My Story

In 2012 I found myself on three separate occasions listening to a speaker called Catherine Campbell  who described how God had been her source of help and strength throughout the illness and death of two of her three children.

I had been a Christian for over thirty years and I earnestly desired God’s will for my life, but I just couldn’t imagine ever being able to cope emotionally with the loss of one of my children – my four children were my life.

The 31st December 2012 was Leah’s 15th birthday. She was the second eldest of our four children, whose ages then ranged between nine and eighteen years. I had booked a GP appointment for Leah for that day as she had some relatively minor ailments that were bothering her. Our GP did some standard blood tests, the results of which were to change all of our lives forever.

Leah with flower in her hair
Leah before she became ill

Initially they thought that Leah had leukaemia, but that was quickly ruled out. Our local haematologist adopted a “wait and see” approach and Leah had to have blood tests every week. She had some other investigations as well.

Eventually in April 2013 we received the devastating news that Leah had a rare but potentially aggressive haematological malignancy called paediatric myelodysplasia, along with an acquired chromosomal abnormality called monosomy 7. We subsequently discovered that this had been caused by a Gata2 genetic mutation. Leah needed a bone marrow transplant. The consultant in Belfast referred Leah to Bristol Children’s Hospital for specialist care.

Leah’s response to her diagnosis was simple. She told her dad and me “God has a plan for my life” and “we have to see the bigger picture“.

All weekend, after hearing the news of Leah’s diagnosis, two Bible verses from the book of Job kept popping into my head:

Job 2:10 NIV

Job replied, “You are talking like a foolish woman. Shall we accept good from God, and not trouble?”

Job 1:22 NIV

In all of this Job did not sin by charging God with wrongdoing.

I prayed and asked God that no matter what happened, that He would help me to never blame Him or “charge Him with wrongdoing”.

The Daily Devotional that I used then – along with my Bible – was (and still is) Streams in the Desert  by L.B. Cowan. This devotional was originally published in 1925, but has now been updated. 

One day I remarked to Leah “I don’t understand how daily readings, written so long ago, could be so incredibly relevant to my life right now.” Quick as a flash, Leah replied “Well Mummy, the Bible was written a long time ago and look how relevant that is.” Such words of wisdom, from one so young!

I also read John Piper’s mini booklet Don’t Waste Your Cancer. On the last page he quotes Philippians 4:19:

“And my God will meet all your needs according to the riches of his glory in Christ Jesus.”

Leah and I were seeing God’s provision for us on every step of this incredibly difficult journey. This included family, friends and neighbours fundraising for us and helping us in many practical ways.

poster

Our church printed prayer cards for Leah and she chose as her Bible verse Nehemiah 8:10

“The joy of the Lord is my strength”.

Within weeks 1,000 of these prayer cards had been distributed and more were printed.

prayer-card

By July 2013 Leah still looked well; she was going out and about and meeting up with her friends. Although she tired easily, she had a relatively good quality of life.

I became convinced that prayer had encased Leah in a protective bubble. I believed that the prayers of God’s people, combined with the expertise in Bristol Children’s Hospital, was going to be a winning combination.

As Leah and I stood outside the Bone Marrow Transplant Unit  in Bristol Children’s Hospital at 8.30am on Monday 21st July 2013, waiting to be admitted, Leah began to feel unwell.

Unfortunately, once we had been shown into our cubicle, Leah became even more unwell. Within a couple of hours Leah was critically ill with septicaemia. I was devastated.

As the week went on, things didn’t get any better. Five different gram negative bacteria were cultured in Leah’s bloodstream. Some of them were resistant to antibiotics.

By Saturday of that first week, it was just Leah and me in Bristol, in an isolation cubicle. Simon’s donated bone marrow was in the hospital freezer and the rest of the family had left to return to Ireland.

On the Sunday we were informed that there was a “zoo of bacteria” in Leah’s bloodstream and her Hickman central line would have to be removed. I felt like I’d been kicked in the gut.

Leah’s double lumen central line was essential for the administration of all her treatments and blood transfusions. Without it she would be dependent on cannulas inserted in the peripheral veins of both arms, which for Leah always resulted in phlebitis, a very painful condition.

Disappointment hung heavy in the air between us. Leah and I couldn’t converse, we couldn’t even look at each other. We couldn’t bear to see the disappointment and unanswered questions in each other’s eyes.

Back home in Ireland, when Leah was in hospital, we received chaplaincy on a daily basis. Here in Bristol we received one chaplaincy visit some weeks, other weeks we received none.

The nurses were busy, the hospital Clic Sargent  Social Worker was on long term leave as also was the Play Worker assigned to the BMT Unit. I couldn’t phone home or face-time, because Leah was very unwell and she needed me to be available to her, at very short notice.

I wanted to cry or scream, but there was nowhere to go, I was on duty 24/7.

I came across a quote by C.S. Lewis and it resonated with me:

When you are happy, so happy you have no sense of needing Him, so happy that you are tempted to feel His claims upon you as an interruption, if you remember yourself and turn to Him with gratitude and praise, you will be — or so it feels— welcomed with open arms. But go to Him when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence.” C.S. Lewis, A Grief Observed

My brave daughter was taken to the operating theatre for removal of her Hickman Central Line. She returned with a cannula in each arm and my heart silently broke, knowing how much Leah hated cannulas.

Leah continued having chemotherapy twice every day and she was constantly being sick and having diarrhoea.

Eventually the infection in Leah’s blood finally cleared, for which we were both very thankful.

On Thursday 1st August 2013 Leah received her brother Simon’s bone marrow directly into her bloodstream.

Transplant

Then the waiting began, to know if the transplant had been successful.

Leah developed severe mucositis which meant she could not speak or even swallow her own saliva. She was commenced on a morphine pump for pain control.

By this stage Leah also had a nasogastric tube, but she kept vomiting her nasogastric feeds, as well as vomiting the nasogastric tube, so eventually she had to be fed parenterally via a system known as TPN. By then, her double lumen Hickman central line had been replaced. Around this time Leah also lost all her hair.

We were both struggling, emotionally as well as spiritually.

On Tuesday 6nd August Leah’s boyfriend Nic arrived, for a week-long visit. This meant that I had some free time during the day. I could get some fresh air, exercise, and regular meals, do some shopping, phone home and spend a little time making friends with other oncology parents.

Nic and Leah 2

During Nic’s visit I discovered an old Methodist church in the centre of Bristol called The New Room, built in 1739, and beautifully restored. The scent of the wooden pews was a very welcome contrast to the smell of the hospital antiseptic. I found a quiet corner and opened the Bible that was provided.

I read Philippians 4:6-7

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Hot salty tears ran down my cheeks. I felt the nearness of God’s presence as His peace flooded my heart.

Later that day, I wrote in my Journal:

Maybe the real miracle of healing is the one that takes place in our hearts and enables us to cope with our situation.”

By the time that Nic left us to return to Ireland, Leah and I had found renewed strength to face our situation. I realised that I needed to become Leah’s chaplain. It then became our daily practice for me to read to Leah from the Word of God, read a passage from a Daily Devotional and then pray with her.

Romans 8:37-39 became one of our favourite passages of Scripture:

“Yet in all these things we are more than conquerors through Him who loved us. For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come,  nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.”

We were comforted by the assurance that no matter how bad things got, nothing, absolutely nothing, would ever, could ever, separate us from the love of God that is ours through His son Jesus.

At the end of August Leah was transferred out of the bone marrow transplant unit to a lovely single room on their purpose built adolescent ward. In September Leah developed side effects from her transplant and she had to go on very high dose steroid therapy, but eventually her condition stabilised and the doctors began to talk about giving us a date for booking our flights home. By this stage Leah had become quite lonely and homesick.

Then, just when we thought we were ready to book our flights home, Leah developed some new and very nasty side-effects and she was readmitted to an isolation cubicle on the bone marrow transplant unit. She had dreadful bladder spasms and could not sleep by night or day. She became terribly distressed. At night when she couldn’t sleep, I would read to her page after page from the little book 50 Days of Hope: Daily Inspiration for Your Journey through Cancer

We finally escaped back to Belfast at the end of October, by the skin of our teeth. It was a nail biting finish as Leah kept developing new complications and the doctors weren’t sure if she would be well enough to fly. We were very relieved to be back in Ireland, but we were also very fragile emotionally and very traumatised by what we had been through.

As the weeks went by, I began to relax and believe that Leah really was getting better. Then she started getting back pain, which at times was very severe and debilitating. In early December we were told that Leah had developed a spontaneous fracture of her thoracic spine. I was devastated. She had been weaned off her steroids in November. This should not be happening to a young girl who had been relatively fit and healthy up until a few months ago.

image

I felt very uneasy, but Leah was being closely monitored, so when Christmas came I tried hard to push my worries and concerns to one side and enjoy Christmas together as a family of six. It felt good to all be together again at last.

On Friday 27th December 2013 I took Leah to a routine outpatients appointment in Belfast, from which she never returned. Within 24 hours she was transferred to ICU with breathing difficulties. Once Leah was settled in the ICU the Dr called me in and told me that Leah was possibly going to die. When I went back in to Leah she asked me what the Dr had said and I told her. One single tear trickled down her cheek but that was it, she showed no fear.

Within days of being admitted to ICU, Leah needed a ventilator to help her breathe. Over the next two weeks Leah was very serene and joyful. She gave us lots of hugs and kisses and told us all how much she loved us. She also loved to be prayed with. We received great spiritual support from the hospital chaplaincy team, and from our own ministers.

On one occasion when our minister was visiting, Leah played a song on her iPad and drew our attention to the words. It was One Thing Remains by the  Jesus Culture:

In death, In life, I’m confident and

covered by the power of Your great love

My debt is paid, there’s nothing that can

separate my heart from Your great love…

During all of this time I thought that Leah would be healed. There was thousands of people all over the world praying for Leah and as far as I was concerned, it didn’t matter what the doctors told me, it wasn’t over unless or until God said it was over. Unfortunately Leah’s condition just continued to deteriorate. Eventually on Sunday 12th January 2014 when I was sitting holding Leah’s hand, praying and reading quietly, the realisation dawned on me that God wasn’t going to heal Leah. I was heartbroken, my whole body felt like lead, even walking became such an effort.

The next day there was a medical crisis and Leah had to be anaesthetised. Her condition had deteriorated to the extent that she needed a form of ventilation that could not be tolerated by someone who was conscious and awake.

I became aware that I needed to start thinking in terms of Leah’s end of life care and I asked what our options were. I was told that we had no options, Leah would die in ICU. I said that I wanted to take Leah home or to the Children’s Hospice but I was told that this could not happen as she was on a ventilator. Thankfully a work colleague put me in touch with a lovely doctor, who specialises in Paediatric Palliative Care. This doctor immediately dropped everything to drive seventy miles to come and be with us in the ICU. We had a meeting with the doctors and nurses who were caring for Leah. This specialist convinced them that it was both safe and possible for Leah to be transferred to the Children’s Hospice for her end of life care. Before leaving the hospital, she prayed with Leah’s boyfriend Nic, his Mum and myself. She helped us so much in every way possible.

On Thursday 16th January 2014 Leah was transferred by ambulance to the N.I. Children’s Hospice, accompanied by one of our favourite doctors and one of our favourite nurses. Thirty members of our extended family were waiting for us there, along with our minister, our Clic Sargent SW and our TYA (Teenage and Young Adult) Cancer Nurse Specialist.

Name

Leah was made comfortable in a very pretty room with her name on the door. We were given time to say goodbye, then her life support was gradually withdrawn. Leah’s music was playing quietly in the background. The last song that I remember hearing was A Beautiful Life by Mikeschair

A beautiful life is unfolding before my eyes

Just like the sun will rise to fill the empty sky, so shine

Oh, you’re beautiful, oh, you’re beautiful, oh, your beautiful life

I want you to see that you’re the one I love

And I will complete the work that I’ve begun

Oh, could you believe that the best is yet to come?

And I can’t wait for you to hold what I already know

After Leah had died, the hospice staff were there to support us. They even provided lunch for everyone. They knew exactly what to do and say. It was such a peaceful environment.

Coming home without Leah that day was one of the loneliest experiences of my life. I felt totally exhausted and completely disorientated. Our extended family, friends and neighbours rallied around us in an outpouring of love.

As the numbness and exhaustion wore off, the pain and grief set in and became overwhelming. Friends visited or took me out for lunch, which I appreciated. I didn’t feel like me anymore and I didn’t like that feeling. Sometimes I felt like I was standing at the edge of a huge abyss that wanted to suck me in. Attending our own church felt very painful, because our family had shrunk and Leah’s absence seemed so conspicuous.

Isaiah 43:1-2
But now, this is what the Lord says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.

I really appreciate this Bible passage about walking through the fire, as some Christians seem to have this erroneous idea that if you have enough faith that you will live a long and happy life – that you can just command your troubles in Jesus name to disappear and they will go. I have read the Bible from Genesis through to Revelation and that’s not what I have read.

Paul was considered to be a great man of faith, yet his letters to the Ephesians, Philippians, Colossians and Philemon were all written while he was under house arrest in Rome. In Acts 16 Paul is miraculously delivered from jail, but when he is subsequently held captive in Rome for two years, there is no such divine intervention.

Are we to suppose that Paul had somehow forgotten the ‘magic formula’ or lost his faith? There is absolutely nothing in the Bible to support such a view, rather to the contrary, some of Paul’s most encouraging words were written while he was held in captivity.

Many times, like Paul, we will find ourselves speaking from a place of captivity. We might be ‘held captive’  by a difficult relationship, an unhappy job, or  a season of grief and loss, but the Bible promises in 2 Corinthians 1:4 that:

“God comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

I get through each day without Leah in the same way as I got through her illness – by feasting daily on the manna of God’s Word – there’s no shortcuts really. Recently I’ve been greatly helped by a book by Kay Arthur called When the Hurt Runs Deep: Healing and Hope for Life’s Desperate Moments This book is written for anyone who has experienced any kind of heartache or deep disappointment. At the back there is a Bible study that correlates with every chapter in the book; working through this, either alone or in a group really helps to embed the truths in one’s heart and life.

For me personally, when dealing with a grief so deep and so awful as the death of a child, the only way to stay sane is to walk close to God and to retain an eternal perspective on life and a Biblical perspective on suffering.

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