Leah and Timothy

Leah and Timothy

Timothy Jan 2013

While browsing through photographs earlier I came across this photograph. It gripped me with it’s simplicity. It was Leah with her little cousin Timothy who she absolutely adored.

My iPad tells me that this photograph was taken at 11.20am on the 2nd January 2013. Leah took the photo but I can remember very clearly the events of that day and exactly what I was doing around that time.

I was taking a phone-call from our GP who had been contacted by the haematologist at our local hospital regarding Leah’s blood tests, to say that there was a possibility that Leah may have leukaemia or something similar. The doctor wanted me to bring Leah to the He20130102_115913alth Centre straight away.

I informed the doctor that Leah had just left to have lunch in Limavady with her sister and her cousins, as a treat for her fifteenth birthday which had been a couple of day’s previous. I said that I didn’t want to spoil their fun and I would bring her down as soon as they got back.


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The GP said that the haematologist dealing with this was going on holidays to the South of Ireland at 6pm and he was very keen to run a range of blood tests on Leah with a view to making a diagnosis, before he left for his holidays. I insisted that I wasn’t willing to interrupt this special time that Leah was having, but that I would have her at the Health Centre by early afternoon.

Writing all of this in the cold light of day, knowing as much about blood cancers as I know now, my response sounds ridiculous. However, at that stage it seemed preposterous to me that there could possibly be something seriously wrong with one of my children. I wasn’t going to spoil a special birthday treat just so that somebody could draw more blood from her.
2012-05-13 20.48.52In retrospect I have no regrets either – although I would NOT advise anyone else to adopt such a cavalier attitude – time is indeed of the essence with some leukaemias. Leah loved her little cousin Timothy so much. Six months previous to this, Leah had spent a week in Donegal with Timothy and his mum Paula. Afterwards she had written in her diary “I stayed this week in Donegal with Timothy and I love him more than ever.” 

Leah talked about Timothy frequently when we were in Bristol and she couldn’t wait until she 20130127_132426would get to see him again. There was only one problem though, young children are often unwell and the kind of viruses that they contract are the ones that posed the greatest risk to Leah in her severely immunocompromised state. Our consultant regularly warned her “One chance encounter with a snotty nosed kid could kill you, you know.”

When we returned from Bristol, Leah was desperate to see her beloved Timothy. Unfortunately, like many young children in winter, he was prone to having a runny nose. It wasn’t one that cleared up in a hurry either. As Christmas approached, Leah pleaded with her haematology consultant to be allowed to attend the family get togethers that we always have at that time of year and especially to be allowed contact with Timothy, who unfortunately still had a runny nose, but was otherwise very well.

Our consultant, who had been lecturing her about the importance of re-establishing some normality in her life, responded to this request by asking “Do you HAVE to go to these family get togethers?” to which I replied “Yes, actually, we do!” It had now been six months since Leah had seen many of her extended family and she craved this contact.The consultant replied that Leah could go to the get-togethers and see Timothy, on the condition that she didn’t hug him, kiss him or have any face to face contact. We agreed to this.

A little while later another medical professional came into Leah’s room on the Bridgewater Suite to carry out a procedure and her first words to Leah were “I believe that you’re going to have contact with a child with a runny nose?” I didn’t say anything, but it really irritated me, because on the one hand they were telling Leah that she was getting better and that she needed to start normalising her life, yet on the other hand, when all we wanted to do was to spend a little time over Christmas with some of the people whom we loved most in all the world, we were being made to feel like criminals.

Leah didn’t appear to let it bother her and she looked forward with great excitement to the first family get-together on Friday night the 27th December 2013.

We had a routine outpatients appointment in Belfast to attend earlier that day first. Leah became very unwell in the car on the seventy mile journey to the hospital but she tried to get me to promise not to tell anyone that she was sick – so desperate was she to get home for that big family get-together that she had waited so long for.

As each medical professional came and did what they had to do, Leah sat and smiled at them. They never suspected a thing – none of the nurses even noticed what I had noticed – that Leah was breathing at a rate of FORTY respirations per minute – research suggests that an adult with a resting respiratory rate of over 24 breaths/minute is likely to be critically ill.

The last person to visit, after we had been at the hospital for half a day, was our consultant. I drew his attention to Leah’s rapid respirations and he sent us WALKING from the Bridgewater Suite in the City Hospital to the adjoining Cancer Centre for a chest X Ray. Leah was so breathless that I wasn’t sure if she was going to make it. I had to help her dress and undress for the X ray as she couldn’t manage it on her own, she needed all of her energy just to breathe.

When the consultant saw the results of Leah’s chest X ray he was embarrassed that he had sent her walking to the X Ray department in the Cancer Centre and he apologised to us. Admittedly, Leah had tried very hard not to look ill and she had been very successful. Leah was initially admitted to a single room in the Cancer Centre, but within 24hrs she was in ICU and the doctor was telling me that she may not survive.

Leah was so disappointed at not getting to the family party, but she didn’t make a big issue out of it. That is why, at the end of Leah’s life, even though she was unconscious, it was so important to get to the Children’s Hospice so that most of her family and very close friends could be with her.

I wanted to give Leah what she had so desperately wanted – that one last big family get together.

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:

 

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

Surviving Christmas

Surviving Christmas

Christmas – the time of year that most bereaved people dread. With its emphasis on family life, traditions and togetherness, the bereaved feel the loss of their loved one more keenly than ever and the empty chair is at it’s most conspicuous. For those whose loved one became ill and/or died around Christmas – well, it’s even harder.

Christmas has been evident in the shops for quite a while now but it was partly camouflaged by the Halloween stuff. Now that Halloween is over, there is no holding back – the commercialised side of Christmas is in full swing.

I went into my local Chemist today to collect a prescription and was confronted by all their Christmas stock – the tears started to sting my eyes. Leah loved Christmas, she would have loved looking through all the gift sets on display, selecting gifts for friends and family.

I was unfortunately a captive audience in the Chemist today, due to having to wait for the prescription. My emotional distress started to escalate.

The sales assistant was pleasant and friendly. She suggested that myself and another customer try out some perfume samples while we were waiting. This was just too much for me, Leah loved perfume.

There was a delay on the prescription so I excused myself and headed for the privacy of my car, pulling up my hood as I walked, to shield my tear stained face from passers by.

Last Christmas the Northern Ireland Cancer Fund for Children gave us tickets for our whole family to go and see Peter Pan in the Millennium Forum in Derry.

We had to get special permission from Leah’s consultant for her to be allowed to attend, thankfully he said yes. Now that the children are older (aged 10 – 19yrs at that time) it was relatively unusual for all six of us to do something together away from the house.

Miriam, our 10 year old, was particularly excited. On the way there she said “Mummy, is this the way it’s going to be from now on? Are the six of us going to be doing more things together as a family?” I replied happily “Yes, that’s right.”

During our 14 weeks in Bristol, Leah and I had missed our family so much, that family togetherness was now even more precious than it had already been. That pantomime turned out to be the last thing that the six of us went to together.

We arrived a bit early because my husband dropped us at the door and then went off to park the car. This explains the empty seats and the preoccupation with mobile phones!!

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There were other families at the Pantomime also who were battling childhood cancer. During the interval I was chatting to another family, their wee boy was called Niall. He sadly lost his battle with the illness in April ’14.

I think it’s fantastic that charities like the Northern Ireland Cancer Fund for Children help families like us to make happy memories with our ill children, when things like pantomimes are the last things on our minds.

Two weeks before Christmas my sister-in-law asked if any of us wanted tickets for the community carol service in the Arts & Cultural Centre in Limavady on Monday 23rd December. I said no, thinking that Leah was too unwell to attend, but of course you couldn’t keep her down ( or in) – it turned out to be the last function that Leah ever attended.

Leah really enjoyed attending that Carol Service and I’m so glad that she went. Her sister brought her home but by the time they got to the house, Leah was crying with the pain from her spinal fracture. Earlier that month an X-ray of Leah’s thoracic spine had shown a small spontaneous infracture between T6 & T8. Leah was at times totally incapacitated by the levels of pain that she was experiencing. We were told that this level of pain could not be explained by such a tiny fracture.

On Friday 27th December Leah became very unwell and had an emergency CT scan of her lungs which resulted in her being admitted to the Cancer Centre at Belfast City Hospital. On Saturday morning 28th December Leah was crying with the pain in her back and the nurses and physiotherapist on the ward in the Cancer Centre expressed surprise when I informed them of her spinal fracture.

Leah’s breathing deteriorated on Saturday afternoon and she was transferred to ICU and became critically ill. The next day (Sunday) our haematologist informed me that the CT scan that Leah had done on the Friday showed that it wasn’t just a “small infracture” of the spine that Leah had but a “wedge compression fracture” between T6 & T8. This explained the degree of pain that she had been experiencing. I was devastated when he told me this, thinking about my beloved daughter and her broken body, thinking about how she had smiled and kept going through so much pain.

Leah’s pain was always well controlled in ICU.

Leah’s spontaneous spinal fracture is the one symptom that no one has never been able to adequately explain. She was a fit and healthy girl – other than her diagnosis – before her treatment started in July ’13. She was only on steroids for three months. Leah was already off steroids by the time she had the first X-ray that diagnosed the fracture initially in early December.

One of our consultants told me that if Leah had lived, she would likely have gone on to develop problems with her hips and knees as well. He said that she would possibly have faced a lifetime of hip and knee replacements.

So……….Christmas.

I’m terrified of when some “unknowing” person uses that Northern Irish phrase and says to me “Any word of Christmas with you?” I will just feel like bursting into tears, but if I’m at work I shall have to smile sweetly and respond appropriately.

Yet, I have to remember that the God who has got me this far isn’t about to abandon me now.

I have to remember that the many precious promises in God’s word are for the hard times, not just the easy times. Verses like:

2 Peter 1:3
His divine power has given us EVERYTHING we need for a godly life through our knowledge of Him who called us by His own glory and goodness.

Psalm 23:1
The Lord is my Shepherd I shall NOT want

Philippians 4:19 (KJV)
But my God shall supply ALL your need according to His riches in glory by Christ Jesus.

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Sometimes we have to just hold on by the tips of our fingernails.

This is a song that a good friend introduced me to recently – listening to it brings me a lot of comfort.

MY TROUBLED SOUL, why so weighed down?
You were not made to bear this heavy load
Cast all your burdens, upon the Lord
Jesus cares, He cares for you


Jesus cares, He cares for you
And all your worrying
Won’t help you make it through
Cast all your burdens upon the Lord
And trust again in the promise of His Love

Chorus
I will Praise the mighty name of Jesus
Praise the Lord, the lifter of my head
Praise the Rock of my Salvation
All my days are in His faithful hands

Meet Mr Wiggly

Meet Mr Wiggly

Early on Monday 1st July 2013 Leah was admitted to the Cancer Centre in Belfast City Hospital for a repeat bone marrow biopsy and to have a double lumen Hickman central line (Mr Wiggly) inserted.

It was Leah’s first admission to BCH and she had a spacious ensuite single room, with a folding camp bed for me. There was a steady stream of professionals in and out of her room and everyone was absolutely lovely. We were really well looked after.

 

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By early evening Leah was well recovered from her anaesthetic but still had enough pain relief in her to keep her comfortable.

Leah loved her food and was feeling peckish, although she’d had her tea. By the time I had organised myself to go looking for a shop, the hospital shop was closed, so I walked down the Lisburn Road until I found a wee corner shop that was open.

I had left Leah happily “snap chatting” her friends on her new iPad. I brought her back an ice cream, a fizzy drink, a bar of chocolate and a muffin.

Leah was delighted and probably amazed that her mother would voluntarily buy her so much rubbishy food. However, as a nurse myself, I was well aware of what the near future held for Leah in terms of chemotherapy and side effects and a “clean diet”.

I was just glad to be able to do something “normal” like walk to a corner shop and buy her treats.

 

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The next day the doctor told us that the initial tests on Leah’s bone marrow aspirate showed no significant increase in the number of abnormal cells. This was absolutely fantastic news as myelodysplasia has the potential to rapidly transform into an aggressive form of acute myeloid leukaemia.

He said that they would be sending samples from her bone marrow biopsy to Bristol for further testing. It was September before I discovered that these further tests in Bristol had showed sinister and worrying changes in Leah’s bone marrow.

At the time though, I didn’t ask and wasn’t told, for which I am grateful, sometimes there’s a limit to how much bad news anybody can cope with.

Leah was discharged from hospital late afternoon on the Tuesday, with a very sore neck.

On the Tuesday morning Leah met Muriel for the first time, she’s the Presbyterian deaconess who provides pastoral support at BCH. Leah and I loved her instantly. The pastoral support from the chaplaincy team at the City Hospital is excellent. When Leah was very ill in ICU in January ’14 we very much appreciated all the pastoral support that we received, Leah just loved to be prayed with.

For the next few days Leah found the whole area around the insertion site of her Hickman line very tender and painful and she needed lots of pain relief.

We had begun the path of the “new normal” – invasive procedures and medication and side effects and more medication to counteract the side effects and so on and so forth.

 

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Our local community in Eglinton/Greysteel/Limavady held a fundraising evening for Leah on Saturday 29th June ’13. This was organised, almost single handedly, by a local woman called Margaret Moore who is blind.

It was very well supported by our neighbours, friends, relatives, local clergy and political representatives. Local businesses were generous in their donations. Leah was presented with a generous cheque. We appreciated not only the money, but also everybody’s friendship and kindness.

Shortly before this, our church, Kilfennan Presbyterian, had organised a “Prayer and Pudding Evening” in support of Leah. Over a hundred people, young and old, came to show their support for Leah.

There was an opportunity for private and group prayer. Many left financial gifts. There was also pen and paper to write a message or a prayer for Leah and post it in a box. Our church family worker then collated all of these into a beautiful book of encouragement for Leah to take to Bristol with her.

 

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Our church printed prayer cards for Leah and 1,500 hard copies of these were distributed and many more were distributed online and printed off.
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The clock was ticking. Now we just had to wait for Bristol Children’s Hospital to ring with a date for Leah’s admission for her bone marrow transplant.

The sooner, the better, we thought, so that we could get Leah’s treatment over and done with and all of our lives could return to normal.

Leah looked the picture of health, she had the most amazing doctors looking after her and thousands of people were praying for her. What could possibly go wrong? That’s where my thought processes were in July 2013.

I have since learned that not all people who are ill and dying actually look like they are ill and dying. I still think that Leah’s doctors are amazing – they did everything in their power to save her life.

Thousands of people prayed for Leah’s healing and I’m grateful to everyone who prayed and I don’t have answers or explanations, some things in life are a mystery.

I continue to believe in a God of love who had a perfect plan for Leah’s life and who has a perfect plan for mine too, although right now that plan feels anything but perfect.

 

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The Importance of Nail Varnish

The Importance of Nail Varnish

I still haven’t unpacked all the bags of Leah’s personal possessions that came back from Belfast City Hospital after she died – it’s just too painful. I glanced in one of them this morning and saw this and burst into tears.
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Each of Leah’s emergency hospital admissions here in Ireland resulted in the nurses having to find a bottle of acetone so that she could remove her nail varnish. Leah loved having her nails looking well.
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On our first night in the Cancer Centre on Friday 27th December 2013 the nurses were reluctant to make her remove her beautiful nail varnish. However Leah’s oxygen saturation levels were worryingly low and the staff speculated whether they were really that low or whether the finger probe just wasn’t reading right because of her nail varnish.

Obviously this was all very stressful so I asked the staff for acetone to remove the nail varnish from one finger nail to end the ambiguity.

On Saturday 28th December Leah was transferred to Intensive Care and had to wear a finger probe all the time, so with Leah’s agreement, I also removed the nail varnish from one finger nail on her other hand.

After a few days, she really needed a choice of fingers so I removed the nail varnish from a second finger nail on each hand. Eventually, after several days, and with Leah’s permission, I removed all of her nail varnish.

I think it was really good that the staff didn’t insist on all of Leah’s nail varnish being removed before we were emotionally ready to do so!

As soon as Leah was admitted to ICU the doctor told me that Leah may not survive and I then discussed this with Leah.

We were hoping and praying for a miracle of healing until we eventually knew in our hearts that this wasn’t going to happen.

In a funny kind of way, keeping Leah’s nail varnish on for as long as possible was part of a desperate attempt to cling to normality in the face of overwhelming evidence to the contrary.