I went into Leah’s bedroom today and turned over her both her calendars and they are each so true – Leah carved her name on our hearts and she died full of faith and assurance of having her sins forgiven and a place in heaven………
What is the world coming to – I never expected this Corkonian to be playing Rend Collective?
Here’s the full length version of ‘My Lighthouse’ from Leah’s favourite band, this was played by “Under Construction” at her funeral, as Leah’s coffin was being carried out of the church.
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.
In Bristol Children’s Hospital the cleaning staff always knocked and asked our permission before entering Leah’s room to clean it. If we indicated that it wasn’t a good time they would go away and came back later. If Leah and I were snuggled up together in her hospital bed watching a DVD then the nursing staff often apologized for intruding. Shortly after Leah was admitted to the Bone Marrow Transplant Unit there I was quite taken aback when our very senior haematology consultant even apologized for disturbing us when he came to see Leah!
However once Leah became an adult (i.e. over 16) and was in the adult ICU in Belfast City Hospital, there were times when I felt like the intruder. Now I was the person on the outside knocking and asking permission to enter. I hadn’t changed but the environment had changed, policies and procedures had changed, and my heart was breaking.
In Bristol when Leah was ill I provided all her personal care, showered her, dressed her, changed her bed linen etc. The nurses administered her medication, worked the pumps, nasogastric feeds etc. It never occurred to me that it would be so different when we returned to adult services in N.I..
On Thursday morning 2nd January I could see that Leah’s oxygen levels were dropping and that she was finding it increasingly difficult to breathe. I knew that putting her on a ventilator was the likely next step. I was asked to leave the ICU for doctor’s rounds so I went and had breakfast in the hospital cafe – I liked their warm and frothy cinnamon milk.
Shortly after my return to Leah’s side-room the consultant on duty called me into a separate room. He explained that Leah was critically ill and that they would have to put her on a ventilator to help her breathe. He said that this would entail giving her a general anesthetic & keeping her fully sedated for at least the first 24hrs or maybe more.
He said that because she was so ill she might not even survive the process of being put on the ventilator. He also said that she needed some essential blood products before being ventilated in order to reduce the risk of death and these weren’t available yet so it would be 1-2 hrs before they could go ahead with the procedure. I knew that this unfortunate delay could further increase the threat to her life.
I asked the doctor if I could stay and hold her hand until the general anaesthetic had been administered and she had gone to sleep. He replied that this wasn’t possible as he had equipment to set up and I would be in his way. He continued talking, explaining other aspects of her situation, but I couldn’t concentrate. My stomach was churning. My child was possibly going to die. He was going to put her to sleep and I couldn’t be there to provide reassurance and comfort until the anaesthetic took effect. The last face my child would see would be his face and not mine.
I wanted back in to see Leah, knowing that every moment was precious, but right now my breakfast was threatening to make a reappearance and there was no relative’s toilet in ICU. I excused myself and made my way through the convoluted set of corridors until I reached the public toilets in the hospital foyer.
Thankfully the disabled toilets were available – I didn’t want an audience. I locked the door and gripped the sink as the walls spun round me. I closed my eyes and tried to slow my breathing. This was awful – just awful.
About 20min later I had finally regained my composure and could return to my daughter. I sat and read to her and prayed with her and we listened to her favourite Christian music on her iPad. Due to some difficulty in sourcing the very specific blood products Leah needed, it was a couple of hours before the doctor came and put us out of the room. During this time of waiting, Leah’s oxygen levels continued dropping and the machine that was monitoring her stats was frequently alarming. I wondered at one stage if Leah was going to live long enough to even go on the ventilator.
The Bible says in Ecclesiastes 3:2 “There is a time to be born and a time to die” and thankfully this was not Leah’s time to die.
On Monday 13th January Leah’s oxygen levels were again dropping and she was again finding breathing difficult although this time round she was already on a ventilator and she was awake.
Thankfully a different consultant was on duty – one who didn’t mind me being with my child & giving her comfort while he worked through the crisis. He tried many different approaches to help her with her breathing difficulties until the only option left was to fully anaesthetise her for the last time. While all of this was happening I comforted her by holding her hand and stroking her head. The last face that Leah saw before going to sleep was mine and it was a face so filled with love for my daughter.
Leah remained fully anaesthetised until she was transferred to the N.I. Children’s Hospice on Thursday 16th January to spend her final moments in peace and dignity surrounded by the love of our large extended family and a few very close friends.
It’s so hard to explain how in the midst of the terrible sadness of my daughter’s death I still feel an incredible sense of God’s perfect timing.
Another song that Leah and I loved comes to mind, it’s “Sovereign Over Us” by Aaron Keys
“There is strength within the sorrow, There is beauty in our tears
You meet us in our mourning, With a love that casts out fear”
Thank you to everyone who has contacted me, with words of encouragement, regarding publishing my writings.
Producing and marketing a book of sufficient quality to sell to strangers as well as friends would require a lot of work and self discipline.
I need to grieve first.
A lot has happened in this past year that I have yet to process.
I returned to counselling yesterday.
I have written in notebooks all my life as a way of coping with difficult situations, but never before have I shown these writings to anyone, not even to my husband.
Since Leah became critically ill and died I have found an incredible release in being able to write on this page from the depths of my heart and receive such loving responses from my readers – frankly I have been overwhelmed in a very positive way by this.
Publishing a book about the Journey that Leah and I have been on this past year would expose my innermost thoughts and the life of my family to a much wider audience than just those on our Facebook page or those who access this blog.
Not only me but our whole extended family including Leah’s boyfriend Nic would need to be emotionally strong enough to cope with the exposure and vulnerability that publishing a book would inevitably bring.
In many ways this blog could be a “test run” for how we all would cope with so many other people knowing so much of what has gone on behind closed doors.
It hasn’t just been MY journey and if/when the time comes to publish a book then careful consideration would need to be given to the perceptions and sensitivities of others who have been intimately involved in this journey.
We all, in our own way, have to find meaning in suffering.
Mine is not an angry “Why has this happened to me Lord?” but a weak and tearful “Lord please show me how You want to use this awful experience in my life in a way that glorifies You and somehow helps others.”
If God’s purpose in all of this is the publishing of a book then He will give me the strength & wisdom to do so when the time is right.
At 1.40pm in the Children’s Hospice surrounded by those she loved & listening to her favourite Christian music, beautiful Leah went home to Jesus very peacefully.
For Leah this means no more chemotherapy, no more physical pain, no more nausea & vomiting, no more oral meds & injections, no more side effects, no more tubes, no more blood tests, scans, X-rays, being poked, prodded, examined, spending endless hours in hospitals, time in isolation, having to worry about every lump, bump & new symptom, etc etc
Leah was ready to meet Jesus, of this, I have no doubt, it’s us who aren’t ready to say goodbye.
For those who knew and loved her, there is the overwhelming sadness of parting.
“For the Lamb at the centre of the throne will be their shepherd;
He will lead them to springs of living water.
And God will wipe away every tear from their eyes.”
Here is another song that has been special for Leah and I on this journey
“It is well with my soul” by Hillsongs
“When peace like a river
Attendeth my way
When sorrows like sea billows roll
Whatever my lot
You have taught me to say
It is well
It is well with my soul”