Today I opened one of the notebooks that I used for note taking during Leah’s many hospital appointments in 2013. Immediately my eyes were drawn to a sticky plaster carefully folded into a heart shape.
I instantly remembered where it came from – it was Friday 14th June 2013 and the five of us (our eldest was away working in the USA) were on our first visit to Bristol Children’s Hospital. As on every one of Leah’s hospital visits, she had blood taken that day. This was the first time that Leah had genetic testing done and the subsequent results were very significant. We also gave our consent that day for some of Leah’s blood to be frozen and kept at the hospital for future research.
After the nurse on Oncology Day Beds had taken blood from Leah she placed this cute sticky plaster with animals on Leah’s arm. Leah loved animals and she was very keen to visit Bristol Zoo or even make a return visit to Belfast Zoo – an ambition that was never realised sadly. Leah’s consultant in Belfast City Hospital informed her in mid December 2013 that her immune system could now cope with a trip to the Zoo. However with all the busyness of Christmas we did not have time to plan this before she died four weeks later – we always thought that there would be more time.
A few hours later this little plaster came off and Leah folded it neatly into a heart shape and presented it to me with one of her little smiles. I tucked it inside my notebook and there it sat until now. Another of Leah’s little ‘love notes’!
This also reminds me of God’s many ‘love notes’ to us. One of our favourite passages of Scripture to read during Leah’s illness was the last part of Romans Chapter 8. Leah and I drew great comfort from the fact that neither disease, nor chemotherapy, nor even death itself, would ever, could ever, separate us from the love of God that is ours in Christ Jesus.
Romans 8:38-39 “And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”
Leah was an avid reader. Her earliest favourite books were a series by Usborne Books, where she had to locate a tiny duck hiding on every page. Leah loved ducks.
Other favourites that soon followed, were the Spot Books and Kipper Books. Each page was soon memorised – by both of us.
Then Leah discovered the beautiful Maisy Mouse Books by Lucy Cousins. She fell in love with these too.
After this it was Enid Blyton – by the bagful. Leah’s shelves became laden with Enid Blyton Books. I wonder if there’s even one Enid Blyton title that Leah didn’t read.
I remember many years ago, the Annual Book Fair came to her Primary School and Leah asked me for money to buy “Happy Christmas Maisy“. In my naivety, I gave her £5 to take into school the next day. A rather forlorn looking Leah returned home from school with the £5 and a note from the teacher to say that she hadn’t enough money to buy the book that she wanted.
As a parent of four children, living on a low income, with a house already full of books, the idea of spending more than £5 on yet another book seemed ridiculous to me. But Leah was desperate to become the owner of this lovely Maisy book, with it’s sparkly pages. Leah loved glitter and sparkle.
I’m not sure if Leah got the book then, or later as a Christmas gift, all I remember is how much the book was treasured and loved.
Nevertheless, “Maisy Mouse” is certainly not something that I’ve given much thought to in recent years – until yesterday.
I was heading up to Bristol Children’s Hospital, for a prearranged meeting, with some of the staff who had taken such good care of Leah and I during the 14 weeks that we spent here in 2013.
The Hospital has it’s very own Shaun the Sheep, standing outside on the pavement.
To my amazement, I discovered that this Shaun is called “Maisy and Friends” and has been designed by Lucy Cousins. I felt so emotional when I saw it.
Even though Leah had long since grown out of those Maisy books, I know that she would have loved it. I felt both happy and sad when I saw it.
When I stepped into the hospital lift to begin my ascent to the 6th floor, I was delighted to once again hear the voiceover of Wallace telling Gromit which floor we were on, every time the lift stopped. Despite the fact that Leah and I spent 14 weeks here, we never tired of this enjoyable distraction every time we travelled in the relevant lift.
Once I entered the waiting area for Oncology Day Beds my emotions became overwhelming. There was another family waiting there and I didn’t want them to see me crying. They looked like newbies. I didn’t want to upset them and steal their hope. I looked around and spied the water cooler, so I busied myself with consuming cups of water.
Then our lovely TYA (teenage and young adult) cancer nurse specialist arrived and hugged me tight, quickly followed by the two amazing consultants who cared for Leah. We spent some time together. I gave them the fifteens that I had made for them in memory of Leah. Thankfully, the fifteens had survived the journey from Ireland unscathed. They remembered how Leah used to make these sweet treats for them when we were in Bristol. You can find the recipe here.
Then I had time to chat with some of the lovely nurses on Day Beds. More hugs and then it was time to go again. They were all very generous with their time. This grieving mummy appreciated that so very much.
There was one more place that I still needed to visit, but it was going to be very emotional. I needed the cover of darkness for this one.
At 10pm I left the girls in our hotel room and I walked once more in the direction of Bristol Children’s Hospital.
This time however, I walked on by, up St Michael’s Hill, in the direction of Sam’s House. Such a very familiar route.
In the safety of the darkness, my tears flowed. I wasn’t planning a visit to Sam’s House – I’m not ready for that yet. I certainly wouldn’t want to upset the families who are staying there, holding onto hope for their ill children.
I walked slowly past. I could see through the glass door, down the hall, to the room that belonged to Leah and I, for the duration of our stay.
My destination was just beyond Sam’s House, in the Royal Fort Gardens. Leah was immunocompromised and couldn’t go anywhere there was lots of people. She and I had enjoyed regular walks in the beautiful Royal Fort Gardens, in the evenings, when it was quiet.
We would sit on a bench and talk. She used to make me stay very still, so that she could see how near the grey squirrels would come. I write about some of the good times we had here.
There was no squirrels last night, only a very hungry looking city fox. Leah would have enjoyed that too.
I remained there a long time, in the stillness, remembering.
To help soothe my broken heart, I played ‘Abide With Me‘ by Matt Redman/Matt Maher on continuos repeat on my phone, while I sat alone in the darkness.
Yet, I wasn’t alone.
My Heavenly Father, who knows the end from the beginning, was there with me.
The words of this song gradually seeped into my soul, as I sat and wept and yearned for my second-born child.
Abide With Me
“I have a home, eternal home
But for now I walk this broken world
You walked it first, You know our pain
But You show hope can rise again up from the grave
Abide with me, Abide with me
Don’t let me fall, and don’t let go
Walk with me and never leave
Ever close, God abide with me
There in the night, Gethsemane
Before the cross, before the nails
Overwhelmed, alone You prayed
You met us in our suffering and bore our shame
Oh love that will not ever let me go
Love that will not ever let me go
You never let me go
Love that will not ever let me go
Oh You never let us go
And up ahead, eternity
We’ll weep no more, we’ll sing for joy, abide with me”
Eventually I took comfort from the fact that Leah is safe – safe in my Father’s house.
As David says in the Bible after the death of his child “I will go to him, but he will not return to me.” 2Samuel 12:23
I walked once more around the unlit but familiar path, then headed out past Sam’s House again, back down St. Michael’s Hill, past the Children’s Hospital and back to the hotel.
The girls were still awake and I had a nice bit of time with them, before we all settled down for the night.
This morning I read a beautiful blog post about buying Father’s Day Cards called Fathers Are Not Idiots.
When Leah and I used to attend Oncology Day Beds in Bristol Children’s Hospital, we were normally in a single room, as Leah’s immunity was so low.
However, one day, I happened to glance in one of the three bedded rooms and what I saw there just melted my heart.
I saw a pale child, with chemotherapy hair loss, sound asleep on top of his bed. Also asleep on top of the bed, was the child’s daddy, with his large frame curled protectively around his little son.
I quietly called one of the nurses over and the two of us just stood there, drinking in this picture of parental tenderness and nurturing. I felt like I was standing on holy ground.
How I wished that I could photograph the scene, but this family were outpatients and I didn’t know them, so there would be no way to obtain their consent.
I had so many emotions in my heart as I stood there gazing at this sleeping daddy protecting his sick little boy. I wondered did that daddy ever have the urge to scoop up his beautiful little boy in his arms and run away, far away, from all the needles and the poison (chemotherapy) that promised to make his child better?
As parents, our desire to protect our children from harm is so strong, but as adults we understand that sometimes the cure hurts and that they may even feel worse before they feel better. We hope and pray that it will be a cure and that they will feel better, because for some children, like Leah, the cure kills.
Nevertheless, I thought it was so beautiful that here in this busy Oncology Outpatients Department, this Daddy did the one thing that he could do for his child; provide comfort by getting on the bed beside him and enveloping him in his arms as he slept.
Sadly, not everybody has such a positive experience of their earthly father.
We live in a broken world.
However, the Bible describes God as our Heavenly Father. The most famous prayer in the Bible begins with the words “Our Father, which art in Heaven, hallowed be Thy name” Matthew 6:9 or, as I learned growing up “Ár nAthair atá ar neamh, go naofar d’ainm,”
This weekend Father’s Day is celebrated, but for those of us who don’t have an earthly father to celebrate, we have a loving Heavenly Father. One of the most beautiful descriptions of His love for us is in Zephaniah 3:17 (NKJV)
“The Lord your God in your midst,
The Mighty One, will save;
He will rejoice over you with gladness,
He will quiet you with His love,
He will rejoice over you with singing.”
She pleaded with me all week to bake her a rectangular sponge cake, cover it in chocolate butter icing and cut it into 25 pieces for her to share with her friends in school today.
I tried to negotiate various alternatives to this but she wouldn’t budge.
In recent years Leah did most of the baking in this house.
This very week last year, she and I were busy at Sam’s House in Bristol baking farewell gifts for the staff in Oncology Day Beds. For Leah’s Fifteens recipe click here.
On Friday 25th October ’13 we went to the hospital laden with home made sweetie goodies, for Leah’s last ever visit to Bristol Children’s Hospital.
Once Leah died, the baking cupboard became like a no-go area for me – it was just too painful.
It is so, so difficult for the remaining children when their sibling dies.
They have to deal with their own grief and loss, as well as the effect that this is having on their parents and on the entire family unit.
Nothing is normal any more.
Miriam’s teacher told me the sweetest thing recently.
The pupils were asked to do a written piece about their ‘hero‘.
All the other pupils wrote about famous people like pop stars and film stars.
Miriam wrote about Leah and said that she is her hero, for the amazing way in which she had dealt with her illness.
Thinking about this makes me cry, but it also blesses my heart so much to know that Miriam is proud of Leah.
I feel so proud of both of them.
Miriam has always been absolutely adored by her two older sisters.
Leah playing horsey with Miriam.Rachel and Miriam in 2013
Although it took me most of yesterday, in fits and starts, I’m really pleased to say that a very happy young girl is away to school today with homemade birthday cake for all her friends.
Tonight Miriam will have two friends over for her birthday sleepover.
This evening I’m taking them to a “pool disco” for their age group at our local Leisure Centre.
Miriam’s Auntie A. made her a gorgeous birthday cake for us to have here at the house.
On Monday 23rd September 2013 the unthinkable happened – little baby A in the Bone Marrow Transplant Unit died unexpectedly, just three days before he was due to be discharged home.
He had been in the unit when Leah was having her transplant. His mum lived locally and left periodically to visit her two other young children who also had medical needs. I used to gaze through the glass at this adorable infant. I had to fight off the almost irresistible urge to enter his cubicle and lift him for a cuddle. My head just about ruled my heart on this one.
I got to know his mum quite well and sometimes Leah was with me when she and I stopped for a chat. Leah and I were devastated on many levels regarding the death of baby A.
We had been told that Leah’s chances of survival were two out of three.
Despite having worked many years in the Health Service and having also worked with young children with life limiting conditions, I had never personally known a child who had died from cancer.
Up until this point, the possibility that Leah, or any child might die, still wasn’t something that I really believed was likely to happen. In my mind, the statistics applied to children I didn’t know, in some far away place like America.
Now, however, everything had changed. The statistics for children who died from complications of bone marrow transplant now had a face and a name. They even had a Mummy, someone I had come to know quite well. Leah and I were heartbroken for this family, but we were also quite unnerved.
Another factor in the equation was that Leah was on high dose steroids and it is recognised that these can cause psychiatric side effects such as depression. After this baby’s death, Leah’s mood started to plummet. She became desperately homesick and pined for her family and friends.
We were given an appointment with our consultant for Monday 30th September to meet with him to agree on a date for booking our flights home. On Sunday night 29th September Leah started passing blood stained urine and I knew that we were in trouble. She was up to the toilet every hour during the night.
On Monday morning I was too scared to tell Leah that we needed to bring our overnight bags with us to the hospital – she was fixated on getting a date for going home.
Leah saw her consultant alright – he told her that her haemorrhagic cystitis was more than likely caused by BK polyoma virus. It’s an opportunistic infection that can occur post transplant and is very nasty and difficult to treat. Leah became very upset when she realised that she was being readmitted to hospital indefinitely.
We spent the whole day in Oncology Day Beds because there was no beds available on the Adolescent Ward. Eventually we were told that the only beds available were on the Bone Marrow Transplant Unit. Leah was given a choice between the room in which baby A had died or the horrible cubicle 4 in which she had started off – cubicle 4 it was. Leah was in a very distressed state.
On Wednesday evening 2nd October ’13 Leah was transferred to a room on the Adolescent Ward. This was a huge relief to us, as her daddy & younger sister (aged 9 years) were booked to visit that weekend and children are not allowed to visit patients on the Transplant Unit, due to the strict infection control regulations.
October ’13 was the month that Leah found the hardest of her entire illness. I write in more detail about some of these struggles in It Was Worse Than Chemotherapy
I actually find it difficult to look at photos of Leah taken that month, knowing what she was going through.
Our youngest daughter’s birthday is on the 25th October. It broke my heart to have to tell my daughter that her Mummy probably wouldn’t be home in Ireland for her 10th birthday. Leah and I had been in Bristol since the 21st July. I had already missed her first day back at school and many other events in her life, that as her Mummy I didn’t want to miss.
So I decided to make the best that I could of our situation. While Horace sat with Leah, she and I set out to have fun in Bristol town centre. First we went to their amazing Primark store. She chose a Snowman jacket.
Then we had a pizza together. We followed that with her first ever trip to Build-A-Bear. When the sales assistant told her to hold the bear’s heart in her hand to make a wish, I could feel the tears sting my eyes. There was so much to wish for.
She called her bear Rainbow – I think it’s a cat actually.
Finally I took her to the Lone Star Candy BarAmerican sweet shop and gave her £10 to spend – she was ecstatic.
Leah absolutely loved having her younger sister and her dad over for the weekend.
This is what Leah posted on our private Facebook page around that time:
Many people responded and sent us pictures, encouraging words, assurances of prayer and suggestions of songs to listen to. Leah and I spent days reading all of these and listening to each song suggestion. We greatly appreciated everyone’s words of encouragement. This is one of the songs that was sent to us in response to Leah’s plea:
I’m Tired I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
I know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
My prayers are wearing thin
Yeah, I’m worn
Even before the day begins
Yeah, I’m worn
I’ve lost my will to fight
I’m worn
So, heaven come and flood my eyes
Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause all that’s dead inside will be reborn
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.
It was this incoming week last year that we had our very first visit to Bristol Children’s Hospital.
On Tuesday 11th June 2013 Leah sat a GCSE maths module at Limavady High School while I went to Tesco’s for some groceries.
As I was putting my groceries through the checkout my mobile phone rang and an unfamiliar voice asked me if I could have Simon & Leah in Bristol for an all day appointment that Friday. I was totally shocked and I asked if they could ring me back in 10 minutes after I had time to pay for my groceries and get out to the car. They phoned me back and we discussed the plans.
The rest of the day was manic, trying to make all the necessary arrangements.
On Thursday afternoon 13th June Horace, Leah, Simon, Miriam and I flew from Belfast Aldergrove to Bristol. While waiting at Aldergrove Airport Leah had her favourite Mango Passion Fruit Frappuccino out of Starbucks.
On arrival in Bristol we got a taxi to the flat at Clic Housewhere accommodation was being provided for us by the Clic Sargentcharity.
We went walkabout to try and get familiar with our surroundings. Leah had recently been presented with a gift of an iPad byL.O.S.T. (Limavady Outreach and Service Team) and she carried this everywhere with her and was using it to take photos.
We needed to eat so Leah consulted google and directed us to a lovely Chinese Restaurant called The Mayflower in a place called “The BearPit”.
We got a yummy takeaway which we ate back in the flat. I loved their King Prawns in Chilli Salt and I revisited that venue on a few occasions during my 14 week stay in Bristol. I always enjoyed a walk through the Bear Pit as it’s quite “quirky”.
Leah and Miriam were fascinated with the city fox in the garden of our accommodation. It seemed so tame unlike the shy ones at home that come and steal the hens when nobody is about.
Towards the end of our meal Leah developed stabbing chest pains and breathlessness. I wasn’t quite sure what to do – at home I normally phoned the “oncology helpline” and they always knew what to advise me.
I phoned the Bristol hospital switch board and was told that there was no oncology helpline. After some discussion, an emergency ambulance was sent to bring Leah and I to the hospital. Miriam was a great help and she stood outside in the dark watching for the ambulance to come.
Leah and I spent a couple of hours in paediatric A&E, her symptoms eventually eased and they didn’t find a definite cause. The doctor speculated that it could have been muscle spasms caused by Leah INSISTING on carrying her own luggage at the airport, including up and down steps.
We returned ‘home’ in a taxi totally exhausted, to where everyone else was sound asleep. It wasn’t a great start to our visit and I only managed a few hours sleep.
The events of the next day are also documented in my blog What If Your Healing Comes Through Tears – it was a very long day. We were given lots of information and we met a lot of people.
Leah had 13 blood samples taken. One of these will be kept long term so that when future scientific or genetic discoveries are made they can go back and test her blood for things that they don’t know about now.
Simon as the bone marrow donor had various tests also. Miriam was well looked after by Sue the wonderful Play Assistant. At one stage Dr C whisked Leah and I away into the bowels of the hospital for a consultation with an eminent paediatric dermatologist.
Leah had developed Beau’s Lines on her toe nails but not her finger nails. These often result from chemotherapy but Leah hadn’t had any chemo yet.
Horace, Leah and I had a tour of the bone marrow transplant unit. Horace, Simon and I visited “SAMs House“. Leah was by then too exhausted to accompany us, so Miriam stayed with her at the hospital to keep her company.
It was a long and traumatic day. I was so very glad that we had Miriam with us. At 9 years old she seemed oblivious to the awfulness of what was really happening around her. She happily chatted and skipped along – I was glad of her light hearted chitter chatter to ease the tension amongst us.
We left the hospital shortly after 6pm.
Leah, Miriam and I managed a quick bit of retail therapy in the fabulous flagship Primark Store.
Then we all headed out to the airport for something to eat before flying back to Belfast. It was dark and wet when we arrived in Belfast but Leah wouldn’t wait indoors to be collected – she insisted on walking with us from Arrivals to the far end of the long-stay car park.
It was after midnight when we finally got home – we were all very glad to get into our own beds.
Leah had some notebooks in which she wrote out poems, Bible verses and sayings that she found particularly encouraging. We were due to fly home to Ireland from Bristol on Sunday 27th October ’13. On Monday 21st October Leah was found to have a clot (thrombus) in a blood vessel and was admitted – yet again – to cubicle 4 on the Bone Marrow Transplant Unit. This is what she transcribed from the internet into her notebook as she sat in Oncology Day Beds waiting to be admitted:
“Life is but a Weaving” (the Tapestry Poem)
“My life is but a weaving
Between my God and me.
I cannot choose the colors
He weaveth steadily.
Oft’ times He weaveth sorrow;
And I in foolish pride
Forget He sees the upper
And I the underside.
Not ’til the loom is silent
And the shuttles cease to fly
Will God unroll the canvas
And reveal the reason why.
The dark threads are as needful
In the weaver’s skillful hand
As the threads of gold and silver
In the pattern He has planned
He knows, He loves, He cares;
Nothing this truth can dim.
He gives the very best to those
Who leave the choice to Him.”
My Journey: 