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.

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:

AFTER:

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

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.”

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.”

Praying for a miracle?

I found this really helpful essay on praying for miracles…….

“It is one thing to be asked to pray for another person. I’m happy to do it. I want to do it. I must admit, though, I am not always faithful to do it. However, it is another thing to be told what to ask God for in the situation. I’ve noticed that often requests for prayer come with specific instructions on how to pray. I call it a “please pray for my predetermined positive outcome” request.
And while I’m questioning our accepted methods of requesting prayer, I’ve got to ask, why do we seem to make it our goal to get as many people as possible praying toward our predetermined positive outcome? Is it that we think God is resistant to doing what is good and right but can be pressured by a large number of people to relent and deliver? Do we think that the more people we recruit to pray for the same thing will prove our sincerity or improve our odds?”

Click here to read more Praying Past our Preferred Outcomes

How could we ever have let her die in an “unplanned” kind of a way

Today I was in town and found myself with a bit of unexpected spare time, so on a sudden impulse I headed into the Health Center and climbed the two sets of stairs to my work place – somewhere that I hadn’t visited since July ’13 before going to Bristol for Leah’s bone marrow transplant.

There wasn’t many in the office but it was absolutely lovely to see and chat to some of my work colleagues. It reminded me of a world beyond my grief.

Something else very nice happened while I was in at work – I unexpectedly got to see and hug Dr H, the specialist in paediatric palliative care who enabled Leah’s transfer from ICU to the N.I. Children’s Hospice.

On Monday 13th January 2014 I finally accepted that Leah was not getting the miracle of healing that so very many of us were hoping and praying for.

I asked the staff in Belfast City Hospital what our options were for Leah’s end of life care – apparently we didn’t have any options, she would die in ICU.

I said that I didn’t want her dying in a critical care environment and that I wanted to take her home or to the N.I. Children’s Hospice but I was told that neither was possible.

I was distraught on two counts – one because my child was dying and two because I felt that I was being denied the option of planning a peaceful and dignified death for my child, surrounded by those who loved her.

As a student nurse in the early ’80s I formed quite strong views in favour of hospice care. I also at that time read TO LIVE UNTIL WE SAY GOOD BYE by Elizabeth Kubler Ross. The writings of Elizabeth Kubler Ross introduced me to the concept of ‘end of life care’ and confirmed my thinking that end of life care should, wherever possible, be planned and dignified, both for the benefit of the person dying and also for those who will be left to grieve.

On Tuesday 14th January, through my own personal work contacts I was put in touch with Dr H. She immediately offered to drive the 140 mile round trip to BCH to convince the staff there that we as a family did have options, that it was indeed possible and safe for Leah to be transferred to the N.I. Children’s Hospice when the time was right.

Dr H knew how this could be arranged and she had all the names and phone numbers of those who needed to be contacted so that it could be arranged.

Once Dr H had outlined to the staff at BCH what was possible, all the pieces of the jigsaw started falling into place. From that moment on, the staff in BCH did everything they could to support our choice and to make it happen.

The particular doctor from the Royal who normally did  transfers to the hospice was not available on Thursday 16th January when we needed him, but the lovely ICU doctor from Cork volunteered to give up his morning off to come with us.

One of our favourite nurses said she would come too. By Thursday morning Leah was too ill to survive being changed over to the portable ventilator, so the Cork Dr calmly said that we would just bring the big ICU ventilator with us – it was apparently unheard of for a patient to leave ICU on anything other than a portable ventilator.

When the emergency ambulance arrived to take us to the Hospice they could see straight away that Leah and all of her medical equipment wouldn’t fit in their ambulance – without any fuss they ordered a bigger patient transport ambulance to come.

Leah, the medical staff and myself all traveled in the transport ambulance while the emergency ambulance blue-lighted us across Belfast.

Normally during the day in her room in ICU Leah’s Spotify playlist played continuously on her iPad. At night I asked the nurses to keep the music off to help Leah differentiate between day and night, as that distinction isn’t obvious in an ICU environment.

On her last night in ICU Leah was being looked after by a lovely nurse who belonged to a church in Ballymena. I asked her to play Leah’s Christian music during the night because this was to be her last night on earth. I was in and out during the night but I did manage to sleep a couple of hours in my room in the Cancer Centre.

When I returned in the early morning the nurse told me that she had picked out the best songs for Leah to listen to and then added “I sang to her too” – my heart just melted when she told me this.

Then I turned over Leah’s own desk calendar onto that days date and read the verse for that day which was 1 Corinthians 14:40 “Let all things be done decently and in order“. Leah was very much a “planner” – she loved to be organised and wrote lists for everything – how could we ever have let her die in an “unplanned” kind of a way?

Through my tears I uttered a quiet “thank you Lord, I truly know that Your hand is upon us this day“.

When we arrived at the hospice there was approximately 35 family and very close friends of all ages waiting to welcome us.

The medical staff settled Leah into her very pretty room with her name on the door. Then friends and family had time to say goodbye. The Hospice staff introduced themselves to us, then remained discretely in the background, always ready when we needed them.

It was like a big family get together albeit a very sad one. Leah absolutely loved big family get togethers.

Children who didn’t want to be in Leah’s room all the time, had access to a games room, hospice staff had an oversight to all that was going on.

After Leah had died in a peaceful and dignified manner, the hospice staff provided lunch for everyone – there was no need for anyone to rush away – everyone was able to deal with the situation at their own pace and the hospice staff were always on hand to provide support when needed.

We had prayed for a miracle of healing – we didn’t get that miracle – but the beautiful way in which Leah was able to die, was in itself a miracle and for that – through tears of grief and sadness – I am very thankful.

As Leah’s Mummy I must consider all possible options

Leah had her CT scan of her lungs this morning and it showed a significant deterioration since the CT scan done just over two weeks ago when she was already very ill.

The doctors are not hopeful that she will recover.

It is good to continue to hope and pray for a miracle.

However as Leah’s Mummy I must consider all possible options.

Today I have been talking to some professional people who can give advice and guidance regarding end of life care should this be what lies ahead for us.

In an end of life situation ideally I wouldn’t want things to “just happen” – I would like there to be a plan so that there can be dignity for both Leah and for our extended family.

If we don’t need any of these plans it will be wonderful.

In the meantime Leah will be kept fully sedated because the mode of ventilation she currently requires would be uncomfortable for her if she was awake.

The Drs have no new treatment options and will continue with her current treatment plan unless or until she recovers or deteriorates further.

“God is in every tomorrow,
Therefore I live for today,
Certain of finding at sunrise,
Guidance and strength for the way;
Power for each moment of weakness,
Hope for each moment of pain,
Comfort for every sorrow,
Sunshine and joy after rain.”