Grieving For A Sister

Grieving For A Sister

CHRISTMAS 2012 Leah and Miriam in their new onesies.
December 2012 Leah and Miriam in their new onesies.

Last night Miriam was upset about a school playground incident. I listened to her and hugged her as she cried.

Then I went to my room and I cried too – upset that my little girl has been left like an only child, with only her mum and dad to turn to much of the time.

From Leah's Facebook page
From Leah’s Facebook page. The caption underneath reads “I do love my little sister.”

Up until September 2012 Miriam had two older sisters living at home. The three girls had each other to discuss their woes with. Oftentimes I heard things second hand rather than first hand.

Leah was the primary dispenser of hugs. From a young age, Leah’s emotional barometer was very sensitive, she usually knew if anyone was upset and she offered them comfort. Even while still of Primary School age, Leah could sense if I had a difficult day at work and she would offer me a hug.

I remember one day when Leah was very young, maybe 6 or 7 years old, I was very grumpy and got very annoyed with her regarding some childhood misdemeanour. She fled to her room in tears. When I had calmed down, I went to her room to speak to her and she looked at me with her big brown eyes, like a wounded puppy, and exclaimed “Mummy, you’ve hurt my feelings.” I didn’t know what to say.

I remember another time when Leah was 5 years old and I was very worried about a family situation, but trying not to show it. I remained calm on the outside (or so I thought) and I was very careful about what I said in front of the children. Leah’s big brown eyes looked up at me as she asked “Mummy, is this the worst day of your life?” I was speechless.

I know what it feels like not to have sisters living at home to share secrets with. By the time I was Miriam’s age, all four of my siblings had left home. I hated feeling like an only child, with only my parents for company, kind and caring though they were.

Similar to Miriam, I was a ‘wee late one‘, except that it was Cork City not Northern Ireland, so Mum used to tell people that I was “an afterthought – her baby“.

At home she called me “a chuisle, mo chroí” which is Gaelic for “the pulse of my heart“, or else she called me “Vicky, a leanbh” which is pronounced “Vicky Alanna” and means “Vicky, my child” – a term of endearment.

This is how Leah came to be named Leah Alanna.

As Miriam sobbed her heart out last night, it occurred to me that her tears were probably not only regarding the incident in question – the usual stuff of pre-teen girls – but her tears were also expressing the loss of a sister who had always been a source of comfort.

Miriam and Leah were very close. Miriam accompanied us to Bristol for Leah’s first Outpatient’s Appointment.

Miriam accompanied Leah and I again when we flew over for Leah to be admitted for her Bone Marrow Transplant.

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Aldergrove Airport 21st July 2013

Miriam came right to the door of the Transplant Unit, beyond which no children are allowed, unless they are patients. The Transplant Unit swallowed Leah and I up, whilst Hospital staff cared for Miriam until our childcare arrangements kicked into place.

Once Leah was back out of the Transplant Unit, five weeks later, Miriam was over twice to visit us with her Daddy. Leah loved when family came to visit.

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Bristol 28th AUGUST 2013

During the 6.5 weeks that Leah had at home before her final hospital admission, if Miriam wasn’t at school, she barely let Leah out of her sight. She used to get off the school bus, get changed and go straight down to Leah’s bedroom. There she stayed until bedtime.

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Leah ready to attend Nic’s formal on the 21st November ’13

On one occasion, for a very special treat, she was allowed to sleepover in Leah’s bedroom with her.

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This was the last ever photo taken of Leah and Miriam together – 20th December 2013

When Leah was critically ill in ICU, she was desperate for Miriam to be allowed in to visit her, but the rules of ICU were “No Children Allowed“.

I tried to explain this to Leah, who was on a ventilator and communicated by typing on her iPad, but she insisted that I could just bring Miriam on in without permission, because she didn’t look like a young child. This was Leah’s reply to me on the matter:

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I asked the staff about bringing Miriam in to visit Leah, but they were concerned that it would be distressing for Miriam to see her sister so ill and said that she needed to be helped to prepare for this. A Family Worker from the local Hospice was sent out to our house to start this work.

Of course, while all of this was happening, Leah’s condition was gradually deteriorating and both time and opportunity were lost.

Eventually, at 1am on Thursday morning the 16th January 2014, Horace drove to Belfast City Hospital with Miriam and Simon. I sat in the car and explained things to them. Then the two of them accompanied me into the ICU to say their goodbyes to their much loved sister, who was now deeply unconscious and hooked up to countless machines.

It was one of the saddest moments of my life.

One of the many challenges for a bereaved parent, is trying to support our grieving children, when oftentimes we feel barely able to support ourselves.

Walking Taylor Home

Walking Taylor Home

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I’ve just finished reading the book Walking Taylor Home. It’s the type of book that I would have devoured in a few days, before Leah’s illness and death took it’s toll on me.

Now it’s taken me a few weeks to read, due to a combination of poor concentration and me needing to stop regularly to cry and give myself an emotional break.

It is however a very heartwarming true story and I feel the richer for having read it.

There are some parallels to our own journey and many differences.

Bone Marrow Transplant Unit, Bristol, July 2013
Leah in the Bone Marrow Transplant Unit, Bristol, July 2013

Brian, the author, is the dad of a pre-teen son Taylor who was diagnosed with cancer. Brian chronicles their journey via detailed, heart wrenching but also witty, email updates that he sends out to praying friends. These later become the basis for this book.

Initially Taylor has chemotherapy and surgery and everything is looking good. However his cancer soon returns with a vengeance. Difficult conversations have to be had and tough decisions have to be made.

Eventually Brian has to have the conversation that no parent ever wants to have with their child – the one where you prepare them for the possibility of their own death.

Last week I had coffee with the doctor who, on the 28th December ’13 admitted Leah to ICU in Belfast City Hospital and then took me into a room to tell me that my daughter was possibly going to die.

Less than 36 hours previous to this I had a daughter who was very excited about going to her first big family party since her bone marrow transplant. Suddenly she and I were faced with discussing the possibility of her death.

At home on the 20th December 2013
At home on the 20th December 2013

I had never rehearsed this moment, I had no preplanned script. I had always thought that there would be more time.

If living with cancer feels like being on a roller coaster, Leah’s bone marrow transplant felt, at times, like one very nasty game of snakes and ladders.

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The transplant process itself was like climbing a very steep ladder. Then, at the end of August ’13 Leah progressed to being transferred out of the transplant unit in Bristol Children’s Hospital to their beautiful state of the art, purpose built Adolescent Unit. All of Leah’s blood results were going in the right direction. We were ecstatic. We thought we only had to roll a six and we would be home.

However the next roll of the dice landed us on the nasty snake of graft vs host disease.

Steroids along with some other meds (MMF & methotrexate) brought her GVHD under control, so we climbed another ladder – eager to roll the numbers that would take us home. Instead we rolled again and landed on another snake – Leah developed haemorrhagic cystitis caused by BK polyoma virus and was back in the transplant unit.

This snake was particularly venomous, but eventually we got out of hospital and were told that we could book our flights back home to Ireland. Within days, the next roll of the dice caused us to once again step on a snake, resulting in yet another readmission to the transplant unit.

Oh how I hated this cosmic game of snakes and ladders. Thankfully soon after that we did make it back to Ireland. We got approximately six weeks at home before the final roll of the dice landed us on the biggest and most venomous snake to date – pneumonitis or idiopathic pneumonia syndrome.

I wanted to be emotionally available to my daughter in ICU and I needed to stay strong at all times, so I couldn’t allow myself to process the emotions produced by any of this while it was all still happening.

I was really looking forward to meeting up with this doctor last week, as he showed us so much kindness and compassion during our two and a half week stay in ICU. I enjoyed my rendezvous with him and we had a good chat.

However, meeting up with this lovely doctor also reconnected me with the shock that I had experienced, but suppressed, when the 36 hours between Friday morning and Saturday evening, brought about the dramatic transition from happily discussing the impending family party with Leah, to sadly discussing the possibility of her impending death.

This triggered a huge wave of grief last weekend.

I don’t however have any regrets about meeting up with this doctor. I’m very grateful to the members of staff who cared for Leah and who have since made time to meet me for coffee. This helps me to process my thoughts and contributes towards my healing.

In the book “Walking Taylor Home” Brian does not shy away from the difficult spiritual questions such as the issue of “healing”.

At all times he allows that God can and does heal, but asserts that God is not like the genie in the lamp, dishing out healing based on enough people rubbing the lamp in the right way.

Brian is very honest about his spiritual struggles as the parent of a dying child. There was so much that I could relate to, even though I had to take regular emotional breaks.

For me it wasn’t a depressing book. It was dreadfully sad yes, but Taylor’s beautiful personality and the incredible bond between father and child was so touching.

I suppose that what I liked and what comforted me – through my tears – was that Brian, like me, recognised that part of being a parent was to lovingly prepare his child for death and then let him go, into the waiting arms of a loving Heavenly Father.

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Belfast City Hospital to the Children’s Hospice

Belfast City Hospital to the Children’s Hospice

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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.

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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.

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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.

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Peace Restored

Peace Restored

In the early hours of Thursday morning the 16th January 2014, I left Leah’s room in ICU and walked back through the winding hospital corridors, to my room in the Cancer Centre, for one last time.

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I knew exactly what lay ahead for us as a family that day.

My entire body felt like lead. Walking along those corridors felt like trying to propel my limbs through deep water.

Leah had been on a ventilator for two weeks and she had been unconscious for the past four days.

I was already missing her terribly. When she was awake on the ventilator, she had found creative ways to communicate.

All of the tests had confirmed that Leah’s body was now “broken beyond repair”.

Leah’s CT scan images had been scrutinised by the top experts in both Belfast City Hospital and Bristol Children’s Hospital.

Two of the consultants in Belfast had sat surfing the internet until midnight, searching for any potential remedy that hadn’t already been tried.

Hundreds of churches and thousands of people, all over the world, had been praying.

Nevertheless, it was now abundantly clear, that Leah’s story was only going to have one ending.

At 8.30am that morning, an emergency ambulance was booked to transfer Leah and myself, along with three ICU staff, to the N.I. Children’s Hospice, where all of our loved ones would be waiting.

There Leah’s life support would be withdrawn and we would say our final goodbyes.

I packed my bags and sat on my bed.

I felt numb, empty, desolate.

I lifted my iPad and clicked on Facebook.

There I discovered that Leah’s friend Matthew had put together a beautiful YouTube video, of various photos of  Leah taken over the past year, interspersed with inspirational messages and backed with the song “It is well” by Hillsong.

I could scarcely breathe as I watched and listened:

“But Lord it’s for Thee
For Thy coming we wait
The sky not the grave is our goal
Oh trump of the angel!
Oh voice of the Lord!
Blessed hope
Blessed rest of my soul!

It is well with my soul
It is well
It is well with my soul

You are the Rock
On which I stand
By Your grace it is well
My hope is sure
In Christ my savior
It is well with my soul”

A peace flooded through me.

I knew without a shadow of a doubt, that it was well with my daughter’s soul.

I slept for a few hours then.

In the morning I left that room for the last time.

Normally the staff on that ward in the Cancer Centre were friendly and welcoming to me, but they must have been very busy, for as I slipped in and out that morning, nobody spoke to me or seemed to notice me.

I felt alone and invisible.

At 7.20am as I stepped into an empty lift to head down to ICU, feeling very alone and vulnerable, I heard a text coming in on my phone.

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It was a work colleague from a previous job – her act of kindness in texting me at that exact moment was precisely what I needed.

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The remainder of that day is described in my blog post How Could We Ever Have Let Her Die In An Unplanned Kind Of A Way

This is the YouTube video that I watched that night:

 

God is Bigger than the Boogie Man

God is Bigger than the Boogie Man

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These were taken CHRISTMAS 2011. Sadly I don't seem to have taken ANY photos CHRISTMAS 2012 - between me having the flu and the cat killing the hamster, it was all a bit stressful.
These were taken CHRISTMAS 2011. Sadly I don’t seem to have ANY photos taken CHRISTMAS 2012 – between me having the flu and the cat killing the hamster, it was all a bit stressful.

One of the many differences since Leah died is the quietness.

The house feels quiet, the car feels quiet and we are quiet, often lost in our thoughts and in our memories.

In September 2012, Rachel, the eldest of our four children, left home to go to university.

Then in November 2012 I started a new job.

December 2012 Leah had her first blood test.

In July 2013 Leah and I went to Bristol Children’s Hospital and we were away from home for 16 weeks.

December 2013 Leah was admitted to ICU and in January 2014 she died.

It feels as if just yesterday we had a noisy house and car full of children, but today there is just quietness.

Leah was the only one of our four children who ALWAYS played her music too loud and this used to drive me crazy.

In the car she used headphones, but even then she had her music turned up so loud that it still irritated me. I lectured her endlessly about the potential damage to her hearing.

Sometimes I would play my music through the car stereo to drown out what leaked from her earphones. Then she would turn hers up even louder, as she said that my music was drowning hers – parents of teenagers, you know how it is!

Now it all just seems too quiet.

Was it really so long ago that I was driving our 7 seater car with our kids and their cousins jumping about and belting out the Veggietales song “God is bigger than the Boogie Man”?

Sometimes it feels like only yesterday.

Leah’s birthday in ICU

Leah’s birthday in ICU

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This was Leah with her Dad on her 16th birthday on the 31st December 2013.

There was no party, no cake, we didn’t even sing “Happy Birthday”.

Leah was exhausted from the effort of trying to breathe. She struggled to even keep her eyes open.

I kissed her and told her how precious she was and how much we all loved her. I said that we’d have a big party when she got home.

This is what I wrote on our Facebook blog @ 8am that morning:

“Leah’s oxygen levels & breathing remained stable over night. They are alternating 1hr of the face mask CPAP with 3hrs using the nasal prongs. Leah prefers the nasal prongs. We both got a few hours sleep. Thanks for all your prayers & supportive messages. Visiting is of course restricted in ICU & many of you live far away but modern technology brings your loving support directly into Leah’s room.”

Lots of people sent birthday wishes by text, facebook, card or email. All of these were read out to Leah.

On Thursday 2nd January ’14 Leah went on a ventilator. By Friday this had helped her body so much that she was awake and keen to communicate.

Photography was strictly forbidden in ICU but like many young (and not so young) people, Leah loved taking selfies.

On the morning of the 3rd January, when Leah was using her iPad, she pulled my head down beside hers and ‘click’ – there it was, we’d broken one of the rules of ICU.

It was usually quite difficult for Leah to type, as the medication that she was on blurred her vision.

Not on this occasion – Leah uploaded the photo to Facebook and typed out:
Didn’t exactly plan my sweet 16 birthday or the New Year to be like this but thanks to everyone whose been praying. I love you mummy ❤ 🙂

Such precious beautiful words.

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Memories

Memories

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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