Alexandra – A Very Beautiful Girl

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.

Adolescent Ward,
Bristol children’s Hospital

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.

Brokenness

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.

The Birthday Cake

Miriam, my youngest, will be 11 tomorrow.

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.

We Were in a Bubble

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

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

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.

To be honest, I wanted to stay in it.

Onwards and Upwards

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

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.

Leah’s Birthday Barbecue

Our Leah has a really good friend called Leah R and this year for her 14th birthday she decided to have a big barbecue and invite lots of people.

 
She wanted the barbecue to be a celebration of our Leah’s life and she asked everyone to make a donation instead of bringing a birthday present. The money donated will be divided between three charities: Clic Sargent The Anthony Nolan Trust and the N.I. Children’s Hospice. She printed this account and handed it around at the barbecue:

 

Thankfully we were blessed with good weather. People young and not so young started arriving at her family home shortly after 4pm and most were left by 11pm. There was a steady trickle of people coming and going all evening and food, both savoury and sweet, was in abundance. There were many helpers, including the lovely Ferguson sisters and smiley Ben from New Zealand. There was a bouncy castle and sumo wrestler suits.

 

 
The young people played football and there was face-painting. Later in the evening the young ones toasted marshmallows and sang worship songs around the fire.

 

 
Some of us older ones got a bit chilly so we went inside and enjoyed good conversation and caught up with old friends as well as making new ones. Cups of tea and coffee were being continuously handed out while homemade cakes were passed around too.

Leah R’s parents, Owen and Lesley, constantly circulated, welcoming guests as they arrived, ensuring everyone got enough to eat and drink and that no one was left out. Approximately 120 people attended and over a thousand pounds was raised, to be divided between the three charities.

There were thank yous for everybody as they left –

 

 
When my husband and I were leaving we were given these beautiful flowers.

 

 
One of my Bible readings for today was
“Jesus went to them, walking on the sea. . . . And they cried out in fear.”
– Matthew 14:25-26 nkjv

It then goes on to say how the disciples were in the midst of a storm and because Jesus came to them in a way they weren’t expecting they almost didn’t recognise Him.

Grief is a storm too and sometimes the waves threaten to overwhelm me and I wonder if it really is possible to go on. I risk making the same mistake as those disciples, by not noticing how in the midst of my grief God has sent so many beautiful people to show His love to us as a family.

God’s lights in my dark night are so numerous and each one is exceedingly precious – how would we ever have survived this far without the loving support of the people He has placed in our lives?

A trip to a Bear Pit and a ride in an ambulance

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 House where accommodation was being provided for us by the Clic Sargent charity.

We went walkabout to try and get familiar with our surroundings. Leah had recently been presented with a gift of an iPad by L.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 Bear Pit”.

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.

10,000 Reasons

Yesterday, Wednesday the 23th April 2014, was my niece Charlotte’s wedding. Leah was to have been bridesmaid at this and she had been very excited about it. Leah had received the invitation to be bridesmaid while we were still in Bristol on Saturday 26th October 2013. We were busy packing our bags to fly home to Northern Ireland the next day, having spent 14 weeks there. I was with Leah when she was asked to be bridesmaid and I shared her excitement.

A few days before we left Bristol, my nephew, Leah’s cousin Daniel, had got married in Donegal in the same church as yesterday’s wedding.

Leah & I had looked forward very much to his wedding and it had been a focal point throughout Leah’s illness and treatment.

When Leah went to Bristol for her bone marrow transplant she had been assured that she would be home for Daniel’s wedding. There was hardly a day went by that we didn’t talk about this wedding and how much we were looking forward to being there and seeing all the family again.

However, due to complications of Leah’s transplant and the fact that she was very immune suppressed, Leah and I did not in fact attend Daniel & Jayne’s wedding in person. We were very disappointed about this. Instead we found a quiet corner in our Clic Sargent accommodation in Bristol and “attended” the wedding via FaceTime on Leah’s iPad.

For Leah, the thought of not only attending Charlotte and Jamie’s wedding in person, but also of being bridesmaid, was so amazing. Her only concern – would her hair have grown back? She didn’t want to have to wear her wig.

Charlotte and Jamie looked fantastic yesterday and my eldest daughter Rachel was stunningly beautiful as one of the three bridesmaids. The sun shone, the food was delicious and I was surrounded by friends and family.

It was also possibly the single most excruciatingly painful day that I have experienced since Leah’s death. My feelings of pain and loss seemed unrelenting and my tears felt like they were never going to end.

It wasn’t helped by the fact that yesterday was the anniversary of our first visit to Belfast City Hospital, the day when our haematologist told us all the awful stuff about Leah’s diagnosis and treatment. We were left reeling in shock and I remember thinking “It’s not just a bone marrow transplant my daughter needs – it’s a miracle.”

However, in my life of recent times I’m constantly aware of two threads running alongside each other. One is the almost overwhelming pain of my loss and grief for Leah. The other is God’s amazing and constant provision for me in my hour of need.

I feel sad but I also feel blessed – it’s kind of hard to explain……..

One of the hymns that was sung at the wedding service yesterday was the very same hymn that I posted on my Facebook page on that day one year ago when we were heading up to Belfast City Hospital – “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”

I was not just a relative I was her Mummy

Tuesday morning 14th January’14 found me sitting in my lovely room in the Cancer Centre at Belfast City Hospital.

Leah was going for a CT scan of her lungs.

The policies of the ICU did not permit relatives to accompany patients for these procedures.

My TYA (teenage & young adult) oncology nurse specialist came to see me in my room.

She said that she & my TYA Social Worker were concerned about some of the issues I was experiencing in ICU and the impact of these on my stress levels.

She said that she would speak to the nurse in charge on my behalf and wanted to know which issues I wanted addressed.

I explained that most of the nurses were brilliant and some of the doctors, especially the younger ones, were good at communicating with me – the problem was that how I fared on any given day depended on who was on duty.

I said that there was really only two issues that I wanted addressed.

One was the fact that when certain consultants were in charge I had to beg for information.

Whenever I was asked to leave ICU during Doctors rounds I would say to the nurse looking after Leah “Please ask the consultant to give me an update when he has finished his rounds.”

On more than one occasion this request elicited the following reply from a nurse “It is not the norm in this unit for doctors to speak to relatives on a daily basis.”

I told my TYA nurse that I NEVER wanted to hear that phrase again – the patient in the bed was 16 years old, she was just a child, I was not just a relative I was her mummy, she was dying and I didn’t care what the norm was in that unit – I wanted the opportunity to discuss my daughter’s medical condition with the doctor looking after her, on a daily basis.

The other issue I wanted raised was the amount of time I spent sitting outside ICU in the corridor, separated from my child.

I accepted that the policies of the unit meant that I was asked to leave for all sorts of reasons.

Most of the nurses kept this time as short as possible, but sometimes it seemed that the amount of time I was left sitting out in the corridor varied according to who was on duty.

My time with my critically ill child was so precious to me and I felt actual physical pain in my heart when forcibly separated from her.

I asked my TYA nurse to ask the staff to please keep separations as short as possible.

My TYA nurse was very understanding and went and spoke to the nurse in charge in ICU.

The particular nurse in charge that day was one of the kindest, gentlest people you could ever wish to meet and she was maybe a little taken aback to hear that a small minority of staff treated me very differently to how she treated me.

However, she took on board what was said.

Leah’s CT scan that day showed serious deterioration and we very quickly found ourselves discussing end of life plans, so the goal posts moved quite dramatically.

However, it was so important for me to know that I had professionals like my TYA Oncology Nurse Specialist & Clic Sargent SW who would listen to me, support me and advocate on my behalf.

It Was Worse Than Chemotherapy

It is a recognized fact that very high dose steroids (much higher than the dose that is normally used) can in some people trigger psychiatric problems and sometimes this can happen when the dose is being weaned.

Leah was on massive doses of steroids to treat her GVHD.

At first everything seemed fine.

Then at the end of September we got word that a baby had died suddenly on the transplant unit, three days before he was due for discharge home.

Leah adored children and prayed for each child on the transplant unit individually by name every day. After this baby’s death I noticed Leah’s mood plummeting – she became anxious, agitated, tearful and fixated on getting home.

On the Friday she told the BMT consultant that she wanted to speak to Dr C our senior consultant, as she wanted a date for booking our flights for home. We had been told the week previous that we could go home in 2 or 3 weeks. We were given an appointment with Dr C for Monday – we were staying in SAMs House the Clic Sargent hostel at this time.

Sunday night Leah started passing blood stained urine. During the night she was up every hour to use the toilet. In the morning I knew we should take an overnight bag with us to the hospital but I didn’t dare suggest this – I could tell that Leah was feeling very fragile.

We got to the hospital and Dr C told Leah the news that she didn’t want to hear – she had hemorrhagic cystitis most likely caused by BK polyoma virus in her bladder. This was an opportunistic infection, a complication of her bone marrow transplant. It isn’t one that clears up quickly.

Leah was readmitted to hospital but there was no available beds on the lovely adolescent ward. Instead she was sent to Cubicle 4 on the Bone Marrow Transplant Unit.

This was the room into which Leah was first admitted in July and from which she had very quickly requested an accommodation upgrade at that time.

It was small, pokey, lacked privacy and had no en-suite facilities – there was a commode in what resembled a cupboard in a corner of the room.

Leah was crushed, devastated, bewildered – she couldn’t believe this was happening to her.

Leah’s bladder was very inflamed – she had terrible bladder spasms which triggered some episodes of urinary incontinence as well – an awful experience for a young teenage girl.

She needed to use the toilet (commode) every 20-30 minutes.

Her mental state was in a downward spiral.

She couldn’t be left on her own.

Her distress was palpable.

At night I had to read to her for hours before she was able to fall asleep.

During the day if she saw me reading she would say “Read out loud please Mummy” – she couldn’t bear to be left alone with her thoughts.

On Wednesday the ward staff sent for the CAMHS nurse (Child & Adolescent Mental Health) – she insisted that a room be found for Leah on the Adolescent Ward on the basis of Leah’s mental health needs.

This certainly helped and was a great relief to both of us.

By Thursday Leah had got very little sleep for four nights and was in a bad place both mentally & physically.

It was decided that a bladder catheter should be inserted to drain the urine and enable Leah to get some sleep. This was done & Leah was given sedation.

However the bladder spasms were so severe that her bladder ejected the catheter with the balloon that was designed to keep it in place still fully inflated.

This now left Leah completely incontinent of urine & severely depressed.

She had to be referred to a CAMHS psychiatrist and a paediatric urologist.

She had to wear pull-ups by day and pull-ups and nappies at night as she was on a large volume of intravenous fluids.

Leah felt lower than at any other point in her illness.

There were days when she was allowed off the ward to go to SAMs House for a few hours and she wouldn’t go, because of how awful she felt about being incontinent.

She cried so many tears.

I cried too and I prayed and I hugged her and I held her hand and I snuggled beside her in her bed, but yet I felt powerless to alleviate the despair that was so evident in her eyes as she struggled with these very distressing symptoms.

Leah subsequently told me that having BK polyoma virus in her bladder was the worst part of her whole illness journey, worse than chemotherapy, worse than having her eggs harvested, worse than GVHD, worse than the pain of a collapsed disc, worse than anything.

The paediatric urology doctors were lovely and had great ideas and treatments for restoring bladder control.

Over a period of approximately 10 days things improved considerably.

Leah continued on medication and receiving help as an outpatient after she came home, as she still had some residual bladder weakness, but it was continually improving.

When Leah’s bladder symptoms started to improve, I started getting my daughter back again.

She was being discharged from hospital back to ‘Sam’s House’ & I was dispatched down the town with a list of what to buy as gifts for this one and that one.

Leah, my little planner, organised the packing while I was away shopping – how had we ended up with so much stuff in the hospital with us?

The presents we bought that day were just for the ward staff – we planned on doing home baking for the doctors.

A few nights later Leah produced another list & I was dispatched in the pitch-dark one night through the Royal Fort Gardens to the nearest Sainsbury’s, to buy ingredients for “fifteens” and “malteser squares”.

I have no sense of direction so Leah was amused and not at all surprised, when she heard that I had got my landmarks confused in the dark and added a few extra streets to my journey!

Maybe some of our Bristol friends will continue making “fifteens” in memory of Leah – they seemed truly fascinated with some of our Northern Irish customs such as the “tray bake mentality“!