnight in Bristol proved to be a nail biting finish.

Leah’s blood platelets  were consistently dropping and her consultant was worried that she was relapsing and would need a second bone marrow transplant.

Thankfully a bone marrow biopsy  on the 16th October revealed healthy bone marrow.

The doctor said that she might need a CD34 selection top up  at some later stage, if her blood counts didn’t come up, but we didn’t need to worry about that yet.

Leah was discharged from hospital back to Sams House, our Clic Sargent  accommodation.

We were told that at long last we could plan our return flights home.

Then, on Monday 21st October, just as we were booking our flights home, Leah developed a “line related” blood clot and was once again readmitted to Cubicle 4, the hospital room that we so disliked, on the Bone Marrow Transplant Unit.

The prominent veins were the clue that something was amiss.

Leah required a blood platelet transfusion at this stage as her platelets had dropped to 47 and a normal platelet count is above 150.

The doctor on duty could offer no reassurance that we would still be going home the following Sunday as planned.

I remember feeling stunned and numb and thinking “This just can’t be happening.”

The staff on the Transplant Unit seemed as shocked and upset about our circumstances as we were.

Webster, one of the healthcare assistants, made me my favourite cheese on toast, as I hadn’t eaten all day. I don’t know what his secret ingredient is, but he makes the most amazing cheese on toast.

Leah browsed their menu and ordered something more substantial, but cheese on toast is one of my comfort foods.

The night nurse on duty wouldn’t hear tell of me walking to the Clic Sargent House in the dark to get our bags for staying overnight. She ordered a taxi to take me there and back.

I hugged Leah tight then reluctantly left her alone in her isolation room, while I once more went and packed our bags for a hospital stay.

The next day it was decided that Leah could be discharged from hospital on daily anticoagulant injections.

We could fly home at the weekend but we had to attend Oncology Day Beds every day for the rest of that week for monitoring of Leah’s medical condition.

It was a busy week.

Two days before we were due to fly, Leah developed chest pain.

She had to have an ECG, a chest X-ray and an emergency CT scan.

Everything hung in the balance.

Eventually Leah got clearance to fly home – such relief.

Leah had baked fifteens  for the Doctors and staff in Oncology Day Beds to say goodbye and thank you.

We got lots of warm hugs from the members of the team that we had grown especially close to.

I can tell you that two people were never as happy to see a “Welcome to Belfast” sign as Leah and I were on Sunday afternoon 27th October 2013.

I couldn’t stop crying – my emotions were all over the place!

Our eldest daughter was at the airport to welcome us.

Although I was desperate to get home and see everybody, I had some very mixed emotions.

I was acutely aware of just how unwell my daughter was.

I was excited about returning to Ireland and being reunited with friends and family, but I was nervous about leaving the care of Bristol Children’s Hospital.

In Bristol we were surrounded by families who were walking a similar journey to us and we could support one another.

Back home Leah was cared for in adult services so I had no contact whatsoever with other parents or families and therefore no informal means of peer support.

I couldn’t remember what normality felt like, nothing in life seemed familiar anymore, I was scared.

Leah couldn’t return to the house that we used to live in due to dampness and mould. Our new house wasn’t ready yet.

Leah’s Auntie E lives in Belfast and very kindly invited Leah and I to stay with her for a fortnight.

This seemed like a very good idea as it also meant that we were adjacent to Belfast City Hospital, where Leah’s post transplant recovery would be monitored.

Once we returned to our own home we would be 70 miles from the hospital.

Leah’s diagnosis of myelodysplasia with monosomy 7 was very rare.

Her particular variant of a Gata2 gene mutation was even rarer.

Bristol Children’s Hospital was where all of this was well understood.

I had developed such trust and respect for the staff in Bristol, I didn’t know if I could ever learn to trust the staff of another hospital in the same way.

Leah was being cared for in Children’s Services in Bristol.

Back home in N. Ireland she received her care in Adult’s Services and that felt very different.

We had our first return appointment at the Bridgewater Suite  at Belfast City Hospital on Tuesday 29th October 2013.

Leah and I were both tearful and emotionally fragile.

We were used to the small intimate environment of the Paediatric Oncology Day Beds in Bristol, where everyone knew us and decorated cardboard cutouts of Gromit hung from the ceiling.

Where the smiling Play Therapist was on hand with interesting activities to distract and everything seemed geared to meet the needs of children, young people and their parents.

Bridgewater Suite in Belfast City Hospital on a Tuesday morning is crazy – there are patients waiting everywhere – it’s like a cattle mart.

Although the waiting area is extensive, it’s still not big enough, so some patients even sat on the window sills. We felt overwhelmed.

A single room was quickly found for us thankfully, as Leah wasn’t supposed to be mixing with crowds, due to her weakened immunity.

Our Clic Sargent SW and our TYA cancer nurse specialist  came to see us, we were glad to see them again.

Everyone who knew us was so warm and welcoming.

They couldn’t change the physical environment, but they did everything that they could do to support Leah emotionally and to make things better for both her and me.

Muriel, a Presbyterian deaconess  who provides chaplaincy at the hospital, changed her day off that week, so as to be there to meet us and pray with us. We appreciated that so very much.

Our consultant was really nice and very caring, as was the lovely nurse who accompanied him.

Over time, Leah was also allocated a Physiotherapist and an Occupational Therapist.

New relationships were formed and trust began to be established.

For the remainder of Leah’s short life, every Friday was spent at the Bridgewater Suite at Belfast City Hospital, where she received excellent care and attention.

During the two weeks that we stayed with Auntie E some fun times were had too.

We sat around her kitchen table and played Cluedo  and Uno.

I kept winning at Cluedo and they accused me of cheating!

I wasn’t cheating – the two of them were busy chatting while I was very focussed and concentrating on the game!

Leah was very close to her Auntie E and loved her company.

We usually got a taxi back to Auntie E’s house after our hospital appointments, this cost approximately £10.

On one of these occasions, when we arrived at our destination, the taxi driver switched off the meter and refused to accepted any money.

Leah’s chemotherapy hair loss had given him a clue to her illness and he had learned a bit more of her story as we chatted along the way.

To be honest, the kindness shown to us by this total stranger cheered and encouraged our hearts way over and above the monetary value of the £10 that we saved, although we appreciated that too.

At weekends Leah’s boyfriend Nic travelled up by train to visit her.

When he was leaving we always walked with him to the train station, then Leah and I walked back together.

Leah was weak and couldn’t walk far.

The shortest way back was via an unlit, lonely, isolated path.

My mobile phone was fairly new and I didn’t realise that there was a torch on it.

Leah and I used to walk this path together, arms linked, in total darkness, surrounded by bushes on either side.

I used to be terrified, but tried not to show it.

I silently wondered if anyone would hear us if we’d screamed.

Sometimes the bushes would rustle and I would startle and Leah would say “Mummy don’t you tense up, because you’re making me scared.”

So then I would have to consciously relax my body, and control my breathing, to keep Leah from sensing my fear.

I was always so relieved when we reached the end of this lonely path and I could see the welcoming street lights.

In many ways our walk on this path was a metaphor for this whole illness journey that Leah and I walked so closely together.

I had to rely on God for the strength that enabled me to control my fears and emotions. It was vitally important that I remained calm and unruffled on the outside, so that my daughter didn’t sense the fears that I carried deep down inside, regarding her illness and its implications.