Thanks for the Bone Marrow bro!

Thanks for the Bone Marrow bro!

image

image

On Monday night 22nd July ’13 Horace and Simon flew into Bristol. At 8am Tuesday morning they reported to Oncology Day Beds at Bristol Children’s Hospital with Miriam in tow.

Simon needed blood tests and to be seen and examined by various doctors including a very good looking anaesthetic registrar from Newport – he provided an alternative and less depressing topic of conversation for us mummies for a few minutes after he left the room!
Horace went up to stay with Leah in the transplant unit and I came down to stay with Simon.

Simon went to theatre in the afternoon to have his bone marrow harvested from his hip bone under general anaesthetic. Simon was very good natured about everything and he never complained at all.

When I had said goodbye to Simon in theatre the nurse asked if I was upset and I said no, because I couldn’t begin to explain that I was much too upset to risk giving way to any emotion whatsoever. I felt that I had to keep a tight rein on my emotions lest they become like runaway horses and leave me completely undone.

When Simon returned from theatre he was transferred to their lovely purpose built Adolescent Ward. He was very drowsy but managed a smile whenever anyone spoke to him. The staff informed me that they were very pleased with the quality and quantity of the bone marrow harvested – I was so happy and relieved. This would now be frozen until Leah was ready to receive it.

In the meantime Leah was lying ill in the transplant unit with septicaemia. Around tea time when I had satisfied myself that Simon would be ok, I returned to Leah just in time to witness her having another rigor caused by her high temperatures. I called a nurse who immediately administered pethidine.

Around 10pm Simon managed tea and toast. He was discharged back to “SAMs House” in a taxi along with Horace and Miriam around 11pm. I think Simon took paracetamol at some stage but he didn’t complain much.

On Wednesday evening Horace and Simon flew home and my niece arrived from London to look after Miriam. On Thursday Miriam went to stay with my brother and his family in Cambridge for a week and then travelled back to Ireland with them.

Today I discovered this song on my iPad playlist and it brought me comfort:

SELAH – PART THE WATERS / I NEED THEE EVERY HOUR 

When I think I’m going under, part the waters, Lord
When I feel the waves around me, calm the sea
When I cry for help, oh, hear me
Lord and hold out Your hand
Touch my life
Still the raging storm in me

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 actually 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.

1374653371765

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:
image

AFTER:
image

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

image

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.”

Hot salty tears ran down my face as 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.”