Guest Blog – Who She Was To Me

Guest Blog – Who She Was To Me

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Jenny and Leah

One of Leah’s close friends has written this beautiful tribute to her, called Who She Was To Me.

The Bristol visit she refers to was in October ’13, but to me it feels like it was only yesterday.

It was Leah’s 14th week away from home and in another country. Much of that time had been spent in isolation. She had been horribly ill, enduring countless side effects from her treatment. She had become very lonely and longed to see her immediate family and close friends.

Children/young people with serious or life threatening illnesses sometimes get visited by well known singers or actors to cheer them up.

Leah wasn’t interested in seeing anybody famous, but she was really cheered up (and so was I) by the two separate visits that we had that week from young people from back home. They were in England for other reasons, but they both took the time and trouble to get to Bristol Children’s Hospital, to enter our world and brighten our day:

Who She Was To Me

She smiled a lot. Like most people, she was most beautiful when she smiled. I remember once describing her as a diamond; the pure white light of Christ shone in and what came out was the refraction of a thousand shades of colour, flowing bold and bright onto everyone around her. And, like a diamond, she shone brightest against the blackness of this world.

I met her when I was sixteen. She was wearing a “To Write Love On Her Arms” band around her wrist and instantly we clicked. Several weeks on it was like an ancient bond, something God himself put into motion.

One time in particular, I remember, after Youth Fellowship at her church her mother came to pick her up but my dad was typically running late. As any fifteen year old girl is aware, mummy wouldn’t be too pleased waiting in the car-park for longer than a few minutes. But she waited. She waited with me until my father pulled up in the red Passat. She hugged me tight and skipped off down the steps. That was the kind of person she was though. She would put others before herself; if you were happy she would rejoice. If you were worried or unhappy or lost she would empathise and intercede in prayer. She was a selfless being.

I didn’t realise is at this point, that one day this young girl would change my life.

“I haven’t been feeling too well for quite a while now. So mummy made an appointment and I have to go for bloods on Tuesday. There was almost worry in her eyes, but not quite- she wasn’t a worrier.

“The bloods were clear but ‘cause I’m still not better I have to go to Belfast for more tests. And one of those scans.”

“They didn’t find anything again. They want me back for an MRI next.” Before I left her this time, I made her a little card. A pathetic folded piece of pink paper with a flower on the front and a little word of encouragement on the inside. Petty as it was, she looked at it as though it was made of gold because she knew it was made of love.

It’s vivid, this part. When I dwell on it, it plays like a GIF on my mind. My phone rings as I exit Ebrington Square with my mum.

“It’s Leah,” he almost hesitates, “She has cancer. Her sister just told me, bone marrow cancer.”

I climbed into the backseat of the Passat with confusion stinging my eyes and explained to my parents what the subject of the call had been.

Facebook and texts kept us in contact. She and her mother created a Facebook page on which we were regularly updated. She told me she had to go to Bristol for treatment. I vowed I would visit her there. My cousin lives 20 minutes from where she’d be and I’d go to see her when I was over next. I promised. I kept that promise, even if it took a while.

I saw her once before this in Altnagelvin. She fell significantly ill right as her GCSE modules were approaching. Something called febrile neutropenia. She could have died if she hadn’t been treated right away. Rather than accept defeat and miss her GCSE modules, she sat in isolation and took her exams. That’s the kind of person she was; she battled when it seemed the fight was against her. She gained As and A*s in every one of them. I went to her on the evening of the Maths exams to give her mother a short rest. I gave her the small shell decorated bracelet I bought on holidays, and tying it around her wrist she gave me that same look she gave me when I gave her the petty card, as though I had given her gold. I remember the apple juice cartons on the bedside table; the way the old leather visitors chair creaked and my yelp as the scalding tap water touched my fingers and her voice filtered through the bathroom warning me a little too late that the water was boiling hot. I remember how we talked about the difficult things in our past that were so similar, and the way she couldn’t remember the name of that song and I began to tear up as something in me knew exactly which song it was and as I started to sing, she welled up too because she knew there was no way we were an accident.

In October, almost 5 months after I last saw her, I made it into Bristol. I waited outside for a few minutes before I turned to her husky voice calling me and her mother just behind her. I hugged her so tight! Not too tight, though. I knew she was still tender and I was afraid to hurt her. Her mot showed me up to the room which was home for the entire time she spent away from her old, normal life. I saw the giant Gromit statues painted all around the hospital, the ones from her photos and I smiled.

Through my time there, I was introduced to Leah’s new way of life, a life she was soon to leave behind. I met her nurses, doctors and tasted the tray-bakes they loved to share- fifteens, without the cherries. She asked to me tweeze her eyebrows. She joked at how although her hair was missing, her eyebrows didn’t co- operate, and if I made a mess of them, we could blame the chemo. That’s the kind of person she way. She wasn’t afraid to laugh amidst the adversity; to see the joy in life. I painted her nails. She liked to have her nails painted to mask the discolouration from treatment. I stayed a few hours, just to be with her. To see rest in the face of the girl who saw life as beauty everywhere. To see her smile in my company made me feel amongst royalty.

We never finished that last conversation. I never prayed with her that last time as was the only desire in my heart. We didn’t take a final selfie together. As the cannula in her arm spilled a pint of blood right before she got up for a scan, my empty stomach rushed me to the toilet as she was escorted to a familiar area of the hospital, which was of course in another building. The nurses refused to let me follow her until it was certain I wasn’t going to faint. An unfamiliar labyrinth of corridors met me and 20 minutes later my lift out of Bristol arrived. I stood outside contemplating running back inside only to be greeted with a beep of the horn and a text simultaneously- from Leah: “Where did you go? I’m back in my room now. Can you come back??” But I couldn’t. And that’s the way it went.

She came home again, to a new house. But home is where we belong and she belonged with her mother and father, her brother and sisters. Her friends and boyfriend.

On Boxing Day, Leah took difficulties breathing. They realised it was a difficult infection in her lungs, complications after treatment. She spent her sixteenth birthday in isolation on a ventilator and posted a selfie with her mummy. That’s who she was. She loved through everything that was against her.

On January 16th, sixteen days after her birthday I received a text from her mother reading “At…pm today, Leah went to be with her Lord…” and I collapsed. I wasn’t as strong as she had been all that time. She went home then. Real home; home to her Father. The One who taught her perseverance, to battle, to love unconditionally as she was loved unconditionally. Taught her to find joy amongst the pain. And she taught me. That’s who Leah was.

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.

The only hand that we can play is with the cards that we’ve been dealt.

The only hand that we can play is with the cards that we’ve been dealt.

I woke at 6.30am this morning with a migraine – nothing unusual there. I took my usual prescription medication and lay back in bed to wait for it to work.

However, instead of getting relief, I became sicker and sicker.

This was the day that we were getting solar panels installed, so the men were here doing that, as well as a joiner and an electrician. There was a lot of drilling. My husband attended to them.

I stumbled to the bathroom and found a receptacle to bring back to the bedroom into which I could vomit.

By midday I still couldn’t even sit up in bed without triggering an episode of vomiting bile. I was starting to feel very desperate.

Then I remembered the stash of medication still in Leah’s bedroom. I tried to remember if we still had any of the powerful anti sickness drugs she used to take when she was having chemotherapy.

Then I realised that even if we had, I wouldn’t be able to swallow them, as I was too sick.

Then I remembered the hyoscine patches – Leah used these in conjunction with several other anti sickness drugs to combat the severe side effects of intensive chemotherapy.

My eldest daughter was dispatched to search Leah’s medicine drawer and thankfully she soon returned with the patches.

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I stuck one behind my ear and lay motionless for another hour. By 1.30pm I was able to take oral pain relief that took the edge off the pain and enabled me to sit up in bed at last.

Since Leah’s anniversary I have been concentrating on my positive memories of Leah. I’ve been trying to train my mind to remember the good times.

This morning has temporarily taken care of that.

Memories have flooded back of  our beloved child who was so ill from the side effects of her treatment, that she was simultaneously on four anti sickness drugs – ondansetron, nozinan, metclopromide and hyoscine patches.

Still she vomited.

She even vomited up her nasogastric tube.

It was horrible.

It was a great relief in September ’13 when Leah’s gut healed and she was able to eat normally again.

Our relief was short lived though, as Leah developed a succession of side-effects from her treatment, each one a disappointment and each one greatly interfering with her quality of life.

On the 27th December ’13, as we travelled to a routine appointment at Belfast City Hospital, Leah vomited profusely in the car. That was the first clear sign that something was seriously wrong.

It was in fact, the beginning of the end.

Leah kept insisting that day that she wasn’t sick, that she had vomited because of drinking some water too fast.

I think Leah denied feeling sick for two reasons  (her CT scan later that day showed that she was seriously ill):

A) Leah no longer knew what it felt like to be well.
B) She was desperate to go to the family party that was arranged for that night – her first since her transplant.

Leah continued to vomit frequently until she went on the ventilator on Thursday 2nd January. Then she was tube fed again and her gut seemed to settle down.

Life is rough sometimes.

However the only hand that we can play, is with the cards that we’ve been dealt.

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Many times life doesn’t make sense and we don’t understand why things happen the way they do.

As a Christian I believe that somehow or other, the cards that I’ve been dealt were chosen for me by a loving God.

There are days that it doesn’t FEEL like it, but I believe that God has, does and will give me the strength to face every situation.

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I believe that this world is not all there is.

Jim Reeves expresses it well in his song

“This World is Not my Home”

This world is not my home
I’m just a-passing through
My treasures are laid up
Somewhere beyond the blue.

The angels beckon me
From heaven’s open door
And I can’t feel at home
In this world anymore.

Oh Lord, you know
I have no friend like you
If heaven’s not my home
Then Lord what will I do.

 

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:

 

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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Chilli Noodles

Chilli Noodles

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Today, for the first time since Leah died, I cooked one of my favourite dishes – chilli noodles. I’ve cooked for others many times since Leah died but NEVER specifically for myself.

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The day that Leah went on the ventilator was the day that food ceased to hold any pleasure for me and became merely a means of survival.

At times since then I have struggled to even swallow. Bowls of cereal, or bread and cheese, became my staple diet for many months.

I knew from what the ICU doctors told me, and from my own research, that once Leah became ill enough to require ventilation, that only divine intervention would guarantee her survival.

The consultant looking after Leah that day upset me further by the tactless manner in which he spoke to me. One of the nurses told me at the time that he’s usually very nice, but that he had been very uptight because he was worried that Leah was going to die – was that supposed to make me feel better?

Lung complications post transplant can be very difficult to treat, over a six day period Leah’s lungs had not responded to any of the treatments that had been tried – her condition just kept getting worse and we just kept praying and holding onto hope. I wrote about the day that Leah went on the ventilator here.

I noticed that once I returned to work in September I found eating a little easier – a bit of distraction probably and having another focus. Around October time I eventually stopped losing weight.

Yesterday in Cosmo which is a buffet style “eat all you want” kind of place, I noticed as I sampled the various Chinese and Indian foods, that my taste buds seemed to “wake up”. I started to recall what it felt like to actually enjoy eating.

On the way home from Belfast I pondered the fact that it was now almost 12 months since I had cooked the very spicy, chilli vegetable dishes that I once loved. Thankfully I still have chilli’s in the freezer, leftover from the time before Leah died, when I consumed an average of a chilli per day.

It must be reassuring for my kids to see me doing some of the things that were once “normal” for me. My eldest and my youngest have inherited some of my food preferences so they each tucked into a bowl of spicy noodles today too.

Strange the many and different ways in which trauma and grief can affect us.

Today one of Leah’s friends sent me a link to a beautiful song called ‘I Believe’ by Chris August. I had never heard it before and the words are lovely.

R.I.P. Caiden Tang

R.I.P. Caiden Tang

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In the mid eighties I worked as a nurse in England. Part of that time was spent doing agency work and I worked in several different hospitals.

Everywhere I worked I met Irish nurses, so I could be forgiven for assuming that all English hospitals have a fair complement of Irish nurses.

What a disappointment when Leah and I got to Bristol Children’s Hospital and discovered NO Irish nurses. I asked a nurse on the Transplant Unit where all the Irish nurses were and he told me that he had worked in the hospital for 15 years and had met only one Irish nurse in all that time. I was gutted.

Leah and I were so far from home and family. I longed to hear a familiar accent and meet someone who understood our culture. Then I discovered that there was another child from N. Ireland on the unit – Caiden Tang. His mum Kathy and I instantly became friends – partners in crime more like!

Kathy and I were each in lockdown in isolation cubicles with our very sick children so we relied on snatched moments at the linen cupboard or in the changing rooms to have a quick conversation – and even a giggle. We both knew that a sense of humour was essential in helping us retain our sanity.

Caiden was five years old and was very unwell after his transplant. He was so weak that he had to learn to walk again. When I was entering or leaving the BMT Unit I used to wave into Caiden. His bed was full of teddy bears, his cubicle walls adorned with his absolutely favourite band – One Direction.

Caiden was first diagnosed at the age of five months so Kathy had been on this road way longer than me. Kathy’s tenacity, courage and dogged determination to make sure that her child always got the best possible medical and nursing care inspired me greatly. Her sense of humour through it all was like a tonic.

Occasionally, if Leah’s boyfriend Nic was visiting her and Caiden’s dad Raymond was with him, Kathy and I got an entire evening together – now that was a treat! We spoke the same language – Norn Irish English and we had a similar sense of humour – a little bit crazy!

Children weren’t allowed in to visit on the Transplant Unit but Caiden had been stuck in a tiny isolation room for months and was desperately missing his older sister Ellie. Ellie was also desperate to see Caiden.

Kathy understood the importance of Caiden’s emotional wellbeing and the impact this could have on his recovery. So one quiet Sunday in August, Ellie was surreptitiously smuggled into Caiden’s room and the joy on their faces was very evident in the photographs.

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Kathy and Caiden left Bristol the week before us. They had to fly back to Belfast by air ambulance as Caiden was still very unwell.

Back home Kathy and I kept in regular contact but were unable to meet up at that stage due to caring for our children and the fact that we don’t live near each other.

When Leah was critically ill in ICU in Belfast City Hospital Kathy sent me heartfelt text messages of support – the kind that only another “oncology mum” can write.

Kathy also posted a beautifully worded prayer request for Leah on Caiden’s Facebook page. This post received over 1,000 ‘likes’ and it encouraged my heart so much to know that so many people were praying for us and wishing us well.

I was so pleased in May 2014 when Caiden started to look so much better and was even managing to attend school. His progress was amazing.

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Then in September came the news that I didn’t want to hear – Caiden had developed pneumonitis. This was the post transplant lung complication that had taken my daughter’s life. I definitely didn’t want Kathy to experience the pain of grief and loss that I live with on a daily basis.

Caiden had been diagnosed with lymphoma at 5 months old. He had come through so much. He was such a wee fighter and constantly amazed the doctors with his ability to recover against the odds – surely this couldn’t be the end?

Just because pneumonitis took Leah’s life didn’t mean it had to take Caiden’s too – every child’s medical situation is different. I prayed for Caiden to be healed, as did so many others. As the scene in ICU in the Royal unfolded, I cried many tears for Kathy and her family.

Along with Kathy I clung to each tiny bit of hope, while at the same time realising with great sadness that her journey bore so many similarities to the 2.5 weeks that I had spent in ICU with my own daughter. I prayed for healing for Caiden, for strength and wisdom for Kathy and the family circle.

Then this morning, on my youngest daughter’s 11th birthday, came the news that shattered my already broken heart.

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Your Love Never Fails

Your Love Never Fails

Romans 5:5 (NKJV)
“Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.”

For most of January to mid July 2013, Leah had anaemia, thrombocytopenia and severe neutropenia; the main risk from this being susceptibility to infection.

Yet miraculously for most of that time, Leah was able to live a relatively normal life.

She attended Limavady High School up to mid May ’13. She attended Girl’s Brigade, Sunday SchoolChurch, L.O.S.T. (Limavady Outreach and Service Team)Youth Fellowship, BK Banter, went shopping, ate in restaurants, went to the cinema and travelled on public transport. She even went with the Girls Brigade for a weekend to an outdoor pursuits centre where she participated in every activity. I write here about Leah’s weekend away with the Girl’s Brigade.

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In February ’13 Leah had an appendicectomy and didn’t need antibiotics or a blood transfusion. She returned to school, via public transport, a mere ten days post surgery. The bus driver was very kind and lowered the bus for Leah every morning for the first week. Either her brother or her friends carried her school bag and escorted her around the school. She was determined not to fall behind with her school work.

Only once in that six months was Leah hospitalised for a high temperature – nothing ever grew in her blood cultures though and her temperature quickly settled.

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By the Summer of 2013, thousands of people were praying for Leah and I believed that prayer had created an invisible bubble of protection around her. This didn’t of course mean that we were foolish and threw caution to the wind. I was very aware of the need to help Leah make lifestyle decisions that took her low immunity into account and balanced sensible precautions with quality of life. For that reason, she dropped out of her Silver Duke of Ed Award, something that she was very upset about at the time.

On Monday afternoon 15th July ’13 we unexpectedly received a phonecall to say that a bed was available for Leah in the Transplant Unit and we needed to fly to Bristol that coming Sunday the 21st July ’13. The following few days were an absolute whirlwind of activity.

Thankfully one of my sisters came to stay, to help us get organised. Knowing that I would be away from my home and family for 2 or 3 months, there were many arrangements that needed to be put in place before we left the country.

As we prepared to go to Bristol I felt a fear of the unknown, but my overriding emotions were hope and excitement. I saw this as primarily an adventure whereby Leah would receive the treatment that would save her life. I believed that the combination of the prayers of God’s people and the expertise in Bristol Children’s Hospital would be a winning combination.

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On Monday 22th July ’13 @ 8.30am as I pressed the buzzer for Leah and I to gain entry to the Bone Marrow Transplant Unit in Bristol Children’s Hospital, Leah said to me “Mummy I don’t feel well.” That just about set the scene for things to come – whatever could go wrong did go wrong.

Within hours Leah was very seriously ill. Within a week Leah had five different bugs growing in her blood – abnormal ones that the doctors didn’t normally see in these circumstances, some were even resistant to antibiotics.

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Recently I sat and read through my personal diary from July/August 2013 and it made grim reading. To be honest I was shocked by some of the stuff that I read – I had forgotten just how awful those first few weeks were. I wrote about feeling so isolated and so devastated. I wanted to go somewhere where I could cry and scream, or even run away from all this awfulness, but there was nowhere to go – I needed to stay and care for and comfort my daughter. I felt disappointed with God and abandoned by Him and I wrestled in my heart with all of those thoughts and emotions.

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Do you know what was especially hard? It was looking at Leah and seeing in her face that she was wrestling in her heart with all of this too!

Sometimes we couldn’t even find words to speak to each other, as disappointment just hung heavy in the air between us.

No matter what though, Leah always wanted me to read the Bible and pray with her. We struggled at times to hold onto hope, but somehow in the midst of it all, we still knew the source of true hope.

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On Tuesday night 6th August Leah’s boyfriend Nic and his mum Kerry arrived in Bristol for a weeklong visit.

That was a major turning point for both Leah and I.

Leah was overjoyed to see her boyfriend. Nic proved to be most attentive and very capable, which meant that I was mostly off-duty during the day. Kerry was an excellent companion for me – there when I needed her but always sensing when I wanted space too.

During that week I was able to make phonecalls, get regular meals, fresh air, exercise, make friends with some of the other families of children receiving treatment and figure out my way around the centre of Bristol.

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That first Sunday that Nic was there with Leah was also my first opportunity to go to church at PipnJay in Bristol. God ministered to me so powerfully that Sunday morning. I write more about this in my blog post entitled Pip n Jay Church. Immediately after the service, four of the ladies in the church took Kerry and I into a side room and prayed with us for Leah and our situation.

By the time Nic and Kerry left Bristol, my strength had been renewed. Leah was also coping much better.

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The Bible verse that Leah had chosen in June 2013 for the prayer cards that were printed for her by our church was Nehemiah 8:10
“For the joy of The Lord is your strength.” 

Leah’s joy was again severely tested in Bristol in October ’13 due to a combination of unfortunate events: A baby we were very fond of died suddenly on the transplant unit at the end of September, Leah developed low mood as a side effect of medication, she became physically very unwell as a complication of her transplant and was readmitted to the Bone Marrow Transplant Unit AND all the time spent away from home and in isolation was really getting to her and she was dreadfully homesick.

It broke my heart to see my normally joyful, faith filled daughter, descend into the very depths of despair. A lovely nurse from the Child and Adolescent Mental Health Team (CAMHS) visited Leah a few times. One Saturday, when Leah was really struggling emotionally to cope with everything, the psychiatrist on call was brought in to see her. How physical illness and the side effects of treatment can ravage the mind!

Eventually, as Leah’s physical health improved, her mental health also improved. Getting home in November helped too. However, she was very anxious about catching up with her GCSE studies and even when home, her life was far from normal due to the complications of her transplant. Yes, Leah was happy and got on with things, but I could still sense an underlying low mood.

It was only in ICU in January 2014 when facing death, that Leah’s peace and hope and joy were fully restored. The closer she came to death the more joyful and peaceful she became. Leah told Nic that she wasn’t afraid to die. One Sunday afternoon in ICU Leah showed us the words of one of the songs that she loved to listen to –

“One Thing Remains” by Jesus Culture –

Higher than the mountains that I face
Stronger than the power of the grave
Constant through the trial and the change
One thing… Remains [repeat]

[Chorus:]
Your love never fails, never gives up
Never runs out on me [3x]
On and on and on and on it goes
It overwhelms and satisfies my soul
And I never, ever, have to be afraid
One thing remains

[Bridge:]
In death, In life, I’m confident and
covered by the power of Your great love
My debt is paid, there’s nothing that can
separate my heart from Your great love…

Yes the hope of healing left Leah and I disappointed, but not the hope of eternal life, not the hope of God’s love – there was no disappointment there. When I looked in Leah’s eyes in ICU in January 2014 I saw a different facial expression to the one that I had seen in those early weeks in Bristol, when we were both so shocked by how ill she had quickly become. In January 2014, although on a ventilator and critically ill, Leah’s face radiated joy and serenity.

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What about me? What about my joy and hope? On the 1st June 2013 I wrote in my diary that I was choosing joy to be my attitude as I walked this illness journey with Leah. I wrote that my time with Leah may be short or may be long, and I didn’t want to waste it being sad or depressed or angry – I was actually quite surprised when I recently read that in my diary, as I had forgotten ever thinking that way. I also wrote that my joy would come from knowing that God is in control of our lives.

By the time we returned from Bristol at the end of October ’13 I hadn’t much joy left, sadly. Firstly, having seen my daughter suffer both mentally and physically eroded my joy. Secondly, seeing so many other children very ill, on chemo and knowing the families of some who died, also stole my joy. I’ve had to live with where my memory has been. I write more about this in my blog post Brokenness.

In December ’13 when Leah developed a spontaneous fracture of her spine I was distraught. I hated to see her in pain and needing help with personal care, especially when she was supposed to be getting better. I often lay in bed at night battling my emotions and trying to rein in my thoughts. However I made a conscious decision to be joyful over Christmas so as to enjoy that time with my family. Christmas Eve night was the first time in six months that the six of us were together under one roof and it felt so good. We had two lovely days together before Leah’s final admission to hospital. I write about this in Altogether At Last and also in I’m so glad that we were able to have Christmas together.

Since then of course, my emotions have been through the wringer. I cry every day. I cry in supermarkets. I cry in church. I cry in forests. I cry a lot while driving the car – I remember all the times spent ferrying Leah to and from her appointments, listening to our favourite music. Crying just feels normal, I miss Leah so very much.

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The Bible says in Ecclesiastes 3:4

“A time to weep, and a time to laugh; a time to mourn, and a time to dance

Right now I’m in a season of mourning – grieving and mourning are a NORMAL response to loss. There’s no shortcuts, because I loved much, I grieve much.

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The Bible says in Isaiah 53:3 that our God is “a man of sorrows, acquainted with grief” – knowing that helps me.

What also helps is the many people – family and friends – whom God has used to bring help and comfort to me and my family. Some of these people are in for the long haul and are very present in our lives. Others are cyber friends who send an encouraging comment just when I need it.

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Some are friends or acquaintances who appear out of nowhere when I’m out somewhere and falling apart inside. They come up and say hello and give me a hug and chat for a couple of minutes and give me a chance to cry or talk about Leah. Then they are gone and I’m feeling so much better and inwardly I say “Thank you Lord – that was just what I needed.”

The Girl’s Brigade CD

The Girl’s Brigade CD

Today I listened to this CD of worship songs recorded by Leah along with all the other girls in Kilfennan Girls Brigade in 2010.
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The money raised from sales of this CD was divided between Kilfennan GB and the NI Children’s Hospice, where Leah subsequently died in January 2014 in peace and dignity.

Every April our Girl’s Brigade finishes its year’s work with a fantastic display for parents and friends. The last performance on the night’s agenda is the finale. This is where the girls of secondary school age – the ‘Company Section’ – usually sing a medley of favourite worship songs/choruses.

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Leah is first on the right hand side of the middle row

I used to love the expression on Leah’s face as she sang – it radiated joy. Leah’s facial expression told me that she meant every word:

All I once held dear, built my life upon
All this world reveres, and wars to own
All I once thought gain I have counted loss
Spent and worthless now, compared to this

Knowing you, Jesus
Knowing you, there is no greater thing
You’re my all, you’re the best
You’re my joy, my righteousness
And I love you, Lord

Now my heart’s desire is to know you more
To be found in you and known as yours
To possess by faith what I could not earn
All-surpassing gift of righteousness

Oh, to know the power of your risen life
And to know You in Your sufferings
To become like you in your death, my Lord
So with you to live and never die

Graham Kendrick
Copyright © 1993 Make Way Music,

When Leah was three years old she came home from Good News Club and asked Jesus to forgive her sins and to live in her heart as her Lord and Saviour.

One of her favourite wee books used to be “Jesus all alone” that she had received as an Easter gift at the Parent and Toddler Group at our church. It tells the story of Jesus dying on the cross. She had memorised the words from cover to cover when she was very young.
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Early in 2012 when Leah was 14 she found herself struggling both emotionally and spiritually. That Summer she went to C.E.F. Camp (Child Evangelism Fellowship) in Rossnowlagh in Donegal and also to the ‘Livewire’ teen programme at New Horizon in Coleraine, where she met with God in a new and deeper way. This is a text she sent me that week:
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Leah stayed with friends in Portstewart for the week of New Horizon. At the end of that week I collected her and brought her home, a 40 minute journey.

Leah talked excitedly the whole way home about what she had learned about God and about what He was doing in her life. When we reached our house it was a while before she could even stop talking long enough for us to get out of the car. I was so delighted and amazed to hear everything that she was sharing with me. I remember the next night in the kitchen Leah hugging me and her telling me “Mummy I just love Jesus so much!”

In October that year Leah was asked to write out her testimony for a youth conference in Donegal.
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When Leah was in Intensive Care, on one of the days that the doctor had called me out to explain that my daughter was unlikely to survive, I came back into her room and searched on YouTube for the song “Our God is a Great Big God” and played it. Leah was on a ventilator and too weak to even open her eyes, but she immediately smiled and used her two hands to do all the actions to accompany the words.

Our God is a great big God
Our God is a great big God
Our God is a great big God
And He holds me in His hand.

He’s higher than a sky scraper
And He’s deeper than a submarine.
He’s wider than the universe
And beyond my wildest dreams.

And He’s known me and He’s loved me
Since before the world began.
How wonderful to be a part
Of God’s amazing plan.

The closer Leah came to death, the more joyful and peaceful she became.

She told Nic, her boyfriend, that she wasn’t afraid to die.

She was as sure of the truth in the words of the above songs on her death bed, as she had been when she sang them with the Company Section of the 320th Girl’s Brigade Company.

The Polly Pineapple Ice-pop

The Polly Pineapple Ice-pop

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Polly Pineapple ice pops will always remind me of Leah’s last days when she was on the ventilator.

 

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Thursday 2nd January 2014 was a very difficult day – Leah’s oxygen saturation levels had fallen lower than I had ever seen them go before. The doctor putting her on the ventilator had informed me that she may not survive the process of being ventilated. He had upset me further by telling me that I couldn’t hold my child’s hand until he administered the anaesthetic that would put her to sleep, as I would be in his way while he set up his equipment. He’d said that Leah might be fully anaesthetised for two or three days before they would gradually wake her up.

The ICU was managed by a team of consultant anaesthetists in rotation, so every day a different doctor was in charge – I met eight in total. They were all fantastic medically speaking and did everything humanly possible to save Leah’s life.

However, some of them had better ‘people skills’ than others. As the mother of a dying child I craved compassion and understanding, but sadly some of the doctors did not always show sensitivity in their dealings with me. Those who got it right were amazing and to them I will be forever grateful. Those who got it wrong I have now forgiven.

It was a hard road at times – the average age of the patients in ICU in BCH was 70 – the staff really weren’t used to dealing with a mother and child. Some of the doctors had children around Leah’s age. That seemed to have a positive effect on some doctors, making them more compassionate towards us, but for others it seemed to have a negative effect on their interactions with us.

In retrospect I can understand that different staff have different ways of dealing with difficult situations and the difficult emotions that these can produce. Since Leah died I have had conversations with some of the ICU staff, that have helped with my emotional healing.

At the time that Leah was ill and dying though I just felt incredibly vulnerable, sometimes it felt as if my heart was being dangled by a thread over a river of hungry crocodiles. When my favourite staff were on duty I felt protected and safe, but when it was staff that I wasn’t sure of, it felt very difficult.

Friday morning 3rd January I was sitting waiting to go into ICU when a very pleasant consultant I hadn’t met before came to speak to me. He said that Leah was coping well with the ventilator and that her oxygen saturation levels had improved. Not only that, but he said that Leah was now awake and that I could buy an ice- pop in the hospital shop for her to suck on.

I hated when Leah was fully anaesthetised and I loved when she was awake and could respond to me. While in ICU Leah communicated by typing on her iPad. This wasn’t quite as easy as it sounds though, because Leah’s medication affected her vision and made it blurry, so a lot of what Leah typed was unintelligible.

Leah tried to use the BSL (British Sign Language) finger alphabet to communicate with me, but it’s been ages since I’ve used BSL and the combination of emotional trauma and lack of sleep meant that my concentration was very poor and I just couldn’t remember what the different signs meant.

I asked the staff if they had some form of alternative/augmentative communication that Leah could use – they said that they used to have something but someone had dropped it and it was broken. So we just persevered with the iPad.

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This is one of Leah’s more jumbled communications – the really jumbled ones I would have deleted at the time. Sometimes I used to feel really exhausted trying to decipher her communication and I would have been relieved when she fell asleep again for a while.

 

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Other times Leah must have been less sedated and could write more clearly like here. Emma was the nurse looking after us that day. All of the nurses heard about Molly and Mikey and Charlie and were shown photos of them. They were two children and a teenager who had been in the transplant unit in Bristol at the same time as Leah and me and whose families we had become very close to.

Leah was on diuretics to dry out her body and remove fluid from her lungs. Having the ventilator tube in her mouth meant that she couldn’t close her mouth so her tongue became very dry. Leah told me that she didn’t mind being on a ventilator, the only thing that bothered her was the most awful thirst. She longed for a coke float or one of our joint favourite Marks & Spencer White Chocolate & Vanilla milkshakes.

Polly Pineapple ice pops were a major concession and this was apparently the first time that a ventilated patient in Belfast City Hospital had ever been allowed to suck an ice-pop. The only problem was that new permission for the ice-pop had to be sought every time the consultant on duty changed.

The consultant on duty usually changed around 8am & 5pm. One evening we waited so long for permission to be granted for Leah to have an ice-pop that the hospital shop was closed by the time that the necessary permission was granted.

Leah was told that she could have it first thing in the morning instead, but when the shop opened in the morning a different consultant was on duty so we had to wait for the necessary permission all over again. Once permission was finally granted I was away to the hospital shop like a hare to get the coveted ice pop before circumstances could possibly change again!

Never was an ice-pop so appreciated by anyone as those Polly Pineapple ice pops were appreciated by Leah. I used to hold the ice-pop for her. Sometimes Leah would doze off and wake up again and the ice-pop would have started melting and running down my fingers and my hands would get all sticky.

Sometimes when Leah was very tired I would let the ice pop melt in a paper cup. Then I would dip an oral hygiene sponge into the melted ice pop and let Leah suck the sponge – where there’s a will there’s a way!

Those were precious mother daughter moments – one of the little comforts that I could provide for her.