The Unthinkable Happens

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 Bar American 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:

Worn
By Tenth Avenue North

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

Though I’m worn
Yeah I’m worn

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.