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

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.

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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.

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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.

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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”.

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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.

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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.

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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.

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We left the hospital shortly after 6pm.

Leah, Miriam and I managed a quick bit of retail therapy in the fabulous flagship Primark Store.

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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.

I thought she was crazy to even ask the consultant to let her go

I thought she was crazy to even ask the consultant to let her go

This is the emblem of the N.I. Children’s Hospice. Last night was Leah’s High School Formal and every guest was given one of these badges to wear in remembrance of Leah.

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Leah had looked forward so much to going to her own school formal and was very excited about the fact that it was on St Valentine’s Day. The design of the badge seems so fitting for the occasion.

The formal Leah went to in November was her boyfriend’s formal. I thought Leah was crazy to even ask the consultant to let her go. We were just back from Bristol and her immunity was very low. Leah had spent months in isolation.

The haematology consultant looked into Leah’s pleading big brown eyes which were filled with tears. I reckon his head said no but his heart said yes – so yes it was.

Being immune suppressed meant that Leah couldn’t go into crowded places to look for a dress but we found some shops that were very quiet during late night opening. The young shop assistant who helped us choose Leah’s dress was very understanding – Leah had a Hickman central line in place and needed a dress that covered this.

Leah’s toe nails and finger nails had been badly affected by her illness and chemotherapy – she had developed Beau’s lines – so we needed to find a foot care specialist and a beautician who could attend to these.

Leah had never worn her wig (supplied by the Little Princess Trust) so we also needed to find someone local who could style this for her nearer the time. There seemed to be so many challenges in getting Cinderella ready for the ball but thankfully God blessed us with friends with talents and with good contacts.

By the week of the formal Leah’s toe nails were beautifully manicured and they remained so till the day she died.

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Leah wore false finger nails on the night.

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The morning of the formal Leah had a hair appointment at Roco in Derry where we were taken to the VIP suite and served hot chocolate with marshmallows – a treat Leah loved. Ronan, the proprietor, styled her hair (wig) and treated her like a princess.

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Next it was lunch, then off to the beauticians for Leah to get her makeup done. The time just seemed to fly – as soon as we got home it was time to help Leah get dressed. Then Nic was arriving and there was flowers and photos, laughter and excitement.

Our daughter was like any other young girl going to her first formal, excited and beautiful. I was like any other proud mammy, taking lots of photos and choosing the best ones to send to friends and family.

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The next day was Friday. Leah and I spent every Friday in the Bridgewater Suite of Belfast City Hospital. Bridgewater Suite is where haematology and oncology patients go.

As we arrived for our appointment that day my heart felt so heavy. I realized with crushing sadness that the bit where Leah was “just like any other teenage girl” was gone again. We were back to reality – our reality – a reality where my daughter was very sick.

I thank God for a doctor who made a decision from his heart and not his head and gave our daughter the opportunity to be a princess for a day.