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.
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.
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.
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 6-7 “Be 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.”