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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Our New Normal

Our New Normal

Miriam has been “croaky” all week & was up last night at 3am with a sore throat and a temperature of 40.6C. Today she just lay in bed – very unusual for her – and complained of soreness when breathing. Even after Nurofen her temperature was 39.1C.
Have any of my kids been as sick as this before? YES!
Did I ring the doctor? NO!
Today I rang the GP, got an appointment, took Miriam to be examined and got antibiotics. In the past I resisted having my kids being put on antibiotics in these circumstances and preferred to adopt a “wait and see” approach.
I used to rear my kids on the principle “They’ll be fine – give them a spoon of Calpol and send them on.” Sadly I can’t do that anymore – bad things do happen to people like me.
In my grief, not only am I having to learn to live with the loss of Leah but there’s also the realisation of how that loss impacts on our lives in so many different ways. There’s a new normal that is gradually unfolding in our lives as we explore what it means to live in the shadow of Leah’s illness and death. I continue to trust God and believe in His Sovereignty and loving kindness, but the lens through which I view life has altered – nothing can ever again be the same.

A friend sent me this beautiful song today.

“There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He’ll meet you wherever you are
Cry out to Jesus, Cry out to Jesus”