On the 15th June 2013 the young people were asked to write a letter to God and put it into a sealed envelope with their name on it. The youth leaders then explained that they would keep these letters in their sealed envelopes and return them to the young people in one year’s time.
Leah died six months later, so hers was returned to me then. It is so very precious to me.
I know that the print is quite faint so I have typed out Leah’s words underneath.
Leah’s Letter To God
Things are kind of crazy at the moment. Having cancer is mad and it’s a completely different world, I’m so scared. But in a years time I’ll be reading this and I’ll have had my transplant.
Lord I pray for healing and a full recovery. You are a God of miracles and You can move mountains for me! I want to focus on You and thank you for the blessings I’ve had this year.
Firstly for Nic, he has been so supportive, loving and caring. I really hope that when I read this next year that we will still be in a happy and Christ centered relationship.
I thank You for the blessings through the LOST Team, for Emma and our friendship and for Anne, Brian and Lisa, for the love they have shown me.
I want to thank You for being such an awesome and unconditional loving God, even though at times it feels like I cannot hear You, but God, I want this to be a testament of faith that next year when I read this, I will know that never once did You leave me and never once did I ever walk alone.
Your daughter X
The ‘Anne, Brian and Lisa’ that Leah refers to, were youth leaders on the LOST Team.
Barely two weeks to go and September will be upon us. Then our teachers AND our youth leaders will all be back in action, influencing the lives of our young people.
I want to say to anyone who works with young people, either in a paid or a voluntary capacity – Do not underestimate the importance of your role, or the extent of your influence in the lives of our young people.
Some of our young people are incredibly vulnerable and there’s often no way of knowing by outward appearance, just how vulnerable a young person is on the inside.
1 in 10 children and young people aged 5 – 16 suffer from a diagnosable mental health disorder – that is around three children in every class
Between 1 in every 12 and 1 in 15 children and young people deliberately self-harm
There has been a big increase in the number of young people being admitted to hospital because of self harm. Over the last ten years this figure has increased by 68%
0.2% or about 8,700 aged 5-10 year-olds are seriously depressed.
1.4% or about 62,000 aged 11-16 year-olds are seriously depressed.
If we are a people of faith, then we can pray earnestly for the young people that we come in contact with.
We can also avail of short, well recognised training courses like the widely available half day SafeTALK Training.
According to their website – “safeTALK is a half-day alertness training that prepares anyone over the age of 15, regardless of prior experience or training, to become a suicide-alert helper. Most people with thoughts of suicide don’t truly want to die, but are struggling with the pain in their lives. Through their words and actions, they invite help to stay alive. safeTALK-trained helpers can recognize these invitations and take action by connecting them with life-saving intervention resources.”
Sometimes, providing a caring, listening ear and signposting somebody to an appropriate source of help, is the most important thing that we can do.
At the beginning of 2013 Leah was having weekly blood tests. The haematologist in our local hospital had booked her in for a bone marrow biopsy, but I received a phone call the day before it was due to take place to say that it had been cancelled (postponed) by the regional paediatric haematologist in The Royal, as she believed that Leah’s weekly blood results weren’t consistent with any nasty bone marrow disorders.
The abnormalities of Leah’s red blood cells had been diagnosed as hereditary elliptocytosis and now they just needed to come up with an explanation for her severe neutropenia and steadily decreasing platelet count. They were veering towards the cause being some type of autoimmune disorder.
On the phone to my sister I told her that I didn’t agree with the diagnosis – I didn’t believe that Leah could possibly have developed two concurrent but distinctly separate haematological abnormalities.
This seemed to me to be way too far fetched to be believable. Personally I was convinced that Leah had some rare form of bone marrow failure and this was what was causing all the haematological irregularities.
My sister wanted me to tell the consultant what I thought, but no way was that ever going to happen. I am a junior nurse and junior nurses should be seen and not heard.
Somewhere during Leah’s subsequent 18+ inpatient weeks and multitudinous outpatient appointments, I learned to speak up – I can’t imagine ever being so bird-mouthed again.
Another thing that I recall saying to my sister early in 2013, was that I wished that Leah didn’t have a boyfriend, because if everything was to go pear shaped, then I didn’t want Nic and his family to have to suffer the pain of loss that I feared that we could end up facing.
This is where I got it all wrong, where I couldn’t see the bigger picture.
In this promotional sound bite, Leah’s boyfriend Nic asks “Are the dark times in life meant to show us that God’s our guiding light, or are they just pointless?”
Tonight I attended the L.O.S.T. event along with our two younger children, and a couple of hundred young people.
During the event Nic spoke for 10 minutes and explained how He became a Christian, how he met Leah at L.O.S.T. in 2012 and how God has helped him through Leah’s illness and death.
Early in 2013 he had applied to go on an Exodus Outreach Team that Summer. Something went wrong and his application never went through. He was very disappointed about this as he really wanted to serve God and he thought that this was how he could do this.
The very week that Nic would have been away on the Exodus Team turned out to be one of the weeks that he spent with us in Bristol, when Leah was very ill in the transplant unit. Nic said he knew that he was exactly where he was meant to be.
I will never forget how awful those weeks spent in isolation were and how much it meant to have Nic and his Mum travel over from Ireland to be with us.
Nic’s Mum wasn’t allowed in to visit Leah due to the strict rules of isolation, but she was company for me when I left Leah in Nic’s care.
How could Leah have coped as well as she did, for those incredibly difficult nine months from diagnosis to death, if she hadn’t Nic by her side, a pillar of strength?
Leah’s response to her diagnosis was to simply say “God has a plan for my life” and “We have to see the bigger picture.”
What a blessing it was tonight to hear Nic speak, in that hall full of young people and hear him tell them that everything that happened was part of God’s plan for his life too and that God had helped him and given him the strength that he needed.
As Nic spoke, the word that floated around in my head was “blessed” – Leah’s illness wasn’t a blessing and her death certainly wasn’t a blessing, but how blessed was our daughter to have known the love of this fine young man in her short life.
After Nic had finished speaking we rose to our feet to sing a hymn of praise – In Christ Alone– by coincidence it was one of the hymns that we sang at Leah’s Funeral. We also sang it at Pip ‘n Jay Church In Bristol at the last ever Sunday Service that Leah was able to attend.
During the singing of this hymn Nic quietly made his way to where I was standing, to give me a hug and check if I was ok – why is life such a crazy mix of joy and sorrow?
I woke this morning to yet another quiet Saturday.
When did our house become so quiet?
It feels unnatural.
I had barely even adjusted to our eldest daughter being away at University when Leah became ill.
It was all go then, we still had a busy, noisy house.
Saturday’s were usually a day that Leah spent with her boyfriend Nic.
I was normally on call as “Mom’s Taxi”.
I remember the first Saturday after Leah was buried, how strange it felt NOT going to Greysteel to collect Nic off the bus, or seeing him at some stage during the day.
Thankfully, we have seen him on lots of other days. He’s the most amazing young man, who supported our daughter all through her illness.
Our family life was busy and noisy, right up to when Leah and I left home for Bristol Children’s Hospital in July 2013.
Then when we came back from Bristol, Leah’s immune system was so weak, that we couldn’t have lots of visitors, so the house was very quiet, although I didn’t mind it so much then.
We were just so relieved to be home again, together as a family.
Barely two months at home, then the wake and the funeral.
Visitors, lots of visitors.
Numbness, busyness, exhaustion.
I’m still trying to process everything that’s happened in the past two years.
It feels like suddenly, our younger children are two years older and more independent.
They spend lots of time in their bedrooms and seem to prefer interacting with electronic gadgets than going for walks with mum or dad.
Family picnics, board games, walks in the woods, it seems that we lost so much more than just our daughter when Leah became ill and died.
Our son is only interested in computers and our youngest daughter doesn’t want to do things on her own with her parents.
I yearn for my daughter but I also yearn for the type of family life we once had.
In the midst of it all though, I continue to believe in a God whose way is perfect.
I often think too about the Old Testament Bible story where Jacob wrestled with the angel:
Genesis 32:24-31 GOD’S WORD Translation (GW)
“So Jacob was left alone. Then a man wrestled with him until dawn. 25 When the man saw that he could not win against Jacob, he touched the socket of Jacob’s hip so that it was dislocated as they wrestled. 26 Then the man said, “Let me go; it’s almost dawn.”
But Jacob answered, “I won’t let you go until you bless me.”
27 So the man asked him, “What’s your name?”
“Jacob,” he answered.
28 The man said, “Your name will no longer be Jacob but Israel [He Struggles With God], because you have struggled with God and with men—and you have won.”
29 Jacob said, “Please tell me your name.”
The man answered, “Why do you ask for my name?” Then he blessed Jacob there. 30 So Jacob named that place Peniel [Face of God], because he said, “I have seen God face to face, but my life was saved.” 31 The sun rose as he passed Penuel. He was limping because of his hip.”
I feel that many times I wrestle with God – wrestle with Him over what I think is best for my life, over what I think that I need to get by, over how I think things should be.
Psalm 18:30 New King James Version (NKJV)
“As for God, His way is perfect;
The word of the Lord is proven;
He is a shield to all who trust in Him.”
I love this quote about grief:
Jacob limped for the rest of his life and I will too – in the emotional sense.
Nevertheless, I need to learn to dance, despite my limp.
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
The other day I was listening to one of John Piper’s sermons and I was really blessed. I credit John Piper‘s teaching for having instilled within me a strong sense of the sovereignty of God which has helped me to cope with Leah’s illness and death.
In this sermon John Piper says:
There are three ways that God protects His people from danger.
1) Sometimes He prevents danger from even arising on the horizon of our lives.
2) Other times He allows the danger to attack, and gives us the victory so that we live on and serve Him in gladness.
3) But in the end one enemy is never driven off, the enemy of death. We will all die if the Lord does not return in our lifetime. But here, too, God protects. He protects us from unbelief, and preserves us for His heavenly kingdom.
Leah was in category 3 – God allowed her to suffer but protected her heart from unbelief. As she lay dying in ICU she was so peaceful and serene. Leah told her boyfriend that she wasn’t afraid to die. Although of course, she wanted to live if at all possible.
I guess that I am in category 2 – a category I would never have chosen for myself – I would have chosen category 1.
Since my early teens, one of the ways that I have used to cope with stress, is by writing in a diary or notebook. Sometimes I write almost daily, sometimes I don’t write for months at a time. It just depends on what’s happening in my life.
As soon as Leah was diagnosed, I immediately started writing. I’m so glad of this now. If I was relying on my memory, it would all just be a blur, because that’s what stress does.
I recently read through my diary entries from the early weeks immediately following Leah’s diagnosis.
We received Leah’s diagnosis on Friday 19th April ’13. On Saturday 20th April ’13 I was booked into a Ladies Christian Conference in Ballymagorry, Co Tyrone, organised by 1Vision Jesus. Leah was spending Saturday with her boyfriend so I went to the conference as planned.
The theme for the conference was “Walking in the Fire“. The speakers were Gloria Kearney and Carol Heron. I felt like I was walking in the fire alright.
There was an opportunity for prayer ministry during the day and I went to Carol and Gloria for prayer. They laid hands on me and while they were praying over me Carol received a vision:
Carol said that I was sitting in a room and everything was dark and in the vision I asked “Why is everything dark?” Then in this vision a screen started to play like a cinema screen with pictures on it and I saw things on it that I couldn’t see while the lights were on. Carol said that this suggested that I was entering into a period of darkness that would bring spiritual revelation into my life and that I would receive new knowledge (new to me).
These words still blow me away, although in a sad kind of a way.
On Friday 26th April ’13 I wrote the following words in my diary.
Then a few weeks later I wrote this:
Kirsty came and introduced herself to us during our first outpatients appointment in Bristol. She was a fantastic friend to us during the 14 weeks that we were there. She regularly brought me food parcels when I was on “lockdown” with Leah in the Bone Marrow Transplant Unit. She also gave me a lift to church, or arranged for someone else to pick me up, the Sunday’s that I was able to go.
I remember that day at the “Walking in the Fire” conference, lifting my hands in worship, as we sang one of the songs that Leah so often played on her iPod:
10,000 Reasons By Matt Redman
The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes
[Chorus] Bless the Lord, O my soul O my soul Worship His holy name Sing like never before O my soul I’ll worship Your holy name
Away in a manger,
No crib for His bed
The little Lord Jesus
Laid down His sweet head
Be near me, Lord Jesus,
I ask Thee to stay
Close by me forever
And love me I pray
Bless all the dear children
In Thy tender care
And fit us for heaven
To live with Thee there
How can it be that after 10 months of daily crying and grieving that there are still whole areas of grief and loss that I haven’t even begun to address? All that it takes is some wee trigger and the floodgates of my emotions are thrown open.
Tonight at Girl’s Brigade the children were singing Christmas songs. This was the first time this year that I had heard any Christmas carols. It felt like a painful wound had been suddenly opened.
Last year our Christmas came to an unexpected and very painful end. On Friday 27th December I left the house at 8am with Rachel and Leah to drive to Belfast to take Leah to her regular weekly appointment at Belfast City Hospital.
We were all in good form because that night we were going to a big family get together in Donegal – our first since going to Bristol in July for Leah’s bone marrow transplant. Leah’s consultant had given her permission to go to the party.
My sister was flying in from London and was meeting us at the City Hospital. Leah’s boyfriend had been in England over Christmas and he was flying back that day in time for the party too. Leah was so excited.
By late afternoon Leah’s two aunties, her boyfriend and his mother had all congregated at the City Hospital. Sadly they all, along with Rachel, had to leave the hospital without us. Our Christmas celebrations had ended.
I eventually returned home on Thursday 16th January. I gathered up Leah’s Christmas presents, the packaging, the Christmas paper, cards, selection boxes and her unopened birthday presents and made room for her coffin.
Although “Away in a Manger” made me cry tonight – the words are also very beautiful. They tell the story of that first Christmas when Jesus – our saviour – came to earth as a baby. The carol finishes with a prayer that all of God’s children be made fit for heaven to live with Him there.
When Leah was three years old she asked Jesus to forgive her sins and to live in her heart as Lord and Saviour. Through her daily walk with God, through attending Church and faith based organisations – including Girl’s Brigade – Leah grew in her knowledge and understanding of God.
The peace and serenity with which Leah could face death leaves me in no doubt that the last verse of “Away in a Manger” is true of her. That assurance, despite all my tears and sadness, brings me great comfort.
We were told that at long last we could plan our return flights home.
Then, on Monday 21st October, just as we were booking our flights home, Leah developed a “line related” blood clot and was once again readmitted to Cubicle 4, the hospital room that we so disliked, on the Bone Marrow Transplant Unit.
Leah required a blood platelet transfusion at this stage as her platelets had dropped to 47 and a normal platelet count is above 150.
The doctor on duty could offer no reassurance that we would still be going home the following Sunday as planned.
I remember feeling stunned and numb and thinking “This just can’t be happening.”
The staff on the Transplant Unit seemed as shocked and upset about our circumstances as we were.
Webster, one of the healthcare assistants, made me my favourite cheese on toast, as I hadn’t eaten all day. I don’t know what his secret ingredient is, but he makes the most amazing cheese on toast.
Leah browsed their menu and ordered something more substantial, but cheese on toast is one of my comfort foods.
The night nurse on duty wouldn’t hear tell of me walking to the Clic Sargent House in the dark to get our bags for staying overnight. She ordered a taxi to take me there and back.
I hugged Leah tight then reluctantly left her alone in her isolation room, while I once more went and packed our bags for a hospital stay.
The next day it was decided that Leah could be discharged from hospital on daily anticoagulant injections.
We could fly home at the weekend but we had to attend Oncology Day Beds every day for the rest of that week for monitoring of Leah’s medical condition.
It was a busy week.
Two days before we were due to fly, Leah developed chest pain.
She had to have an ECG, a chest X-ray and an emergency CT scan.
Everything hung in the balance.
Eventually Leah got clearance to fly home – such relief.
Leah had baked fifteens for the Doctors and staff in Oncology Day Beds to say goodbye and thank you.
We got lots of warm hugs from the members of the team that we had grown especially close to.
I can tell you that two people were never as happy to see a “Welcome to Belfast” sign as Leah and I were on Sunday afternoon 27th October 2013.
I couldn’t stop crying – my emotions were all over the place!
Our eldest daughter was at the airport to welcome us.
Although I was desperate to get home and see everybody, I had some very mixed emotions.
I was acutely aware of just how unwell my daughter was.
I was excited about returning to Ireland and being reunited with friends and family, but I was nervous about leaving the care of Bristol Children’s Hospital.
In Bristol we were surrounded by families who were walking a similar journey to us and we could support one another.
Back home Leah was cared for in adult services so I had no contact whatsoever with other parents or families and therefore no informal means of peer support.
I couldn’t remember what normality felt like, nothing in life seemed familiar anymore, I was scared.
Leah couldn’t return to the house that we used to live in due to dampness and mould. Our new house wasn’t ready yet.
Leah’s Auntie E lives in Belfast and very kindly invited Leah and I to stay with her for a fortnight.
This seemed like a very good idea as it also meant that we were adjacent to Belfast City Hospital, where Leah’s post transplant recovery would be monitored.
Once we returned to our own home we would be 70 miles from the hospital.
Leah’s diagnosis of myelodysplasia with monosomy 7 was very rare.
Her particular variant of a Gata2 gene mutation was even rarer.
Bristol Children’s Hospital was where all of this was well understood.
I had developed such trust and respect for the staff in Bristol, I didn’t know if I could ever learn to trust the staff of another hospital in the same way.
Leah was being cared for in Children’s Services in Bristol.
Back home in N. Ireland she received her care in Adult’s Services and that felt very different.
We had our first return appointment at the Bridgewater Suite at Belfast City Hospital on Tuesday 29th October 2013.
Leah and I were both tearful and emotionally fragile.
We were used to the small intimate environment of the Paediatric Oncology Day Beds in Bristol, where everyone knew us and decorated cardboard cutouts of Gromit hung from the ceiling.
Where the smiling Play Therapist was on hand with interesting activities to distract and everything seemed geared to meet the needs of children, young people and their parents.
Bridgewater Suite in Belfast City Hospital on a Tuesday morning is crazy – there are patients waiting everywhere – it’s like a cattle mart.
Although the waiting area is extensive, it’s still not big enough, so some patients even sat on the window sills. We felt overwhelmed.
A single room was quickly found for us thankfully, as Leah wasn’t supposed to be mixing with crowds, due to her weakened immunity.
New relationships were formed and trust began to be established.
For the remainder of Leah’s short life, every Friday was spent at the Bridgewater Suite at Belfast City Hospital, where she received excellent care and attention.
During the two weeks that we stayed with Auntie E some fun times were had too.
We sat around her kitchen table and played Cluedo and Uno.
I kept winning at Cluedo and they accused me of cheating!
I wasn’t cheating – the two of them were busy chatting while I was very focussed and concentrating on the game!
Leah was very close to her Auntie E and loved her company.
We usually got a taxi back to Auntie E’s house after our hospital appointments, this cost approximately £10.
On one of these occasions, when we arrived at our destination, the taxi driver switched off the meter and refused to accepted any money.
Leah’s chemotherapy hair loss had given him a clue to her illness and he had learned a bit more of her story as we chatted along the way.
To be honest, the kindness shown to us by this total stranger cheered and encouraged our hearts way over and above the monetary value of the £10 that we saved, although we appreciated that too.
At weekends Leah’s boyfriend Nic travelled up by train to visit her.
When he was leaving we always walked with him to the train station, then Leah and I walked back together.
Leah was weak and couldn’t walk far.
The shortest way back was via an unlit, lonely, isolated path.
My mobile phone was fairly new and I didn’t realise that there was a torch on it.
Leah and I used to walk this path together, arms linked, in total darkness, surrounded by bushes on either side.
I used to be terrified, but tried not to show it.
I silently wondered if anyone would hear us if we’d screamed.
Sometimes the bushes would rustle and I would startle and Leah would say “Mummy don’t you tense up, because you’re making me scared.”
So then I would have to consciously relax my body, and control my breathing, to keep Leah from sensing my fear.
I was always so relieved when we reached the end of this lonely path and I could see the welcoming street lights.
In many ways our walk on this path was a metaphor for this whole illness journey that Leah and I walked so closely together.
I had to rely on God for the strength that enabled me to control my fears and emotions. It was vitally important that I remained calm and unruffled on the outside, so that my daughter didn’t sense the fears that I carried deep down inside, regarding her illness and its implications.
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.
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.
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.
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:
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.
I admired the beautiful architecture around the local area.
In the evenings, when it was quiet, Leah and I often strolled together in the nearby Royal Fort Gardens.
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:
One of the weekends Leah’s boyfriend Nic came to visit. They were able to enjoy the recreational facilities of SAMs House together.
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.
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.
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.
Those few weeks in September were idyllic for me. I felt like we were in a safe protective bubble.
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.
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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.”