Meet Mr Wiggly

Meet Mr Wiggly

Early on Monday 1st July 2013 Leah was admitted to the Cancer Centre in Belfast City Hospital for a repeat bone marrow biopsy and to have a double lumen Hickman central line (Mr Wiggly) inserted.

It was Leah’s first admission to BCH and she had a spacious ensuite single room, with a folding camp bed for me. There was a steady stream of professionals in and out of her room and everyone was absolutely lovely. We were really well looked after.

 

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By early evening Leah was well recovered from her anaesthetic but still had enough pain relief in her to keep her comfortable.

Leah loved her food and was feeling peckish, although she’d had her tea. By the time I had organised myself to go looking for a shop, the hospital shop was closed, so I walked down the Lisburn Road until I found a wee corner shop that was open.

I had left Leah happily “snap chatting” her friends on her new iPad. I brought her back an ice cream, a fizzy drink, a bar of chocolate and a muffin.

Leah was delighted and probably amazed that her mother would voluntarily buy her so much rubbishy food. However, as a nurse myself, I was well aware of what the near future held for Leah in terms of chemotherapy and side effects and a “clean diet”.

I was just glad to be able to do something “normal” like walk to a corner shop and buy her treats.

 

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The next day the doctor told us that the initial tests on Leah’s bone marrow aspirate showed no significant increase in the number of abnormal cells. This was absolutely fantastic news as myelodysplasia has the potential to rapidly transform into an aggressive form of acute myeloid leukaemia.

He said that they would be sending samples from her bone marrow biopsy to Bristol for further testing. It was September before I discovered that these further tests in Bristol had showed sinister and worrying changes in Leah’s bone marrow.

At the time though, I didn’t ask and wasn’t told, for which I am grateful, sometimes there’s a limit to how much bad news anybody can cope with.

Leah was discharged from hospital late afternoon on the Tuesday, with a very sore neck.

On the Tuesday morning Leah met Muriel for the first time, she’s the Presbyterian deaconess who provides pastoral support at BCH. Leah and I loved her instantly. The pastoral support from the chaplaincy team at the City Hospital is excellent. When Leah was very ill in ICU in January ’14 we very much appreciated all the pastoral support that we received, Leah just loved to be prayed with.

For the next few days Leah found the whole area around the insertion site of her Hickman line very tender and painful and she needed lots of pain relief.

We had begun the path of the “new normal” – invasive procedures and medication and side effects and more medication to counteract the side effects and so on and so forth.

 

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Our local community in Eglinton/Greysteel/Limavady held a fundraising evening for Leah on Saturday 29th June ’13. This was organised, almost single handedly, by a local woman called Margaret Moore who is blind.

It was very well supported by our neighbours, friends, relatives, local clergy and political representatives. Local businesses were generous in their donations. Leah was presented with a generous cheque. We appreciated not only the money, but also everybody’s friendship and kindness.

Shortly before this, our church, Kilfennan Presbyterian, had organised a “Prayer and Pudding Evening” in support of Leah. Over a hundred people, young and old, came to show their support for Leah.

There was an opportunity for private and group prayer. Many left financial gifts. There was also pen and paper to write a message or a prayer for Leah and post it in a box. Our church family worker then collated all of these into a beautiful book of encouragement for Leah to take to Bristol with her.

 

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Our church printed prayer cards for Leah and 1,500 hard copies of these were distributed and many more were distributed online and printed off.
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The clock was ticking. Now we just had to wait for Bristol Children’s Hospital to ring with a date for Leah’s admission for her bone marrow transplant.

The sooner, the better, we thought, so that we could get Leah’s treatment over and done with and all of our lives could return to normal.

Leah looked the picture of health, she had the most amazing doctors looking after her and thousands of people were praying for her. What could possibly go wrong? That’s where my thought processes were in July 2013.

I have since learned that not all people who are ill and dying actually look like they are ill and dying. I still think that Leah’s doctors are amazing – they did everything in their power to save her life.

Thousands of people prayed for Leah’s healing and I’m grateful to everyone who prayed and I don’t have answers or explanations, some things in life are a mystery.

I continue to believe in a God of love who had a perfect plan for Leah’s life and who has a perfect plan for mine too, although right now that plan feels anything but perfect.

 

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Maybe the real miracle of healing is the one that takes place in our hearts

Maybe the real miracle of healing is the one that takes place in our hearts

As we rang the bell on arrival at the bone marrow transplant unit that first Monday morning 22nd July 2013 Leah told me she had a headache – I thought it was due to all the stress of travelling.

We were shown into cubicle 4 and we waited for the doctor to arrive. Leah said she felt tired so I suggested that she lie down, then she said that she felt cold so I put a blanket over her, then another blanket.

Then she started shaking violently – she was having a rigor and we were suddenly in the middle of a full blown medical emergency.

The nurses on BMT were well trained and within minutes Leah had received pethidine and was getting intravenous antibiotics.

Leah had septicaemia…….and she had almost no immune system with which to fight it.

Although I had been told many times how ill my daughter was, I had always managed to push it to the back of my mind.

Leah looked so well – was it really possible that someone who looked so well could really be so ill?

There were hundreds, probably thousands praying for Leah, surely we would go to Bristol, she would sail through her treatment and we would be back home in no time at all.

However here I was in Bristol, far from home, Leah and I were in isolation in the Bone Marrow Transplant Unit and she was getting sicker and sicker.

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By Sunday 28th July Leah had not one but five different – mostly “gram negative” – bacteria growing in her bloodstream. “A zoo of bacteria” the doctor had called it.

Her all important Hickman central line had to come out. She had to have canulas inserted in both arms – she hated canulas and she almost always got phlebitis from them.

We were both devastated & we sat in stunned silence. I could hardly look at Leah that Sunday morning because I didn’t want her to see the pain and confusion in my eyes – it wasn’t supposed to be like this – not when so many people were praying for us.

BEFORE:
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AFTER:
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I wanted so desperately to cry or scream, or both, but how could I?

I was my child’s sole carer – I had to hold it together for her sake.

I felt like I was drowning in a sea of unexpressed emotion.

I felt so alone during those early weeks on the transplant unit, the unit was short staffed so the nurses were very busy and rarely had time to talk.

At that time there was extra infection control measures in place and there was temporarily no parents room so I had very limited contact with other parents – we were in lockdown.

Two weeks previous Leah & I had been at Portstewart Convention, laughing & chatting, surrounded by friends. Now here we were in Bristol, surrounded by strangers and there was no opportunity to laugh or chat with others.

Visiting was restricted in the Transplant Unit. Leah was allowed three named carers – these were myself, Horace (her dad) and Nic (her boyfriend), but neither of them were in Bristol.

Nic was arriving for her third week and we couldn’t wait.

On his first day he filmed me shaving Leah’s head, as her hair was coming out in clumps.

On Nic’s second day I wandered down town in a daze, unused to this freedom. I discovered a beautifully restored Methodist Church in the middle of the shopping precinct, built in 1739.

Wesley’s New Room

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I went in and looked around. There was a quiet area with a Bible for people to pray and read.

I sat there and wept and silently cried out to God “I never knew it was going to be this hard.”

I spent time there in the quiet stillness.

The smell of oldness and wooden pews was a welcome contrast to the smell of the actichlor that was used to clean everything on BMT.

I picked up the Bible and turned to Philippians and read chapter 4 verses 6-7Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

I felt the peace of God flow over me, I still felt weak but I could feel His strength in my weakness.

I left that Methodist Chapel with my soul somewhat restored.

I wrote the following in my diary around that time “Maybe the real miracle of healing is the one that takes place in our hearts and enables us to cope with our situation.”

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.