In October 2013 when Leah and I were packing to leave Bristol, one of the families that we had become close to gifted us a 2014 calendar containing beautiful colour pictures of Bristol. During our fourteen weeks there, I had fallen in love with Bristol – well, as much of it as I had seen anyway. I really appreciated this thoughtful gift, as well as their friendship.
A place of honour was found on the walls of our new home for this picturesque calendar. However, January 2014, the first month in that calendar, sadly brought with it the death of our beautiful daughter Leah.
We never discovered what beautiful scenes of Bristol were displayed alongside the other months, because to this day that calendar remains open on January 2014, still hanging on our wall, frozen in time.
To my knowledge this was not a conscious decision on anybody’s part, nor do I recall us ever discussing this as a family. It just is. Other calendars get turned over monthly and removed at the end of the year. When the time is right this calendar will come down too, just not yet.
Next month I will fly to Bristol with the one who hasn’t returned there since donating his bone marrow in the hope of saving his sister’s life.
We are going there for the University Open Day as he has expressed an interest in studying there next year. I’m quite familiar with the university quarter of Bristol: Sam’s House where Leah and I stayed when she wasn’t in hospital is adjacent to some of the university buildings. While Leah was busy studying for her GCSE’s at the study area that she had set up in our bedroom, I used to occupy myself with going for walks around the local area.
Although my children are grieving, their lives are going on and moving forward and that is just how it should be. Leah would never have wanted it any other way. Our eldest moved to live and work in England last week. We miss her but I’m just so proud of her. The day that she left N. Ireland I received lots of supportive messages from friends, which I really appreciated. One of the most encouraging messages that I received was this one:
Well done that, in spite of all your family have been through, you have raised a girl with an adventurous, independent spirit which you are nurturing. There will always be a part of her that will never leave home. Bon voyage.
Tomorrow I’m leading Children’s Church – something I seldom volunteer for since Leah died. This morning I was scouring the house for our Veggietales DVD collection to use one of them in Children’s Church, when it occurred to me that some of them might be in Leah’s bedroom. As I was searching through Leah’s possessions, I found myself lingering, reminiscing, and grieving.
Sometimes people ask me whether it gets easier as time goes on? I’m not sure if the pain of child loss ever gets any less. What has changed as time goes on is my ability to deal with the pain. I’m gradually learning some coping strategies that enable me to live with the pain of child loss, so that I can, by God’s grace, live a relatively normal life most of the time.
There are some of Leah’s belongings that I haven’t looked through at all since she died. Today, while going through a few of those, I came across a booklet that she had received at Girl’s Brigade called ‘Spiritual Sparkles‘.
I know that being a part of Girl’s Brigade was really important to Leah and that she would probably have read this booklet from cover to cover. I found myself glancing through it as I thought about my daughter. My attention was suddenly gripped by this page:
The ‘secret post-iter‘! That’s where she got the idea from! Leah was well known for writing encouraging notes on post-its and leaving them for others to read. In March 2013 Leah introduced this concept at the LOST outreach weekend for young people in Limavady.
Before we left Sam’s House in Bristol in October 2013, I was dispatched to the shops to buy her a packet of post-it notes. Afterwards one of our friends posted this on Facebook:
After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:
Leah also had lots of post-its stuck up around her own bedroom to encourage her as she recovered from her bone marrow transplant and battled GvHD (graft vs host disease). She struggled with the very unpleasant side-effects of high dose steroid therapy and chemotherapy hair loss and she needed all the encouragement she could find:
I miss Leah’s little notes; every time I do a clear out I find some little card or note of encouragement that I received from her over the years. I cry for what I have lost, I thank God for what I have had and I carefully place each note or card in a Memory Box.
I think the idea behind Operation Beautiful is really worthwhile. Their website explains their purpose:
The mission of Operation Beautiful is to post anonymous notes in public places for other people to find. The point is that WE ARE ALL BEAUTIFUL. You are enough… just the way you are!
I know that Leah was very concerned about the many negative messages that young people are getting and the effect that this is having on their self image and their self esteem. I can see why this simple concept would have really appealed to her. I think that it’s a lovely idea.
When Leah was on the lovely purpose built Adolescent Ward in Bristol, she was in isolation and could only avail of the excellent recreational facilities whenever none of the other patients were using them.
However some of the other young patients were well enough to be “out and about” and they clearly enjoyed a break from the confines of their room.
I also liked to ‘escape’ periodically from our lovely little room. I used to get an opportunity to do this when Leah was watching television. Leah liked the fact that I would bring back the ‘ward news’ and thereby give us something different to talk about.
Some of these young patients were bored and only too glad of an adult to interact with. Others were more shy. One of those whom I regularly saw, pushing her IV pole around the ward, was Alex Lacey. I used to smile at her and she would smile shyly back.
The adolescent ward catered for teenagers with any kind of medical condition, but Alex’s chemotherapy baldness, indicated to me that she was there for similar reasons to Leah.
Then, in October 2013, Leah and Alex were both discharged to Sam’s House, the Clic Sargent Hostel. Leah and Alex met and chatted. Leah said to me afterwards: “Mummy, I wish that I had met Alex at the start of my time here, not the end, she’s so lovely.”
I wished that they had met sooner too, Leah had longed so much for company of her own age. I could see that she and Alex had immediately ‘clicked’ and were clearly very compatible.
I met Alex’s lovely Mum and we hugged – relationships tend to be ‘fast-tracked’ in these ‘life and death’ situations. The Lacey’s were getting ready to celebrate Christmas (yes, in October), as Alex would shortly be going for a bone marrow transplant and was not expected to be home in time for Christmas.
Leah and Alex exchanged contact details and promised to keep in touch.
Shortly after we returned home to Ireland, Leah and I were absolutely heartbroken, when Alex messaged Leah to say that there would be no bone marrow transplant – Alex’s lymphoma was incurable.
I really struggled to get my head around this.
As I subsequently encountered so many ‘firsts’ without my darling daughter, I thought of Alex’s parents – they were potentially having their ‘lasts’ with their darling, only, daughter.
My first Christmas without Leah, was their last Christmas with their daughter. I tried to imagine what that must feel like, but I couldn’t, not really.
Can we really and truly understand what anyone goes through, unless we have gone through it ourselves?
This morning Alex’s Mum posted the saddest message on her Facebook page – the kind of post that no parent ever wants to have to compose:
“Our beautiful, precious daughter Alexandra has flown away to join the Angels. She passed away peacefully yesterday at home with David and myself by her side. Our hearts are forever broken. Xxx”
Please pray for all who mourn.
A few months back Alex recorded this very touching video in which she speaks so candidly about her illness, but without a trace of self-pity. I’ve watched it several times, but I have never been able to watch it without crying.
Alex’s lovely, gentle, sweet nature is so very evident.
I recently received a lovely encouraging message regarding my blog, from a mum whose son is in remission from his cancer treatment. She told me that although she feels blessed that her son is doing so well, she feels broken from her experience.
The brokenness – oh how I remember this brokenness that she’s talking about.
Although Leah was terribly homesick and desperate to get home, there was a part of me that wanted to stay in Bristol forever.
After spending 14 weeks immersed in the world of childhood cancer, I felt forever changed by what had happened. I felt like I didn’t know how to return to the outside world, or how to relate to those who hadn’t experienced our journey – Sam’s House just seemed a comfortable place to be, where no explanations were ever needed.
The medical expertise to understand and treat Leah’s rare condition lay in Bristol Children’s Hospital. I somehow imagined that if I could keep Leah there forever, then maybe we could beat this disease and all the nasty side effects of treatment. We had formed such close trusting relationships with the staff looking after us.
However the deaths of other children/young people who were in the transplant unit along with Leah, had a devastating affect on me.
I was also distressed about the children and young people dear to us who were still very ill in hospital, or who had just received bad news regarding their prognosis.
I returned from Bristol a broken person.
I felt like we were soldiers returning from the war, unable to celebrate our survival, because of the loss of much loved comrades who had fallen in the trenches.
I worried that people just expected me to be happy and grateful, because Leah had come through her bone marrow transplant and we were home at last.
I did feel thankful, I was very glad that Leah and I were home, but I also felt broken.
I had learned the horrible truth that calpol didn’t actually fix everything.
Nor could I ever again look at bruising on one of my children, without thoughts of leukaemia crossing my mind.
I could no longer treat illness in one of my children with casual nonchalance and tell myself “Ah sure, they’ll be grand.”
I was living in a state of high alert, with an overnight bag for Leah and I packed and ready at all times. If I heard her up to the toilet during the night I became anxious – her health was so fragile. I knew that if she spiked a high temperature, we had approximately one hour to get her to the hospital and on intravenous antibiotics.
I felt absolutely exhausted and totally lacking in energy.
I had no idea how to explain to people how I felt, or how to start rebuilding my life and my sanity.
On the 12th December 2013 I wrote in my journal “There are many days when I experience intense emotional pain. I want to be a walking example of the ‘joy of the Lord’ but I’m haunted by images of sick children.”
Then I wrote out a quote by Jerry Sittser that I had read the night before, that had resonated with me:
“I did not go through pain and come out the other side; instead, I lived in it and found within that pain the grace to survive and eventually grow.” ~ A Grace Disguised.
One of the things that I loved about our Bristol experience was the peer support.
Although Leah was only 15, she was cared for in adult services here in Ireland. Usually when she attended appointments here, the other patients we met were older than me.
In Bristol, Leah was cared for in paediatric services that catered for young people up to the age of 18. We also spent a lot of our time in the Clic Sargent Hostel, Sam’s House, that accommodated seventeen families and young people up to the age of 24.
That’s where we met Jack Jordan. There were three young adult men, all with a blood cancer, all staying in Sam’s House and attending the Oncology/Haematology Unit at the Bristol Royal Infirmary – the three musketeers.
This was a different unit to where Leah received her treatment, but back in Sam’s House in the evening, I would hear them laughing and joking about their latest escapades.
Jack was the quietest of the three, but he enjoyed their companionship.
Leah used to worry about Jack because he was so quiet. Jack was so pleasant and well mannered, as were all three of the young men.
I have a lovely memory of Jack and his Nan having tea with Leah and me one evening in Sam’s House. Leah and I were so far from home and family that our friends in Sam’s House became our temporary family.
After Jack relapsed in December 2014, we started talking via Messenger. He said he could remember us trying to feed him pizzas and take-aways at Sam’s House. That made me laugh – that would have been Leah and me alright!
Then he said the most beautiful things regarding my daughter: “Leah was always nice to me and had a great smile! Made me feel welcome and a friend.”
What beautiful words for a young man who was ill, to say regarding another young person who had also been battling a life threatening illness. Jack’s words really blessed me – letting me know that my daughter’s kindness had touched his heart.
I know how much Leah had cared about each and every child and young person that she met during her illness and how each and every one was faithfully prayed for by name each day. This is an excerpt from her prayer diary:
Earlier this year, Jack was expecting to be going for a life-saving transplant and we continued to talk via messenger.
He’s such a gentleman, he invariably replied to my messages with something like
“Thank you for all of your prayers and kind words Vicky you have really helped me a lot”
I had left Bristol before Jack and Laura got together, but he told me how happy him and Laura were and how much he loved her:
“Laura is amazing I love her and am so happy we are engaged ❤️”
Then, on the 14th April, Jack sent me the saddest message of all:
“Hello Vicky. I just wanted to tell you my cancer has come back and there is nothing they can do for me now. I’m getting married on Thursday 😊 I just wanted to say thank you for all your care, support and love you’ve shown me x”
Despite the sadness, I was so excited that Jack and Laura were getting married. I would have absolutely loved to have been there. I poured over every wedding photograph, along with members of my family.
Then, on Monday 20th April, I received my last message from Jack: “I’m just tired all over vicky ❤️”
I knew what that meant, I could read between the lines.
Today, Jack’s wife Laura, her little girl Lily, his family and his friends, said farewell to somebody very dear, somebody whose passing will leave a gaping hole in the lives of those who were closest to him.
Even though I’m a nurse and at the time of Leah’s diagnosis, I was sharing an office with the Community Children’s Nursing team who look after children and young people with a cancer diagnosis, I had somehow thought that nowadays cancer in children/young people was almost 100% curable.
Well I certainly got that wrong – very wrong.
Yes, thankfully, very many children and young people do survive, but the treatment journey can be long and gruelling. Some are taken by the illness, while others, like our daughter, are taken by the side effects of their treatment.
Those of us who are left behind then begin a different journey – the painful road of loss, of grief and of mourning.
At first, those closest to the loved one, may have the edge taken off the intensity of their loss, by the numbing effects of busyness and exhaustion.
However, as days become weeks and weeks become months, the harsh reality sets in.
We have loved and we have lost.
Those who have loved much will grieve much, indeed grief is the price we pay for love.
For those of you who are wondering – yes we have put up a Christmas tree and decorations this year. When I say ‘we’, I mean the kids – they did it all.
The crib figures are older than me – they were passed down to me from my parents. When I was growing up, the baby Jesus NEVER went in until midnight on Christmas Eve. I remember as a child, the manger lying empty the days leading up to Christmas, then getting up on Christmas morning and finding Jesus lying in the manger.
In pride of place on our mantelpiece is this beautiful Christmas Tree, hand made by a very dear friend called Esther Scobie.
Esther went to our church. She and I also attended a Precepts Bible Study group together. I used to love the Precepts Bible Studies but I gave up in February 2013 when I was becoming increasingly stressed about Leah’s blood results. There’s considerable homework with the Precepts Bible Studies and I no longer had the concentration or attention span to do it justice.
Esther’s contributions used to be amazing in our Bible study meetings. Everything she said was so relevant and meaningful. I shared a lot of personal stuff with Esther too, she always seemed so understanding.
Esther never lost the traditional art of letter writing. Over the years I received many cards from Esther, each containing welcome words of encouragement.
During Leah’s illness and especially during our time in Bristol, Esther was one of many dear friends who faithfully sent us cards and letters. Leah and I were the envy of the other residents of Sam’s House in Bristol, because the majority of the daily post used to be for us.
Esther’s cards were often accompanied by gifts as well. Her kindness and that of so many others, made our journey a little bit easier. Here is one of Esther’s lovely cards that we received.
Sadly, in April 2014 Esther went to be with the Lord, after going into hospital for a surgical procedure. So many of us mourn her loss, along with her heartbroken family.
A.A. Milne wrote in Winnie the Pooh,
“How lucky am I to have something that makes saying goodbye so hard.”
Thank you Lord, for a friendship so dear that loosing it is so hard.
Esther is not the only dear friend whom we have said goodbye to since Leah died, sometimes it’s hard to even process it all.
I’m so glad for the beautiful handmade little Christmas Tree that adorns our mantelpiece and reminds us of what a blessing Esther was in our lives.
I thank God for the many friends with whom He has blessed us on this journey – we couldn’t do this on our own.
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.
On Monday night 22nd July ’13 Horace and Simon flew into Bristol. At 8am Tuesday morning they reported to Oncology Day Beds at Bristol Children’s Hospital with Miriam in tow.
Simon needed blood tests and to be seen and examined by various doctors including a very good looking anaesthetic registrar from Newport – he provided an alternative and less depressing topic of conversation for us mummies for a few minutes after he left the room!
Horace went up to stay with Leah in the transplant unit and I came down to stay with Simon.
Simon went to theatre in the afternoon to have his bone marrow harvested from his hip bone under general anaesthetic. Simon was very good natured about everything and he never complained at all.
When I had said goodbye to Simon in theatre the nurse asked if I was upset and I said no, because I couldn’t begin to explain that I was much too upset to risk giving way to any emotion whatsoever. I felt that I had to keep a tight rein on my emotions lest they become like runaway horses and leave me completely undone.
When Simon returned from theatre he was transferred to their lovely purpose built Adolescent Ward. He was very drowsy but managed a smile whenever anyone spoke to him. The staff informed me that they were very pleased with the quality and quantity of the bone marrow harvested – I was so happy and relieved. This would now be frozen until Leah was ready to receive it.
In the meantime Leah was lying ill in the transplant unit with septicaemia. Around tea time when I had satisfied myself that Simon would be ok, I returned to Leah just in time to witness her having another rigor caused by her high temperatures. I called a nurse who immediately administered pethidine.
Around 10pm Simon managed tea and toast. He was discharged back to “SAMs House” in a taxi along with Horace and Miriam around 11pm. I think Simon took paracetamol at some stage but he didn’t complain much.
On Wednesday evening Horace and Simon flew home and my niece arrived from London to look after Miriam. On Thursday Miriam went to stay with my brother and his family in Cambridge for a week and then travelled back to Ireland with them.
Today I discovered this song on my iPad playlist and it brought me comfort:
SELAH – PART THE WATERS / I NEED THEE EVERY HOUR
When I think I’m going under, part the waters, Lord
When I feel the waves around me, calm the sea
When I cry for help, oh, hear me
Lord and hold out Your hand
Touch my life
Still the raging storm in me
During our long 14 weeks in Bristol there were various people who came to Leah’s single isolation room during the day and made her smile, especially on the amazing purpose built Adolescent Ward.
There were so many lovely nurses and a ‘ward housekeeper’ who wore a yellow top – the colour of sunshine – she was a ray of sunshine in our lives. The staff who cleaned our room and served Leah’s meals always brightened up our day too.
Then there were the hospital teachers, they quickly became very special friends and we both looked forward to their daily visits.
The daily doctors rounds also brought us visits from lovely people who had become good friends and who took the time to listen and to reassure. Nothing was ever too much trouble.
Even though we longed to return to N.I. it was terribly hard to say goodbye to the other families and the staff when it was time to leave Bristol, we had formed so many close relationships.
There was perhaps one person more than any other who helped to break up the monotony and boredom of prolonged hospitalisation and isolation for Leah – Sue the Play Assistant. Sue came regularly to Leah’s room with a supply of craft materials for Leah and ideas on how to use them.
Leah was immune suppressed so everything had to be new and unused. We were there a long time so Sue needed lots of ideas for Leah. However, even when we were staying in “Sam’s House” and attending the hospital as a Day Patient, Sue continued to motivate Leah with a supply of suitable materials and ideas.
The Wallace and Gromit Charity supports Bristol Children’s Hospital so there is a lot of Wallace and Gromit paraphernalia around the hospital which resulted in Leah and I both developing an immense affection for Gromit.
Sue provided a T-shirt and a template and Leah made herself a Gromit T-shirt – I’m sure Leah didn’t intend me to publish this photo of her sporting a face-mask but it’s the only one I have of her modelling her Gromit T-shirt. It was taken in our room in “Sam’s House” – it doesn’t look very tidy, does it?
Leah decorated a little wooden bird house which she hung in the garden of “Sam’s House” before she left. Other craft items made by Leah were given as gifts to friends.
Before we left Bristol Leah took to knitting scarves for her teddies with wool and needles provided by Sue.
The NHS gets such bad press sometimes but Leah and I had so many positive experiences of the care she received both in Bristol and in Northern Ireland.