10,000 Reasons

10,000 Reasons

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Yesterday, Wednesday the 23th April 2014, was my niece Charlotte’s wedding. Leah was to have been bridesmaid at this and she had been very excited about it. Leah had received the invitation to be bridesmaid while we were still in Bristol on Saturday 26th October 2013. We were busy packing our bags to fly home to Northern Ireland the next day, having spent 14 weeks there. I was with Leah when she was asked to be bridesmaid and I shared her excitement.

A few days before we left Bristol, my nephew, Leah’s cousin Daniel, had got married in Donegal in the same church as yesterday’s wedding.

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Leah & I had looked forward very much to his wedding and it had been a focal point throughout Leah’s illness and treatment.

When Leah went to Bristol for her bone marrow transplant she had been assured that she would be home for Daniel’s wedding. There was hardly a day went by that we didn’t talk about this wedding and how much we were looking forward to being there and seeing all the family again.

However, due to complications of Leah’s transplant and the fact that she was very immune suppressed, Leah and I did not in fact attend Daniel & Jayne’s wedding in person. We were very disappointed about this. Instead we found a quiet corner in our Clic Sargent accommodation in Bristol and “attended” the wedding via FaceTime on Leah’s iPad.

For Leah, the thought of not only attending Charlotte and Jamie’s wedding in person, but also of being bridesmaid, was so amazing. Her only concern – would her hair have grown back? She didn’t want to have to wear her wig.

Charlotte and Jamie looked fantastic yesterday and my eldest daughter Rachel was stunningly beautiful as one of the three bridesmaids. The sun shone, the food was delicious and I was surrounded by friends and family.

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It was also possibly the single most excruciatingly painful day that I have experienced since Leah’s death. My feelings of pain and loss seemed unrelenting and my tears felt like they were never going to end.

It wasn’t helped by the fact that yesterday was the anniversary of our first visit to Belfast City Hospital, the day when our haematologist told us all the awful stuff about Leah’s diagnosis and treatment. We were left reeling in shock and I remember thinking “It’s not just a bone marrow transplant my daughter needs – it’s a miracle.”

However, in my life of recent times I’m constantly aware of two threads running alongside each other. One is the almost overwhelming pain of my loss and grief for Leah. The other is God’s amazing and constant provision for me in my hour of need.

I feel sad but I also feel blessed – it’s kind of hard to explain……..

One of the hymns that was sung at the wedding service yesterday was the very same hymn that I posted on my Facebook page on that day one year ago when we were heading up to Belfast City Hospital – “10,000 Reasons” by Matt Redman

The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes
[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I’ll worship Your holy name”

A Phone Call Can Change Everything

A Phone Call Can Change Everything

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My name is Dr ….. and I work in Belfast City Hospital. Has anyone given you the results of Leah’s bone marrow biopsy?”

It was Friday afternoon the 19th April 2013. I had been sitting on my bed, typing up an assignment for a work related course that I was doing, when the phone rang. It was a withheld number and I had hesitated before answering, not wanting to be interrupted by yet another stranger’s voice trying to sell me a product that I neither wanted nor needed.

My heart started beating faster and breathing became more difficult. This was a stranger’s voice alright, and although he wasn’t trying to “sell” me anything, the news that he was delivering, was something that I neither “wanted nor needed”.

He told me that Leah had a type of bone marrow failure called myelodysplasia and that she needed a bone marrow transplant.

I asked him if he was a paediatric haematologist and he said no, that he was an adult haematologist.

So I said “Why are you ringing me then, Leah already has an adult haematologist who we like very much and we don’t want another one.”

He replied that he was also a transplant coordinator. I then said that we had been told that if anything sinister was found in our daughter’s bone marrow biopsy that she would immediately be transferred to the care of the paediatric haematologist at the Children’s Hospital in the Royal who had done the biopsy. Our daughter was only fifteen years old.

This doctor replied that she wasn’t available at the moment ( I found out later that she was on honeymoon but that there was other paediatric haematologists).

He went on to say that he wanted our whole family in his consulting rooms in Belfast on Monday.

I asked “Is my daughter’s medical condition so serious & so urgent that we have to come and see you so soon?” And he replied “Yes – but you can come on Tuesday if you prefer?

I then asked Leah if she would prefer to miss school on Monday or on Tuesday and she consulted her class timetable and said Tuesday, so Tuesday it was.

The reason Leah’s siblings were required was for “tissue typing” for a potential match for the bone marrow transplant.

Then he said “Miriam is only 9, she might be a bit young.” I told him that Miriam has very good understanding and she would most certainly want to be a part of anything that’s being done to help Leah.

I said “Please don’t make a difference in my children.” So he told me to bring all four of them.

I asked him where we had to go and he said “Well, you know where the Tower Block is at the City Hospital?” I was losing it at this stage and I said rather angrily through my tears “Why would I know where the Tower Block is? When in my entire life have I ever needed to know where your Tower Block is?”

He gave me more directions and the phone call ended.

Leah had been sitting beside me all this time, googling myelodysplasia and bone marrow transplant on her smart phone. That’s how she received her diagnosis.

I have to say, bad and all as that phone call may sound, it was wee buns compared to what we heard when we met the doctor face to face.

Nothing I read on the internet over the weekend was anywhere near as bad as what we were told when we got to that first appointment.

The phone call only told me that my daughter needed a bone marrow transplant and I knew very little about bone marrow transplants.

In that first appointment the doctor was so blunt about the implications of Leah’s diagnosis and consequently all the things that could go wrong before, during and after the transplant that we were left feeling that it was actually a miracle that Leah needed in order to survive! I write about this first appointment here.

It was a huge relief a week or so later when we got the phone call to say that Simon was a 10/10 bone marrow match as the Dr had said that if none of the siblings were a match then Leah would need a donor from the World Wide Registry.

He’d said that this could take up to 4 months and during the wait Leah’s disease could advance rapidly and her chances of survival could be greatly reduced.

A short while after this we also got word that Leah had been accepted by Bristol Children’s Hospital for transplant.

By then I knew that this was also good news as Bristol is a Centre of Excellence for treating rare blood diseases such as Leah’s and having her transplant there would greatly increase her chances of survival.

Gradually hope was being restored.

I have always loved the song “10,000 Reasons” by Matt Redman but it took on a special significance for me around the time of Leah’s diagnosis, especially the verse

The sun comes up; it’s a new day dawning
It’s time to sing Your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes”

For me the challenge each day was to be still singing when evening came.

In those early weeks and months after Leah was diagnosed I found it almost impossible to pray or read my Bible – I wasn’t angry with God, I have never felt a need to ask “Why?”

I just felt so overwhelmed by all that was happening and so numb with shock that the only way in which I could engage with God was through listening to worship music and singing along.

I haven’t a note in my head and can’t sing in tune to save my life, but I used to get on my own in the house or in the car and put on CDs of worship music and sing to God with all of my heart. This helped me to connect with God and feel His presence with me.