The Land of the Living

The Land of the Living

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Friday 27th December 2013 started well. That night we were planning to go to a big surprise get together of family and friends for my niece’s 30th birthday. Leah was happiest when surrounded by family and friends and this was the first family get-together that she had been allowed to attend since her bone marrow transplant in Bristol on the 1st August earlier that year. Leah was very excited.

30th-birthday-invite

However, during that day Leah became seriously ill, with an initial diagnosis of pneumonia. She was admitted to the Cancer Centre  in Belfast and subsequently transferred to ICU at Belfast City Hospital. Two and a half weeks later we had a family get together of a different kind, when we all gathered together at the N.I. Children’s Hospice  to say our goodbyes – the ones that we didn’t want to have to say.

During Advent I have been reading the daily devotionals that were especially written for the charity Samaritan’s Purse UK by Malcolm Duncan. He is a Pastor at Gold Hill Baptist Church and a leader at Spring Harvest. Malcolm is sadly very familiar with grief and loss. I previously wrote here about his very helpful sermons on the topic of the theology of suffering. In his devotional for the 1st December what Malcolm wrote regarding the death of a friend of his, has really stuck with me and brought me great comfort:

When my friend died, she left the land of dying and entered the land of the living. Death did not win. Cancer did not win. Sin did not win. Her salvation is now complete. She is more fully alive than she has ever been. She is more fully herself than she ever was. She is complete, truly released and free. Nothing can change who she now is. This is the great hope of every Christian. God wins! God always wins in the lives of Christians because God always has the last word.

During those two and a half weeks when Leah was dying, she and I derived so much comfort from listening to her favourite songs, which she had previously saved into playlists. Their lyrics washed over our hearts and minds and pointed us to the only One who could give us the strength to face each day.

leahs-playlist

Since Leah’s death most of these songs have continued to bring me comfort, as I miss Leah and yearn for her presence in our lives. Today I have one of the songs from this list playing on repeat; ‘Bring the Rain‘ by MercyMe.

 Bring The Rain

I can count a million times
People asking me how I
Can praise You with all that I’ve gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It’s never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there’ll be days
When this life brings me pain
But if that’s what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what’s a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

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Child Cancer Awareness Month 2016

Child Cancer Awareness Month 2016

Be Aware

I have been acutely aware since waking up this morning that today is the 1st of September – the start of Childhood Cancer Awareness Month. I wish that I wasn’t Child Cancer Aware – not to the extent that I am now anyway. I wish that I could just roll back my life to a time four years ago when (despite my nursing qualifications) my knowledge of childhood cancer was almost non existent. Yes of course it’s important to be Childhood Cancer Aware but I wish that this was mere ‘head knowledge’ and not ‘heart knowledge’.

My ‘awareness’ of childhood cancer causes me to feel deep sadness and fight back tears every. single. day. The least wee thing can trigger this – a product display in the grocery store, a casual comment from a friend or work colleague, a memory that suddenly pops into my head.

This time three years ago Leah and I were in Bristol Children’s Hospital. The previous week Leah had been transferred out of her isolation cubicle on the Bone Marrow Transplant Unit to a beautiful ensuite room on their amazing purpose built Adolescent Unit. We had also been told the most fantastic news ever, which was that Leah’s bone marrow transplant had been successful and that she was fully engrafted. We were ecstatic. It was now going to be onwards and upwards, or so we thought.

Leah was allowed off the ward for short periods of time, so on the 2nd of September we very cheekily had a sneaky trip to the local Costa – this was strictly forbidden as Leah’s immune system was still very fragile.

Leah at Costa

Sadly our euphoria was short lived, as over the following weeks and months, side effect after side effect from the harsh treatments that she had experienced began to ravage Leah’s body, until finally – five months post transplant – these side effects also claimed her life. The cure proved as destructive as the disease.

Devastatingly, this is the reality of childhood cancer.

 

Operation Beautiful~One Note At A Time

Operation Beautiful~One Note At A Time

Tomorrow I’m leading Children’s Church – something I seldom volunteer for since Leah died. This morning I was scouring the house for our  Veggietales  DVD collection to use one of them in Children’s Church, when it occurred to me that some of them might be in Leah’s bedroom. As I was searching through Leah’s possessions, I found myself lingering, reminiscing, and grieving.

Sometimes people ask me whether it gets easier as time goes on? I’m not sure if the pain of child loss ever gets any less. What has changed as time goes on is my ability to deal with the pain. I’m gradually learning some coping strategies that enable me to live with the pain of child loss, so that I can, by God’s grace, live a relatively normal life most of the time.

Choose

There are some of Leah’s belongings that I haven’t looked through at all since she died. Today, while going through a few of those, I came across a booklet that she had received at  Girl’s Brigade called ‘Spiritual Sparkles‘.

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I know that being a part of Girl’s Brigade was really important to Leah and that she would probably have read this booklet from cover to cover. I found myself glancing through it as I thought about my daughter. My attention was suddenly gripped by this page:

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The ‘secret post-iter‘! That’s where she got the idea from! Leah was well known for writing encouraging notes on post-its and leaving them for others to read. In March 2013 Leah introduced this concept at the LOST outreach weekend for young people in Limavady.

Before we left Sam’s House in Bristol in October 2013, I was dispatched to the shops to buy her a packet of post-it notes. Afterwards one of our friends posted this on Facebook:

Sams House Post It (1)

After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:

Rachel's Post It

Leah also had lots of post-its stuck up around her own bedroom to encourage her as she recovered from her bone marrow transplant and battled GvHD (graft vs host disease). She struggled with the very unpleasant side-effects of high dose steroid therapy and chemotherapy hair loss and she needed all the encouragement she could find:

I Peter 3 v 3

I miss Leah’s little notes; every time I do a clear out I find some little card or note of encouragement that I received from her over the years. I cry for what I have lost, I thank God for what I have had and I carefully place each note or card in a Memory Box.

I think the idea behind Operation Beautiful  is really worthwhile. Their website explains their purpose:

The mission of Operation Beautiful is to post anonymous notes in public places for other people to find. The point is that WE ARE ALL BEAUTIFUL. You are enough… just the way you are!

I know that Leah was very concerned about the many negative messages that young people are getting and the effect that this is having on their self image and their self esteem. I can see why this simple concept would have really appealed to her. I think that it’s a lovely idea.

NOTHING can separate us from HIS Love

NOTHING can separate us from HIS Love

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One of the saddest and loneliest experiences of my life was returning home without Leah from the Children’s Hospice on Thursday the 16th January 2014. As we turned in to our drive I caught sight of our other car – a seven seater family car – and the realisation dawned “our family doesn’t need a car that size anymore”.

It had been twenty days since I had driven away from the house, with our two elder daughters. There had been an air of excitement in the car, as that night we were going to a large family get together – our first since Leah’s bone marrow transplant in August. This was going to be a very special occasion.

The rest, the say, is history.

I was by now totally exhausted, both mentally and physically. I managed a few hours sleep that night. When I got up on the Friday morning, I felt bewildered and disorientated. I had no script for what to do next. Like every other day I snatched a few moments of quietness to spend with my Saviour, reading and praying, in the hope of finding some help and strength. My concentration was very poor and I struggled to focus on the words on the page. My reading for that day in Streams in the Desert‘ was Daniel 6:20:

Daniel, servant of the living God, has your God, whom you serve continually, been able to rescue you?”

Daniel had spent the night in the lion’s den as his punishment for praying to the living God. The King had gone there first thing in the morning, hoping that Daniel was still alive, which he was.

The phrase which was highlighted in my reading that morning is that we serve a ‘living God‘, one who is unchanging and who is always there. In the reading George Mueller is quoted as saying:

In the greatest difficulties, in the heaviest trials, in the deepest poverty and necessities, He has never failed me; but because I was enabled by His grace to trust Him, He has always appeared for my help. I delight in speaking well of His name.”

This past two years have been rough, I continually grieve and mourn for Leah. I mourn too for others that I’ve known along the way who, like Leah, have had their lives cut short by illness, by accident or by suicide. I don’t understand why there’s so much suffering in the world, I don’t understand why some seem to experience miraculous healing while others, equally loved and prayed for, die.

Still, I believe that God is a good God and that many things in this life are a mystery and beyond our understanding. I believe that NOTHING can separate us from God’s love which is ours in Christ Jesus. One of the passages of Scripture that Leah and I read together most often during her illness was Romans 8:35 – 39.

35 Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? 36 As it is written:
“For Your sake we are killed all day long;
We are accounted as sheep for the slaughter.”
37 Yet in all these things we are more than conquerors through Him who loved us. 38 For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, 39 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.

Rend Collective, Leah’s favourite band, have a song based on Romans 8:37 “In all these things we are more than conquerors through Him who loved us.” I heard it at New Horizon in Coleraine the Summer after Leah died and I thought the words and tune were really encouraging:

MORE THAN CONQUERORS

We are more than conquerors, through Christ
You have overcome this world, this life
We will not bow to sin or to shame
We are defiant in Your name
You are the fire that cannot be tamed
You are the power in our veins
Our Lord, our God, our Conqueror

I will sing into the night
Christ is risen and on high
Greater is He
Living in me
Than in the world

No surrender, no retreat
We are free and we’re redeemed
We will declare
Over despair
You are the hope 

 

BLOODWISE – What’s In A Name?

BLOODWISE – What’s In A Name?

September is not only Childhood Cancer Awareness Month, it is also Blood Cancer Awareness Month.

This month, the charity formerly known as Leukaemia & Lymphoma Research have changed their name to Bloodwise. To coincide, they have launched a huge media awareness campaign in the UK.

I think that the name change and media awareness campaign is a brilliant idea.

Bloodwise tells us that –

There are 137 types of blood cancer and related disorders.

When Leah was initially diagnosed, we did not know where to turn. Nobody seemed to have heard of myelodysplasia with monosomy 7. We felt so isolated and alone. Any of the well known blood cancer charities just seemed to talk about leukaemia and lymphoma, so I thought that there was no point in contacting them for help and advice.

The name Bloodwise seems way more inclusive. I visited their new web-site, clicked on the menu tab in the top left hand corner, selected Information and Support, which caused another menu to pop up. Here I clicked on Information and Support, causing a new page to open. When I scroll down this page I see a sentence “I am looking for information on All blood cancers” and clicking the down arrow at the end of this, gives a drop down box where I see lists of various types of leukaemia, lymphoma and Other blood cancers which is where Myelodysplasia/Myelodysplastic syndromes are mentioned.

All Blood Cancers

When you visit their web-page, these headings are all ‘hyperlinks’, so if you click on any of them, you get more information about that particular diagnosis. So, for example, if I click on Myelodysplastic Syndromes, this page opens.

Well done Bloodwise – I like your rebranding! I also like your commitment to research, especially research into understanding the genetics of some blood cancers.

Two weeks after Leah received her diagnosis at Belfast City Hospital I contacted a member of staff at the Sperrin Unit looking for help and support. The Sperrin Unit at Altnagelvin Hospital is our local Haematology/Oncology Unit where Leah had been having investigations for four months prior to her diagnosis. The staff there referred us to the N.I. Cancer Fund for Children, who continue to provide us with very valuable support.

The following week, while attending an appointment at the Regional Fertility Clinic at ‘The Royal’ in Belfast, Leah suggested that we visit the Macmillan Information Service in the main hospital. The Macmillan Information Service Manager there referred Leah to a Clic Sargent Social Worker and a TYA Clinical Nurse Specialist, both based at Belfast City Hospital, where Leah had many of her appointments post diagnosis.

It was such a huge relief to us to have support at last and to be able to talk to people who understood. Finally we had found people who could answer some of our questions and who could help us start making sense of everything that was happening.

It wasn’t just our friends and family who hadn’t heard of Leah’s diagnosis before, on several occasions in N. Ireland I encountered nurses and doctors who hadn’t heard of it either.

On one occasion, when Leah was an inpatient, a young doctor held up Leah’s notes and said to me “Do I have to read through all of this or can you explain everything to me?” I very much appreciated his honesty and I happily explained everything to him.

To be honest, I found the attitude of this young doctor far more respectful, than the attitude of the young consultant who, when Leah was dying, said to me, “I’m glad that your niece is here, because she’s a nurse and she can explain the medical terminology to you.” Leah had been two and a half weeks in that unit at this stage – did I really come across as not knowing what they were talking about?

I never advertised the fact that I’m a nurse (dual qualified – general adult and mental health) as I just wanted to be treated as “Leah’s Mummy”.

However, in my experience, most parents of children and young people with chronic/life limiting illnesses very quickly become experts in their child’s condition and want to be treated as partners in their child’s care by healthcare professionals.

Furthermore, if this doctor had thought that I didn’t understand what he was saying, then he should have used simpler terminology or explained himself better. My daughter was D-Y-I-N-G, we were arranging her end of life care, within twenty four hours she was gone.

As a healthcare professional myself, I consider that it’s my responsibility to ensure that service users can understand me, taking into account their cultural and ethnic background, standard of education and any disability that may impact on communication.

Dr Kate Granger is spot on in her most recent blog post when she talks about the importance of communication and compassion. The many healthcare staff who exemplified those two qualities while caring for Leah and I, certainly made our difficult journey that little bit easier and will always be fondly remembered by me.

In closing, I want to raise awareness that many people with a blood cancer will require a bone marrow or stem cell transplant.

Unfortunately this didn’t save Leah’s life, although it may have given us some extra, precious, time.

Margot Martini
Margot Martini

           Nevertheless, a bone marrow/stem cell transplant has saved the lives of many other adults and children.

Here are some facts, taken from the website Team Margot, which is run by the parents of a gorgeous little girl called Margot Martini, who sadly also lost her life to blood cancer:

OVER 37,000 PEOPLE WORLDWIDE NEED A BONE MARROW TRANSPLANT…

BUT THEY MUST FIRST FIND A MATCHING DONOR.

ON AVERAGE, ONLY HALF OF THOSE SEEKING A MATCHING DONOR WILL EVER FIND ONE.

THE ODDS OF SUCCESS FALL TO JUST 21% IF THE PATIENT HAS AN ETHNIC OR MIXED RACE HERITAGE.

IT NEEDN’T BE THAT WAY – YOU CAN HELP!

PLEASE REGISTER AS A POTENTIAL DONOR –

YOU CAN SAVE A LIFE.

IMAGINE by Katie Dalgoutte

IMAGINE by Katie Dalgoutte

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September is Childhood Cancer Awareness month.

There was a time when I did not know this.

In September 2013, Leah and I were in the third month of our stay in Bristol, where she had received a bone marrow transplant for myelodysplasia and monosomy 7, a rare haematological malignancy. In Leah’s case this was caused by an even rarer GATA2 genetic mutation.

On Monday 30th September 2013, we had an appointment with Leah’s consultant, at which we had been promised that Leah would be given a discharge date and the go ahead to book our flights back home to Ireland. Leah was so excited, she could hardly wait.

Devastatingly, Leah became very unwell on the Sunday night. Leah saw her consultant alright – he arranged for her to be readmitted to a tiny isolation room on the Bone Marrow Transplant Unit. We were heartbroken.

While in that room, I first discovered the poem “Imagine” by Katie Dalgoutte.

In this poem Katie describes what I was feeling, but couldn’t put into words.

I have never been able to read this poem without crying.

“Imagine”

Imagine being told your child is seriously ill.

Imagine crying until you think there’s nothing left.

Imagine feeling like you’ve been punched in the stomach and wandering the corridors, as if your life was on pause for days on end, not able to comprehend what is happening.

Imagine signing a consent form knowing that death is an option.

Imagine having to hand over your child to surgeons for endless hours and waiting…

Imagine having to watch as your once active child isn’t even able to open their eyes for a week.

Imagine the terror…

Imagine the pain of having to leave your baby in the care of strangers and not being able to sleep by their side.

Imagine standing by as your baby’s body is pumped full of poison.

Imagine holding your baby while someone holds a mask over their face as they struggle in fright.

Imagine holding your baby countless times while someone sticks needles in them while they scream.

Imagine the guilt…

Imagine being told the percentage chance that your child might survive or leave you.

Imagine holding back the tears when your other child is carried away from you screaming “mummy” not understanding why you won’t come home.

Imagine watching as within two days your child loses all their hair.

Imagine losing all your independence and identity and just becoming someone’s Mummy.

Imagine not being able to leave the house for fear of infection.

Imagine not being to able to make any plans apart from hospital visits.

Imagine being stuck in isolation and not seeing anything but four walls for days on end.

Imagine learning a whole new vocabulary of words which is all you talk about anymore.

Imagine good friends being too uncomfortable to see you or speak to you anymore.

Imagine the loneliness…

Imagine perfect strangers passing comment about your son

But with the emptiness …

Imagine the kindness of strangers who don’t know you

Imagine the incredible support from people you’ve never met but know how it feels.

Imagine how special each cuddle is that you feel the need to memorise it.

Imagine the magic of each smile knowing that this smile was lost for weeks and now it’s back

Imagine how fragile and precious life feels

September is Childhood Cancer Awareness month, if I hadn’t told you, would you have known? It’s swept under the carpet as a taboo subject.

Imagine if it couldn’t be taboo in your world, because it was your world…

Imagine if I had known the symptoms,

Imagine if all GPs knew the symptoms,

Imagine if you felt you had the power to help others, not be in the same position…

Imagine … Don’t pity, don’t sympathise, just spread awareness and just imagine, because it could be you …..

                         by Katie Dalgoutte

Leah asleep - awareness month

awareness-card-Ted

Leah Is My Sister

Leah Is My Sister

I was going through my 11 year old daughter’s paper work from her past school year today and I found this. I asked her permission to publish it on my blog.

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I also came across several instances where she had to write about her family. In each instance she included Leah and said that she had three siblings. I thought that all of that was so beautiful and I felt so proud of her.

Adults have told me of instances where children they knew had died years ago and their names were no longer mentioned. I’m so glad that our youngest is comfortable talking and writing about her sister who loved her so very much.

I also know from talking to other people, that in years gone by, children were shielded and “protected” from the so-called unpleasant realities of life. This was sometimes done by sending children away to stay with a relative when there was serious illness or death in the house.

Some adults who experienced this as children have told me that they found being excluded from what was happening, a hugely traumatic experience, as they were denied the opportunity of being able to process what was happening and of being able to say goodbye to their loved one. They then found it extremely difficult to work their way through the stages of grief and it compounded their distress.

I never knew that our story was going to end like this and I certainly didn’t have any time to work out a “game plan” for the best way to do things. However, a combination of divine inspiration and mother’s intuition, led me to involve all of our children in Leah’s journey as much as possible.

When we received that first phone call with Leah’s diagnosis on April 19th 2013, the consultant in Belfast suggested “tissue typing” our other two teenage children but not our youngest, who was only nine at the time. I immediate disagreed with him and told him “you can’t make a difference in our children“.

When I got off the phone and discussed it with our youngest, she demonstrated a mature understanding of the situation and said that she wanted to be part of whatever was needed to save Leah’s life.

Miriam getting blood taken to see if she was eligible to donate her bone marrow to Leah in April 2013
Our youngest getting blood taken to see if she was eligible to donate her bone marrow to Leah in April 2013

She also accompanied Leah on one of her appointments to the Sperrin Oncology/Haematology Unit in Altnagelvin Hospital in early July, past the sign that reads “No Children Allowed.” Technically speaking Leah was also still a child herself.

In early June when I received a telephone call with a summons to Bristol for an Outpatients Appointment for Leah and Simon, I instinctively asked on the phone if we could bring our youngest with us. I was told that it would be no problem, as there would be a Play Therapist there to keep her amused.

It was so important for her to see firsthand what a lovely “child friendly” hospital that Leah would be having her treatment in. The lively presence of our youngest on this trip, lifted all of our spirits too, as she was the only one who hadn’t sat through a depressing discussion of Leah’s diagnosis and prognosis.

On the 21st July 2013, our youngest flew to Bristol with Leah and me. On Monday morning the 22nd July, our youngest said goodbye to Leah and me at the door of the Bone Marrow Transplant Unit. It was only meant to be a temporary goodbye, as Leah expected to just get a test dose of chemotherapy and be back out again within hours. However she very quickly developed severe septicaemia and became very seriously ill.

A friend looked after Miriam and took her Gromiteering.
A friend looked after her and took her Gromiteering.

Our youngest next saw her sister at the end of August. Leah was an inpatient on the Adolescent Ward by then, but she was allowed out to Sam’s House, the Clic Sargent Hostel, for a few hours each day.

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The first day, Leah and her younger sister had great fun together, using the recreational facilities at Sam’s House. By the last day Leah was starting to become unwell and she had a lot less energy.

Our youngest and her dad visited again in October, when Leah was very unwell. Leah was overjoyed to see them both. She wasn’t well enough to leave the hospital, but they did girlie things together in Leah’s hospital room, like painting each other’s nails. Our youngest also helped me to shop for treats for Leah, while her Dad kept Leah company.

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Once Leah and I finally got home in November, Leah and her younger sister became inseparable. Every day when she got off the school bus, she headed straight for Leah’s bedroom and there she remained until I chased her off to bed.

One weekend, for a special treat, our youngest was allowed to have a sleepover with Leah. Leah’s immune system was very weak, so I was of course very particular about ensuring that her younger sister adhered to strict standards of hygiene.

The last ever photo taken of Miriam and Leah together on the 20th December 2013.
The last ever photo taken of Leah and her younger sister together on the 20th December 2013.

On Leah’s last evening at home, Thursday 26th December 2013, Leah cooked a cheese omelette for herself and her younger sister. Then they played together on Leah’s new WiiU. Their laughter rang out through the house.

I write here about how Leah pleaded in ICU for younger sister to be allowed in to visit her. I still feel sad about that.

A few months after Leah died, her younger sister was given the opportunity of attending an Art Therapy group for children dealing with loss, at the ETHOS Family Support Hub in Shantallow.

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She doesn’t like talking about her feelings, but she loves arts and crafts.

Attending this group seemed to help her to find a way of expressing her love for her sister through arts and crafts. After attending this group, she started printing off lots of photos of her sister and making up collages of these photos for her bedroom walls.

I’m glad that she’s found a way of expressing herself that she feels comfortable with.