Safe in my Father’s House

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.” 2 Samuel 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.

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.

The Highs and Lows of Caring

I was reflecting this morning on my role as Leah’s main carer for the last year of her life. For our loss of Leah is not just one loss, it comprises many separate losses that come together to make up the whole loss.

I miss caring for Leah.

My first experience of caring for Leah 24/7 was when she was admitted to our local oncology/haematology ward in February 2013 and subsequently had an appendicectomy.

I adapted to my role as carer quickly and easily. I recorded in my diary that Leah “is so uncomplaining and is at all times thoughtful and considerate.”

I took one more day off after Leah came out of hospital and then I returned to work and left her in the care of her devoted daddy. Horace says that no matter what wee thing he did for her, even if it was just picking up a page of school work that had fallen to the ground, her immediate response was “thank you daddy”.

Leah stayed off school for a week after she got out of hospital, but studied every day, while playing her favourite music, especially 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”

Horace says that the two lines “Whatever may pass, and whatever lies before me, Let me be singing when the evening comes” really affected him at that time. Although Leah was undiagnosed, he was quite convinced that this wasn’t the end of the story. On hearing the words of this song he became overwhelmed with emotion and had to leave the room and go outside so as not to cause Leah any anxiety or distress.

When Leah was diagnosed in April ’13 I tried to continue working, but it quickly became apparent that Leah was going to need me at home full-time.

I love my work and initially I missed the “escape” that work provides. However I soon settled into my new role of accompanying Leah to her many appointments and providing her with emotional support.

Once we got to Bristol, my input became “hands on”. Leah gradually became too weak and ill to do anything for herself. She needed me to help her to the toilet, wash her in the shower, dry her, dress her, put cream on her face, help her with mouth care etc. Leah was very good natured and I loved caring for her.

Only once during our time in Bristol did Leah get annoyed with me, it was in October and it was regarding her GCSEs. We were working together on an email to send to her school about the help she would need in order to catch up with her studies on her return home. Leah studied as best she could, while in Bristol, with the help of the lovely hospital teachers, whom we both adored.

However Leah was very stressed about how far behind she was with her studies and she wanted me to put a lot of this detail in the email to the school. I felt that at this stage her school just needed an outline of the basic facts, like what date we were likely to be home and when she needed the home tuition to start.

I then wouldn’t send the email because we weren’t in agreement. Leah accused me of not understanding how far behind she was with her studies and how important her school work was to her. She stormed out of Sam’s House and headed into the Royal Fort Gardens next door.

This left me in a total quandary as her carer. I appreciated that Leah needed some space and cooling off time. She was 15 years old and needed a break from her mother’s constant presence. I was also very aware that she was quite weak and ill.

High dose steroids had left Leah with severe muscle weakness – if she tripped and fell she would have been unable to get up again. It was also starting to get dark. After 50 minutes of anxiously praying for her safety, I went after her and silently escorted her back to our bedroom at SAMs.

Thankfully the X Factor was just starting and she loved that programme.

By the time the X Factor was over, Leah had calmed down. At bedtime she wanted me to tuck her in and kiss her goodnight like every other night. This endearing bedtime ritual had started shortly after we arrived in Bristol.

Sometimes I would be exhausted and I would forget and get into bed without tucking her in and kissing her. Then I would look over and Leah’s big doe eyes would gaze reproachfully at me from across the room. I would get straight back out of bed and pad over and kiss that smooth bald head and tuck her in with the furry blanket brought from home and tell her once again how much I loved her.

By the time we returned to Ireland after 14 weeks in Bristol, I was emotionally depleted. I loved looking after Leah, but I had put many of my own needs on hold and now they were clamouring for attention.

Once I arrived home, after an absence of almost four months, the needs of my family, my domestic responsibilities and a small mountain of mail also clamoured for attention.

Our Clic Sargent Social Worker advised me to do a self referral to Action Cancer for counselling and that was an excellent piece of advice.

I received an appointment almost immediately and I’m still attending. The support has been invaluable. I’ve also received a course of aromatherapy massage appointments from Action Cancer.

The latter have helped my sleeping pattern, which was very useful, as I’m very reluctant to take any medication for sleep or mood. I’m already on very strong daily medication to control my migraine and I feel that’s enough for my body to cope with.

In December ’13 I was summonsed to a work related meeting to look at the feasibility of me returning to my job. A provisional date in March 2014, pending an Occupational Health interview in January ’14 was agreed upon, for me to return to work.

I’m the primary bread winner but I wondered how I was going to combine my caring responsibilities with working, even though my basic contract is only part-time. Leah’s consultant assured me that Leah was getting better and would hopefully be returning to school in March 2014. I wasn’t convinced.

I’m now returning to work part time in September 2014. I’m very pleased to be returning to work – and I’m looking forward to it – but I somehow never imagined it would be under these circumstances.

As a nurse, I have worked over the years in the areas of mental health, learning disability, physical disability, special needs and with children who have life limiting conditions. I have had a lot of contact with parents who are carers. Some of them have cared for many years for children and young people who are very severely disabled.

Nevertheless I don’t think that I ever really understood the emotional complexity of being a mum whose child needs 24/7 care, until I experienced the situation first hand.

On the one hand there is the exhaustion that comes from caring for someone 24/7. Then there’s the guilt that comes from knowing that you are neglecting, or at the very least short changing, your husband/partner and your other children.

If you aren’t looking after your ill or disabled child, you are probably thinking about them, talking about them, shopping for them, or else catching up on your sleep.

On the other hand, there is the total and utter love and devotion that you feel for your ill/disabled child or young person. There’s the closeness, the bond, the tenderness, that develops between the two of you. It doesn’t matter how much help they need – you carried them in your womb, you gave birth to them and you love them unconditionally, in a way that only a Mother can.

So although at times I did struggle with the 24/7 commitment of being Leah’s carer, I really miss the extraordinary closeness that we shared because of that.

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“!

Girls just want to have fun.

In many ways Leah’s experience of our 14 weeks in Bristol was quite different to mine.

For starters she spent much of it in isolation – either on the bone marrow transplant unit or in her ensuite room on the beautiful purpose built Adolescent Ward.

Her room was lovely but her world was very small.

My world was much bigger.

When Nic was over visiting Leah, I was “off duty” by day and able to explore Bristol on foot – a very beautiful City.

One day I was heading to Za Za Bazaar for lunch with my sister, when we happened upon a very old church built into the remains of Bristol’s City Walls.

This Church of St John the Baptist was open to the public and we went inside and got chatting to the two volunteers who were manning it that day.

As soon as they heard about Leah they offered to pray with me for her on the spot – it was a very precious moment.

A subsequent visit to google elicited the information that this church was “built in the 14th century as a place for travelers to offer prayers before a journey“.

Another obvious difference between Leah’s experience and mine was that she was often very ill – symptoms of her illness, side-effects of treatment, complications of transplant etc.

Leah had nausea, frequent vomiting, fever, rigors, nose bleeds, mucositis, diarrhea, hemorrhagic cystitis, urgency, frequency, incontinence, insomnia, bone pain, joint pain, muscle pain, skin rashes, tiredness and weakness, though thankfully not all of these occurred simultaneously.

The isolation made Leah very home sick and she pined for friends and family.

I also missed friends and family, but at the same time I benefited greatly from making friends with other parents in a similar situation.

Because Leah had always been treated through the adult services at home I didn’t have any contact with other oncology mums in Ireland.

I made deep and lasting friendships in Bristol with some amazing people. When Leah was subsequently in ICU in Belfast & critically ill, I received beautiful heartfelt messages of support from these parents, in a real outpouring of love.

However the best thing about Bristol for me was that I was completely released from all the other responsibilities and concerns in my life and had only one concern every day when I woke – Leah.

Now that Leah is no longer here, I thank God that for those 14 weeks when I had no distractions, no domestic responsibilities, no housework, nothing other than the care of my beautiful but sick daughter.

In the midst of it all are some very happy memories.

There’s the week in early September when we knew her transplant was successful but the post transplant complications hadn’t yet set in and we had the “sneaky” trip out of hospital to Bristol’s flagship Primark store.

Leah spied the Costa cafe in store and pleaded successfully with me to let her have a drink and a bun – we must have broken every post transplant rule in one fell swoop – I was really panicking, but what could I do – girls just want to have fun!

There was the warm September evenings after the shops were closed when we walked down town from the hospital to see the Gromits and had to get a taxi back because Leah’s legs wouldn’t carry her any further.

When our consultant found out he sternly reprimanded us and said that for her own safety Leah needed to live in self-imposed exile – I knew he meant well so we behaved ourselves after that wee “break-out”!

There were the many good times in SAM’s House spent baking buns & tray bakes & just hanging out with other families.

There’s the beautiful Royal Fort Gardens beside SAMs House where Leah & I regularly walked & sat on a bench to chat or text.

We used to sit really still just to see how close the grey squirrels would come, then Leah would try to photograph them because she thought they were so cute.

At one stage the DVD player in Leah’s hospital room didn’t work so the support worker from the Teenage Cancer Trust brought us a portable DVD player.

We ordered films online that we both liked. 

At night we would snuggle up together in her hospital bed to watch them, while munching through a bag of Galaxy Minstrels.

Then there were the visits from family or friends – these were very eagerly awaited events.

Depending on where we were, most visitors got a guided tour of either SAMs House or the Adolescent Ward, with as much pride as if they were being shown around our own house – it was, after all, our “home” even if only temporary.

On Sundays, if we had stayed overnight in SAMs House, Leah would have a lie on while I went to a brilliant church called Pip n Jay.

When I got back from church we would cook dinner together – usually sirloin steak – I had black pepper sauce and she had gravy. We would have potato croquettes and roast potatoes, vegetables and lots of Yorkshire puddings. Ice-cream was usually on the dessert menu.

Afterwards she washed and I dried. Leah loved her food and when she was well enough to eat, I just wanted everything to be really tasty.

When Leah was in hospital she would send me to Starbucks for a peach and mango frappuccino or to M&S for a particular milkshake we both liked or for a wee tub of Ben & Jerry’s ice cream from Tesco or some frozen yogurt from Sainsbury’s.

I loved the fresh air and exercise and the chance to see around me that came with these shopping excursions.

For our last few weeks in Bristol the post transplant prohibition on takeaway food was lifted so we had treats like Domino’s pizza one day or a Chinese takeaway another.

Because I only had Leah to think about, her wish was well and truly my command, and that, for both of us, was such a blessing.