From Bristol to Belfast

From Bristol to Belfast

On Sunday 27th October Leah and I finally escaped from Bristol and returned to Ireland. We had spent 14 weeks in Bristol, much longer than the 6-8 weeks that we had originally anticipated.

Horace flew over on the Friday night in order to accompany us on the flight home, as Leah was weak and unwell.

The seasons had changed – we had left Ireland during an amazing heatwave and we were now returning in the frosty darkness of winter.

We had changed too, we had arrived in Bristol on a warm July Sunday, full of hope and optimism, with just a little bit of fear.

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However, now our hearts – and Leah’s body – were battered and worn.

Years ago I used to watch every episode of “Children’s Hospital” on TV but eventually I had to stop, as it all became too much for me emotionally.

Living on the wards of Bristol Children’s Hospital with Leah, felt at times like being stuck in a never ending episode of “Children’s Hospital“, from which there was no escape.

So many sick children.

So many sad stories.

So many broken hearted parents putting on brave faces.

Our final fortnight in Bristol proved to be a nail biting finish.

Leah’s blood platelets  were consistently dropping and her consultant was worried that she was relapsing and would need a second bone marrow transplant.

Thankfully a bone marrow biopsy  on the 16th October revealed healthy bone marrow.

The doctor said that she might need a CD34 selection top up  at some later stage, if her blood counts didn’t come up, but we didn’t need to worry about that yet.

Leah was discharged from hospital back to Sams House, our Clic Sargent  accommodation.

We were told that at long last we could plan our return flights home.

Then, on Monday 21st October, just as we were booking our flights home, Leah developed a “line related” blood clot and was once again readmitted to Cubicle 4, the hospital room that we so disliked, on the Bone Marrow Transplant Unit.

The prominent veins were the clue that something was amiss.
The prominent veins were the clue that something was amiss.

Leah required a blood platelet transfusion at this stage as her platelets had dropped to 47 and a normal platelet count is above 150.

The doctor on duty could offer no reassurance that we would still be going home the following Sunday as planned.

I remember feeling stunned and numb and thinking “This just can’t be happening.”

The staff on the Transplant Unit seemed as shocked and upset about our circumstances as we were.

Webster, one of the healthcare assistants, made me my favourite cheese on toast, as I hadn’t eaten all day. I don’t know what his secret ingredient is, but he makes the most amazing cheese on toast.

Leah browsed their menu and ordered something more substantial, but cheese on toast is one of my comfort foods.

The night nurse on duty wouldn’t hear tell of me walking to the Clic Sargent House in the dark to get our bags for staying overnight. She ordered a taxi to take me there and back.

I hugged Leah tight then reluctantly left her alone in her isolation room, while I once more went and packed our bags for a hospital stay.

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The next day it was decided that Leah could be discharged from hospital on daily anticoagulant injections.

We could fly home at the weekend but we had to attend Oncology Day Beds every day for the rest of that week for monitoring of Leah’s medical condition.

It was a busy week.

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Two days before we were due to fly, Leah developed chest pain.

She had to have an ECG, a chest X-ray and an emergency CT scan.

Everything hung in the balance.

Eventually Leah got clearance to fly home – such relief.

Leah had baked fifteens  for the Doctors and staff in Oncology Day Beds to say goodbye and thank you.

We got lots of warm hugs from the members of the team that we had grown especially close to.

I can tell you that two people were never as happy to see a “Welcome to Belfast” sign as Leah and I were on Sunday afternoon 27th October 2013.

I couldn’t stop crying – my emotions were all over the place!

Our eldest daughter was at the airport to welcome us.

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Although I was desperate to get home and see everybody, I had some very mixed emotions.

I was acutely aware of just how unwell my daughter was.

I was excited about returning to Ireland and being reunited with friends and family, but I was nervous about leaving the care of Bristol Children’s Hospital.

In Bristol we were surrounded by families who were walking a similar journey to us and we could support one another.

Back home Leah was cared for in adult services so I had no contact whatsoever with other parents or families and therefore no informal means of peer support.

I couldn’t remember what normality felt like, nothing in life seemed familiar anymore, I was scared.

Leah couldn’t return to the house that we used to live in due to dampness and mould. Our new house wasn’t ready yet.

Leah’s Auntie E lives in Belfast and very kindly invited Leah and I to stay with her for a fortnight.

This seemed like a very good idea as it also meant that we were adjacent to Belfast City Hospital, where Leah’s post transplant recovery would be monitored.

Once we returned to our own home we would be 70 miles from the hospital.

Leah’s diagnosis of myelodysplasia with monosomy 7 was very rare.

Her particular variant of a Gata2 gene mutation was even rarer.

Bristol Children’s Hospital was where all of this was well understood.

I had developed such trust and respect for the staff in Bristol, I didn’t know if I could ever learn to trust the staff of another hospital in the same way.

Leah was being cared for in Children’s Services in Bristol.

Back home in N. Ireland she received her care in Adult’s Services and that felt very different.

We had our first return appointment at the Bridgewater Suite  at Belfast City Hospital on Tuesday 29th October 2013.

Leah and I were both tearful and emotionally fragile.

We were used to the small intimate environment of the Paediatric Oncology Day Beds in Bristol, where everyone knew us and decorated cardboard cutouts of Gromit hung from the ceiling.

Where the smiling Play Therapist was on hand with interesting activities to distract and everything seemed geared to meet the needs of children, young people and their parents.

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Bridgewater Suite in Belfast City Hospital on a Tuesday morning is crazy – there are patients waiting everywhere – it’s like a cattle mart.

Although the waiting area is extensive, it’s still not big enough, so some patients even sat on the window sills. We felt overwhelmed.

A single room was quickly found for us thankfully, as Leah wasn’t supposed to be mixing with crowds, due to her weakened immunity.

Our Clic Sargent SW and our TYA cancer nurse specialist  came to see us, we were glad to see them again.

Everyone who knew us was so warm and welcoming.

They couldn’t change the physical environment, but they did everything that they could do to support Leah emotionally and to make things better for both her and me.

Muriel, a Presbyterian deaconess  who provides chaplaincy at the hospital, changed her day off that week, so as to be there to meet us and pray with us. We appreciated that so very much.

Our consultant was really nice and very caring, as was the lovely nurse who accompanied him.

Over time, Leah was also allocated a Physiotherapist and an Occupational Therapist.

New relationships were formed and trust began to be established.

For the remainder of Leah’s short life, every Friday was spent at the Bridgewater Suite at Belfast City Hospital, where she received excellent care and attention.

During the two weeks that we stayed with Auntie E some fun times were had too.

We sat around her kitchen table and played Cluedo  and Uno.

I kept winning at Cluedo and they accused me of cheating!

I wasn’t cheating – the two of them were busy chatting while I was very focussed and concentrating on the game!

Leah was very close to her Auntie E and loved her company.

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We usually got a taxi back to Auntie E’s house after our hospital appointments, this cost approximately £10.

On one of these occasions, when we arrived at our destination, the taxi driver switched off the meter and refused to accepted any money.

Leah’s chemotherapy hair loss had given him a clue to her illness and he had learned a bit more of her story as we chatted along the way.

To be honest, the kindness shown to us by this total stranger cheered and encouraged our hearts way over and above the monetary value of the £10 that we saved, although we appreciated that too.

At weekends Leah’s boyfriend Nic travelled up by train to visit her.

When he was leaving we always walked with him to the train station, then Leah and I walked back together.

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Leah was weak and couldn’t walk far.

The shortest way back was via an unlit, lonely, isolated path.

My mobile phone was fairly new and I didn’t realise that there was a torch on it.

Leah and I used to walk this path together, arms linked, in total darkness, surrounded by bushes on either side.

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I used to be terrified, but tried not to show it.

I silently wondered if anyone would hear us if we’d screamed.

Sometimes the bushes would rustle and I would startle and Leah would say “Mummy don’t you tense up, because you’re making me scared.”

So then I would have to consciously relax my body, and control my breathing, to keep Leah from sensing my fear.

I was always so relieved when we reached the end of this lonely path and I could see the welcoming street lights.

In many ways our walk on this path was a metaphor for this whole illness journey that Leah and I walked so closely together.

I had to rely on God for the strength that enabled me to control my fears and emotions. It was vitally important that I remained calm and unruffled on the outside, so that my daughter didn’t sense the fears that I carried deep down inside, regarding her illness and its implications.

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2 thoughts on “From Bristol to Belfast

  1. Oh Victoria, I feel you here with me now. I am struggling to hold it together as we await more answers. Colin returned home from Ireland with a platelet count of 3k, that was over a month ago and today despite a round of Rituxan and steroids (involves a month of chemo) his count is 4k. I wait and wait for more answers that I am not sure I want. I am scared, holding my breath and trying to stay strong for Colin. I just barely manage to keep it together and I am so frightened for my son, honestly for myself as well. He is home on strict bed rest while we wait for further instruction. It is so very long this road, I just wish for another way to go.

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  2. Oh Amy, I wish there was some other way, this is surely not the script that we ever wrote for our lives. I will continue to pray for health and strength for you and Colin and your family. Sending you hugs 💕

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