We Were in a Bubble

We Were in a Bubble

Once Leah went on the higher dose of oral steroids, the MMF and the weekly methotrexate, her GvHD symptoms settled down. She continued as an inpatient with her own room in the hospital by day, but we slept in Sam’s House, the Clic Sargent Hostel at night.

Leah set up a study area in her hospital room and the hospital teachers came to see her every day. In July when Leah had packed to go to Bristol, her entire hand luggage was filled with GCSE revision notes. Leah was adamant that she wasn’t going back a year and would continue with her GCSE studies no matter what.

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The teachers we mostly saw were M and J. They became good friends, Leah and I both looked forward to their daily visits. They were warm, understanding and very professional. They understood if Leah wasn’t feeling so well and they paced their work accordingly. I will never forget J reading excerpts from An Inspector Calls to Leah in her strong Leeds accent.

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As time went on, Leah was able to spend more time in SAMs House. She set up a study area in our room there too and diligently set aside time for her studies every day except Sundays.
On the 7th September we got to spend our first weekend in SAMs House. Pharmacy issued a shed load of medication for the occasion.

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Then, on Monday 14th September, we got even more exciting news – Leah was being discharged to outpatient status. We would live at SAMs House, attend Oncology Day Beds twice a week and if Leah’s medical condition remained stable then in 2 or 3 weeks time we would be given a date to book our flights home.

We decorated our room in SAMs House with all the lovely cards that people had sent us:

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During the day Leah occupied herself with studying for her GCSEs. There were staff on duty in SAMs House during office hours if she needed anything. The weather was consistently beautiful and I took myself out for a walk most days. I always varied my route so that I got to see different parts of the area around where we were staying.

I found a Cath Kidston store and browsed but didn’t purchase. I alternated between going to the Sainsburys in Clifton or the one on the Queen’s Road. I discovered Wilkinson’s and bought a weighing scales and bun trays so that Leah could bake.

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I admired the beautiful architecture around the local area.

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In the evenings, when it was quiet, Leah and I often strolled together in the nearby Royal Fort Gardens.

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We enjoyed spending time getting to know some of the other families who were staying in SAMs House. It wasn’t all doom and gloom – some of the young (and not so young) people found quite creative outlets for their sense of humour:

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One of the weekends Leah’s boyfriend Nic came to visit. They were able to enjoy the recreational facilities of SAMs House together.

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This gave me a couple of hours to myself and I slipped out to spend some time with another mum. She had got the keys to a house for herself and her child to use. He was post transplant and quite unwell. She needed help to get it ready. We spent a couple of hours cleaning all the surfaces with actichlor. It felt good to have a change of environment and we had a laugh together while doing it.

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The days that Leah attended Oncology Day Beds, we walked down St Michael’s Hill together in the crisp clear September air. I carried the rucksack that she had packed with her school work, ready for a catch up with the hospital teachers. As we walked, we chatted together about anything that caught our eye. Like this cute car.

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I have a tendency to walk fast, Leah was quite weak and could only walk slowly, so I invariably ended up ahead of her. She would call out “Mummy, slow down!” and I would answer “Leah, we’re going to be late for your appointment.” To which she would quietly reply “Mummy, there’s no benefit to you arriving at my appointment without me, so please slow down.” Then I would laugh, because of course, Leah was right, she was so wise!

On arrival at Oncology Day Beds, Leah was immediately ushered into a single room. This was to protect her from infection. However one day we heard a baby cry. We knew by the sound of the cry that this was a very young baby. Now if there was one thing that Leah and I loved and found utterly irresistible, it was babies!

After a couple of hours of hearing this baby cry on and off, I could resist no longer and went to find this bundle of gorgeousness. Her name was Millie, she wasn’t very old, she had been born with a lot of medical problems and her Mum feared for her little girl’s future. I established that this infant wasn’t carrying any infections and posed no medical risk to my daughter. I got permission from Millie’s Mummy and quickly smuggled Leah into her room and took this precious photograph.

I never found out what became of little Millie.

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Those few weeks in September were idyllic for me. I felt like we were in a safe protective bubble.

To be honest, I wanted to stay in it.

Onwards and Upwards

Onwards and Upwards

The August Bank Holiday weekend last year was very special. On the Friday Leah was transferred from the Bone Marrow Transplant Unit to the beautiful purpose built Adolescent Ward in Bristol Children’s Hospital. Leah had spent five long hard weeks in isolation. She now had a lovely single ensuite room on the adolescent ward.

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Although Leah wasn’t allowed to mix with the other patients, she could move about the ward and use any of the facilities when the other patients weren’t using them. She would now be allowed unrestricted visiting, so her sisters could plan a trip over from Ireland. In the Transplant Unit the only visitors allowed were myself, her daddy and her boyfriend.

Emma B. from Limavady and her boyfriend Nic were there to help us move. Nic’s mum Kerry was waiting to welcome Leah to the world outside BMT. Although Leah was still ill and weak, we were all so happy and so excited. We felt that the worst was behind us and now it was onwards and upwards.

Leah’s own consultant, Dr C who we adored, was on call the whole weekend. This was a real treat. Doctors visits over the weekend were more leisurely, with plenty of time for conversation. On one of these visits, Dr C was examining the palm of Leah’s hand, looking for signs of GVHD, when he said very seriously “I see a tall dark handsome young man in your life.” He was of course referring to Nic and we all had a giggle. Everyone was so upbeat.

A few times over the weekend Leah and I went exploring our new accommodation. Leah was very weak and tired easily. She wasn’t yet up to a game of air hockey.

We had a laugh when we discovered that the ward juke box had quite a collection of Irish rebel songs and we sat trying them out.

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Leah’s appetite was still poor and she was prone to vomiting. She was still being fed directly into her central line via TPN. However on the Bank Holiday Monday her TPN ran out and there was nobody available in Pharmacy to make up more. Dr C shocked me by telling us that we could go and spend the afternoon and night in our room at SAMs House, the Clic Sargent family hostel.

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Leah was so pleased that I couldn’t show how I really felt – scared. Even though I’m a nurse and our room in SAMs House had a phone with a direct line to the hospital, I was worried that my daughter was too ill to be left in my care. I didn’t tell her how I felt – she didn’t need to know.

We were dispatched in a taxi with several bottles of high calorie, lactose free, Fortijuice food supplement drink, that Leah had no intentions of consuming. All she wanted was her mummy’s home cooking.

This presented another dilemma for me, as in order to buy food, I would need to leave Leah on her own for approximately 40 minutes. So, with my heart in my mouth, I walked as fast as I could to the local Co-op and bought the fixings for Leah’s favourite dish – chicken fried rice. She could only eat a small quantity, but she said that it was the nicest meal she had ever tasted.

She had a lot of tablets to take at bedtime:

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I tucked her into bed that night, kissed her and told her I loved her. She slept soundly. For the first time in five weeks she wasn’t connected to any drips and wasn’t being woken by nurses coming to check her vital signs.

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Me – well I must have seen every hour on the clock! I had become so used to the beeping machines, the lights, the hustle and bustle of the hospital, that I couldn’t cope with the silence and the darkness. It was almost like bringing a newborn baby home from the hospital – I had to restrain myself from getting up periodically to check that Leah was still breathing. All the while I was berating myself for feeling like this and thinking how ridiculous I was being.

We returned to the hospital in the morning and resumed inpatient status. That one night outside the hospital had given Leah such a boost to her morale and helped her to glimpse the light at the end of the tunnel.

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 Forget Me Not Service

The Forget Me Not Service

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Yesterday 12 of us went to the N.I. Children’s Hospice for their annual “Forget Me Not” Service. It was very moving to be together with so many people each grieving the loss of a child. The service was quite simple but I found it very emotional. Before the service started there was an opportunity to display a photo of Leah and attach messages to it.

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The service opened with the choir singing the song “Somewhere only we know” that is associated with the 2013 John Lewis Christmas Advert. Just before Christmas 2013, Leah and I were invited to a school assembly at her former primary school, to receive a cheque for monies they had raised to support the Clic Sargent charity.

However that morning the pain from Leah’s spinal fracture was very severe and she was unable to come with me. I wept for most of the 15 minute drive from home to the school. It just felt so wrong that my daughter – who was supposedly recovering and “getting better” – seemed to have so much pain and a decreasing quality of life.

Every month since her transplant in August, Leah had developed a new complication or side effect. I found it hard to escape the nagging sense of uneasiness that I felt in my heart regarding Leah’s medical condition.

At the school assembly that morning they played the John Lewis Advert to illustrate a point in the principal’s talk. We don’t have a live television connection at home so I didn’t hear the song again until yesterday, but it immediately caused me to remember the sad feeling I had that December morning, that something in my daughter’s body just wasn’t quite right.

Leah’s hospital consultant in Belfast was very vigilant and very protective of her and she was being very closely monitored, so nothing was ever missed that could possibly be treated. In a discussion I had with Leah’s Bristol consultant after her death, he & I concluded that a mother’s intuition can sense things that can’t be picked up by blood tests or X-rays.

The hospice have two large memory books containing the life stories of the children who have died and these are carried up to the front during the service.

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Many weeks ago our hospice outreach nurse gave us blank sheets of card to write Leah’s life story for insertion in the Memory Book but these remained blank, as the thought of filling them in just seemed too painful for me. Last Tuesday a very kind friend came to our house and helped me to fill these pages in for insertion in the Memory Book before the service today.

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After the service we collected Leah’s memory stone and carried it out to the Quiet Garden and Rachel chose a space in which to place it.

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We spent some time chatting to parents whom I first met through work nearly nine years ago. When Leah was a little girl she met their very ill wee baby and her heart was moved to pray for that wee baby every night, during the time that I was in contact with them.

After we left the Children’s Hospice, Leah’s Auntie Evelyn had us all back to her house for tea. Leah and I stayed with Evelyn in Belfast for two weeks when we first returned from Bristol and I hadn’t been back to her house since, so I found that very emotional too.

However it was just lovely to have that time together – we were well fed, we enjoyed each other’s company and we managed a few laughs too.

Give us this day our daily bread

Give us this day our daily bread

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The emergency ambulance was due to collect Leah from ICU at Belfast City Hospital at 9.30am on Thursday 16th January 2014 to take her and I to the N.I. Children’s Hospice where her life support would subsequently be switched off.

The day before that was very busy. It was only late evening on Tuesday 14th January that I had gained “agreement in principle” that Leah could leave ICU to die in the Children’s Hospice, but by Wednesday morning Leah’s medical condition was deteriorating so rapidly that the staff needed to act fast in order to fulfil our wishes.

Thankfully some of my favourite staff were on duty including two consultants who always communicated openly and freely with me. The doctor informed me that Leah may not live long enough to make it to the Children’s Hospice on Thursday and that there was a possibility that she wouldn’t even survive the journey there. He also said that she was too ill to be resuscitated.

I asked close friends & family to pray that Leah would be strong enough to make it to the Children’s Hospice, so as to have a peaceful & dignified death surrounded by those who had been closest to her in life.

A nurse who didn’t normally work in ICU was sent there for a few hours that Wednesday and she offered to make Leah’s handprint for me – I was so pleased. The small things become the big things at times like that.

Although the doctors had been telling me for well over a week that my daughter was unlikely to survive, they still seemed to struggle with letting her go. At 8pm on the Wednesday night two doctors asked our permission to do another washout of Leah’s lungs. Leah had been unconscious since Monday and was in no distress whatsoever.

One doctor carefully explained to us that another possible diagnosis had been suggested and he wanted to do a lavage to look for evidence of this. The downside was that Leah could die during the lavage and we wouldn’t have the hospice death we had planned. The positive was that if they found what they hoped for then they might well be able to save her life.

I had included Leah’s boyfriend Nic and my niece Ruth in the discussion with the doctor. The doctor was very careful to make sure that each of us understood everything. We unanimously decided to let the doctors go ahead. They allowed us to stay with Leah during the procedure so that if she did die, we would be there for her final moments.

The procedure did not harm Leah in any way, but they did not find what they hoped to find. I heard subsequently that the doctors were on the internet until midnight searching for some last ditch means of saving Leah’s life that had not already been thought of.

Predominantly I felt relief that Leah didn’t die during the procedure, rather than disappointment that it hadn’t worked – in my heart I knew that my child was going to die and that my role was to ensure that her death was as dignified as it possibly could be.

People say “How did you do all that?” Or “I couldn’t have done that.” Well if you’d asked me a year ago, that’s what I’d have said too. What I’ve learned is that God only gives you the strength when you are in the situation.

Most of you will have learned the Our Father/Lord’s Prayer as a child and prayed “Give us this day our daily bread.” Every day on this journey I have to rely on God for the “daily bread” of strength and grace for what I have to deal with.

When the the Israelites were in the desert they had to gather fresh manna every day and so do I, by spending time with God every day, even if it’s only for a few minutes. Matthew 4:4

The Israelites didn’t always like the manna – they wanted quail. Sometimes I’ve felt that way too. I would have much preferred the quail of God’s healing miracle in my daughter’s life, but God has chosen to sustain me with the manna of His comforting presence.

Leah and I always said that our “theme song” for the 14 weeks we spent in Bristol was Matt Redman’s song “Never Once”

“Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful”

It’s like a lawn mower though not quite as big

It’s like a lawn mower though not quite as big

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On Monday 22nd July 2013 Leah entered an isolation room in the Bone Marrow Transplant Unit in Bristol Children’s Hospital and remained there for five weeks. She received twelve doses of chemotherapy over the next two weeks to prepare her body for transplant and she suffered all sorts of nasty side effects.

When her hair started to fall out she asked me to shave it off. Her boyfriend Nic filmed me doing this on the 7th August 2013. Leah was completely unable to speak at this stage as she had severe mucositis – inflammation and ulceration of her mouth. Oral mucositis is a common and painful side effect of chemotherapy.

Leah was on intravenous morphine for the pain and this made it difficult for her to stay awake. The beeping in the background was from one of the many pumps that she was attached to.

It’s amazing to look back and see how calm and peaceful Leah looked, at such a trying time.
Surely it is true what the Bible says in Psalm 29:11God makes His people strong.
God gives His people peace.”

Being a typical teenager, she took a selfie of her new image and posted it on Instagram:

Leah's first bald selfie