Breaking Bad News

As most of you already know, Leah’s first blood test was on her fifteenth birthday – New Year’s Eve 2012. She died 16th January 2014. Her illness spanned one year and sixteen days.

In effect, this means that every month contains some kind of ‘anniversary’ – these ‘hidden anniversaries’ vary in terms of painful intensity. I try hard not to dwell constantly on the past or ‘wallow’ in negativity, but some dates and events are so traumatic that they are very deeply etched into my brain.

Sadly, today is one of those dates, one of the many days that I wish I could erase from my personal history because it continues to feel so very painful. Three years ago today I answered a ‘withheld call’ and grappled to process the very unwelcome information that the stranger at the other end spewed in my ear. While I was conversing with this doctor, Leah, quiet and dignified, sat beside me and did an internet search of ‘myelodysplasia’ and ‘bone marrow transplant’ on her smartphone.

I did an internet search today to see what kind of information Leah might have been confronted with that day as she ‘googled’ while the doctor and I talked. The first article that came up was this one that states ‘Myelodysplasia syndrome is rare in childhood, and most children have a rapidly progressive course.’ The second one states that: ‘The disease is most common in adults, especially elderly people, and the course varies, ranging from an acute, rapidly fatal illness to a chronic, indolent illness.’ and ‘Infection, rather than progression to AML, ultimately results in the demise of most patients with MDS.‘ I had to stop there as I could no longer see through my tears.

Six days later, on Thursday 25th April 2013, Leah participated enthusiastically in her annual Girl’s Brigade display, just like she had done every year since she was three years old.

Saturday 27th April 2013, undeterred by her recent diagnosis, Leah had an amazing time away for the weekend with her Girl’s Brigade Company.

I’m told that hospital consultants ( and other senior staff) attend training sessions on how to break bad news to patients. To this day, it remains incomprehensible to me that anyone would think that it’s ‘acceptable practice’ to call a parent who you have never met and deliver such devastating news to a mother and child over the phone on a Friday afternoon.

Here is a portion of what I wrote in my journal later that day:

I did not ‘google’ anything at that stage – I was scared and I didn’t want to know. It was Sunday night before I became aware of how much Leah already knew. I then asked her to show me what she had been reading online and we talked about it together.

I never imagined that anyone but me would ever glimpse some of my journal entries or that a day would come when I would share my thoughts and feelings as openly as I do now. However, writing is therapy. I derive enormous comfort and encouragement from following the blogs of other bereaved parents and some who have been bereaved in other ways. Not in a voyeuristic sense of course, it just helps to know that I’m not alone and that I’m not going crazy.

I follow several blogs of people with a Christian faith and I also follow some blogs that aren’t written from a faith perspective. Sometimes I have the time to read all the blogs that I follow, other times I don’t and I periodically do a ‘catch-up’.

A blog that I have recently started following and that is really blessing me is called  thelifeididntchoose (Walking in the Valley of the Shadow of Death). Melanie writes regularly and her posts are reasonably short and they are easy to understand. She writes from a faith perspective and she is authentic and real about how difficult this road is that we walk on as bereaved parents.

This morning as I sought strength to face yet another ‘hidden anniversary’ I clicked on  Melanie’s blog post from Thursday 14th April 2016. I knew immediately that it was God’s word for me in my situation. She quotes from a book by Nicholas P. Wolterstorff entitled Lament for a Son.

If sympathy for the world’s wounds is not enlarged by our anguish, if love for those around us is not expanded, if gratitude for what is good does not flame up, if insight is not deepened, if commitment to what is important is not strengthened, if aching for a new day is not intensified, if hope is weakened and faith diminished, if from the experience of death comes nothing good, then death has won. Then death, be proud.

So I shall struggle to live the reality of Christ’s rising and death’s dying. In my living, my son’s dying will not be the last word. But as I rise up, I bear the wounds of his death. My rising does not remove them. They mark me. If you want to know who I am, put your hand in.

~Nicholas Wolterstorff, Lament for a Son

I read these words and thought “Yes, that just about sums up how I feel, both the positive and the negative!”

Welcome To My New Look

I don’t really like change, but sometimes change can be a good thing.

When I started this WordPress blog in February 2014, it was because some of you were telling me that you were signing up to Facebook for the sole purpose of gaining access to my writings. I felt embarrassed about this, as I didn’t really want to be recruiting for Facebook.

I had never imagined myself as a blogger, I barely knew what a blog was and I certainly didn’t know how to go about setting up one.

Thankfully with the help of Mr Google and a few YouTube tutorials, I was soon well on my way. It’s been quite a learning curve, but I’ve learned on the job. I am constantly tweaking my old blog posts, as I gradually learn my way around the blogosphere in general, and wordpress in particular and figure out better ways to do things.

Thankfully, almost all of the tools and materials come free – except for my time and inspiration, of course. WordPress has proved an excellent host. The pretty theme that I had been using up until now, was one where much of the customisation was pre-set for me. This arrangement suited me very well when I was starting up, as I would have been totally out of my depth trying to create my own customisation.

However, now that I am gradually regaining the use of my brain, I am keen to personalise this site a little more. I’m enjoying being able to experiment with free tools such as canva and picmonkey, although it is of course quite time consuming trying to teach myself all of these new tricks. I’ve also installed GIMP on my laptop but I haven’t tried it out as yet.

Since I started blogging eighteen months ago, I’ve greatly benefitted from reading a variety of other people’s blogs. I regularly read several blogs, which include My Journey Through Grief Into Grace (kathleenbduncan), Mama’s Haven ~ Grief, Joy, Grace, Mundane Faithfulness, In One Of The Stars I Shall Be Living, Grief Is A Cliche, The Accidental Missionary, Writing On The Sly and many others. When I’m very busy I fall behind on my blog reading and then I do a mega catch up whenever I get a bit of free time.

As I read other people’s blogs, I’m struck by the diversity of layouts and styles that people use. Obviously some styles are only available to premium (fee paying) users, however I gradually became aware that by changing to a different (but still free) WordPress theme, I would acquire a little bit more versatility and freedom.

The photograph used in the header at the top of this page, is one that I took at the top of our road, with my iPhone 5c. It’s a road that I travelled with Leah on many occasions as we headed to her hospital appointments, so it literally does represent a part of our journey. Now, I often travel that way to work or even to the cemetery and of course to many other places as well.

I’ve learned so much since I started blogging, like this:

One small positive thought blog post in the morning can change your whole day.

Or this by Andrew Sullivan:

Blogging is to writing what extreme sports are to athletics: more free-form, more accident-prone, less formal, more alive. It is, in many ways, writing out loud.

Last, but not least – and with this I will finish – I have only recently discovered an author called Anne Lamott. I am currently reading her book Bird by Bird: Instructions on Writing and Life.

Here is an extract (I used Canva to create the image) –

It’s been good to write

I recently had a long and very helpful conversation with a Christian friend who writes about her experiences as a bereaved Mummy and how God has given her the strength to cope.

One of the many things I found interesting in our conversation, is that she didn’t actually start writing until long after her children had died, whereas for me, writing has been one of my coping mechanisms.

When I mentioned this, she said something like, “I didn’t grow up in an era where it was fashionable to keep a journal.”
I laughed and replied “Well actually, neither did I.”

I’ve been scribbling in notebooks since I was thirteen.

At home, or at summer camp, I wrote.

My peers sometimes found this unusual and I was at times questioned as to what all this writing was for.

My young self had no wise words with which to answer them.

I just knew that writing was how I coped, but I couldn’t explain this.

As I got older and life got busier, I stopped writing every day and I only wrote when I was deeply troubled.

Sometimes I wrote often, sometimes I wrote infrequently.

On the day that I received the phone call informing me of Leah’s diagnosis, I knew one thing for sure, that I needed to start writing.

I started a new notebook that very day. I chose a “Project Book” – one that was divided into five sections.
Section One was kept for hospital appointments. Before every appointment, Leah and I agreed what questions she wanted me to ask and I wrote them into this notebook.

It became quite a laugh at our appointments, as the doctors and nurses would glance anxiously at my notebook, to see if we had a full page, or a half page, of questions for them to answer.

I remember on one occasion in Bristol, our favourite Doctor was on duty. Leah and I were ready for him with a full page of written questions. He good naturedly accepted the armchair that we had pulled up to the bed in anticipation of his arrival. He knew that there would be no hope of escape, until every question had been discussed.

I’m so glad now to have all of these recorded memories.

Deep distress and trauma blurs our memories and can leave blank spots.

Many times since Leah has died, I’ve poured over my notebooks, trying to piece things together, trying to make sense of it all.

Sometimes I read things that surprise me, even now.

We received Leah’s diagnosis on Friday 19th April 2013. I know that I googled it that weekend. I’m a nurse so I have some understanding of medical matters. Yet, on Tuesday the 22nd April one of my written questions was “Is this 100% curable?” How could I ever have been so naive?

When I look back now I can see how hope/faith/denial can get all jumbled up.

That’s ok.

We have to stay sane.

We have to keep hope alive.

Many times over the years, in my work with families, my colleagues and I have wondered how parents can seem oblivious to how unwell/delayed their child is, when it seems so blatantly obvious to us.

Reflecting on my own journey through Leah’s illness and reading my own journals, gives me some insight into all of this.

Sometimes the truth is so painful, that we just aren’t ready or able to take it on board.

What the doctor told us on Tuesday 22nd April was awful, but within weeks I was able to bury it and move on a little bit.

Then in June, when we had our first outpatient appointment in Bristol, the consultant there told it to us all over again. I was nearly physically sick. I didn’t want to hear it. I didn’t want to believe it.

My writings tell me something else too though.

They tell me of God’s grace and His faithfulness and the loving kindness of the many people who have blessed us along the way.

One of Leah’s and my favourite Matt Redman songs says it better than I can:

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

The Project Book also has a pouch where I stored some of the beautiful cards and written prayers that people sent to us, along with hospital appointment cards.

I kept one entire section for encouraging Bible verses and quotations that people sent to us.

Here’s two by Rick Warren that I found written in there:

The ultimate test of faith is not how loudly you praise God in happy times but how deeply you trust Him in dark times.

Job is a book of questions, most left unanswered. The most important one is this – will you serve God no matter what happens? 

For me, I can truly say, it’s been good to write.

“I know the journey is too great for you”

I don’t really have a plan to write on this “Journey” page on a regular basis, but some days the words just bubble up inside of me & overflow onto my iPad.

When Leah was battling with her illness I chose my words so carefully both for her sake & for the sake of our loved ones reading my posts, as I never wanted to take away hope or cause unnecessary anxiety.

Now there are days when I feel compelled to fill in the gaps & tell the story behind the story.

Some of you leave beautiful comments, saying that my posts are helpful.

I would love to think that the things that I share here could somehow be an encouragement to others in the trials of life.

Hopefully if what I have to say here is not helpful to someone then those people will vote with their feet (or fingers) & just not visit this page.

When Leah was first diagnosed she was given a gift of Rainbows for Rainy Days by its author Catherine Campbell who has buried two of her three children.

This book contains 40 devotional readings which we used in Bristol and then put on our bookshelf.

When Leah was admitted to ICU we decided to start using the book again.

On the 6th January Leah was critically ill and I was reading out loud to her from this book before the doctor came to give her a general anesthetic followed by a bronchoscopy and a lavage.

Our scheduled reading for that day was Day 5 based on 1 kings 19.

I was normally very good at controlling my emotions in front of Leah but my voice quivered with emotion as I read Leah the following

“God utters some of the tenderest words in Scripture to this broken servant – I know the journey is too great for you.”

The words seemed so relevant to Leah’s situation that I was overcome – concerned that these words might somehow have a deeper almost prophetic significance.

Leah was too weak to open her eyes but she heard the emotion in my voice and reached out her two arms and gave me a hug.

Yes, the journey was too great.

Leah said at the time of her diagnosis that God had a plan for her life and I believe that God’s plan for Leah’s beautiful life was fulfilled in the 16yrs and 16 days that she spent on this earth.

Although the emotional pain of losing Leah is worse than any physical pain I have ever experienced I wouldn’t bring her back because I know that she’s in a better place where her body is no longer broken.

Click here to visit Catherine Campbell’s website

A beautiful Life

Many people have thanked me for writing so faithfully on our “Journey” page on Facebook and have asked me “How did you do it?”.

For Leah and I, it was part of our coping strategy.

When Leah was first diagnosed and she found out that she would be going to Bristol for her treatment, I suggested to her that there may be times that she would be very sick and wouldn’t be able to keep her friends updated and that we needed some kind of private space that either of us could write on to keep people in the loop.

Leah and I chatted about this for a bit and then she set up the “Journey” page.

We quickly discovered that the communication was two-way as people posted encouraging comments, song suggestions, prayers and/or verses of Scripture for us.

The “Journey” page became a real life-line for us during some of our more difficult times in Bristol.

When Leah was in ICU in Belfast the rules of the unit allowed me to use my iPad but not my mobile phone while sitting with her, so the “Journey” page became a vital part of my support system.

One of the challenges when writing updates for the “Journey” page when Leah was in ICU, was to give enough information that people could pray intelligently for us but not to give so much information that I took away hope and generated panic.

While Leah was in ICU, I was told many times by the doctors that she was unlikely to recover, but I was hoping and praying for a miracle.

On Saturday 11th January 2014, when the Dr told me that Leah’s X-Ray showed a slight improvement (for the first time since admission) I thought that this was the miracle coming through and I was very excited.

When I arrived at ICU on Sunday morning the 12th January and Leah’s condition had deteriorated significantly, I started to realise “We aren’t getting this miracle” and my heart felt very heavy.

By Monday 13th January, Leah’s medical condition had deteriorated a lot more and I thought “My child is dying and I don’t want her to die in a critical care environment.”

I asked the staff about my options for end of life care for Leah, but apparently there weren’t any options – never before had any patient on a ventilator been transferred out of that ICU to spend their final hours elsewhere.

Thankfully God heard the cry of my heart and I was contacted by a good friend/work colleague from home, who put me in touch with an excellent Dr in the WHSCT who specialises in Paediatric Palliative Care.

She dropped everything and drove from Limavady to Belfast to discuss end of life options with me and the staff in ICU, at very short notice.

I said that obviously I didn’t want my daughter to die, but if death was inevitable, I wanted Leah to die in peace and dignity, surrounded by our large extended family. Leah was happiest when surrounded by the people she loved.

The lovely Dr from the WHSCT very graciously explained to the staff in the ICU how it was possible for Leah to be transferred to the Children’s Hospice for her final hours and she gave them the necessary names and contact details.

By Wednesday 15th Jan, Leah was very weak. The Dr on duty that day – it was the nice Cork Dr – advised that our end of life care plan needed to be put in place for Thursday 16th Jan, although he wasn’t convinced that Leah would live that long or that she would survive the journey to the Hospice.

I asked family and close friends to pray that it would be possible for our end of life care plans to be carried out, both for Leah’s sake and also for the benefit of those who loved her and needed an opportunity to say goodbye. Leah had been unconscious since Monday and she was in no distress.

The lovely Cork Dr and a lovely nurse came with Leah and I in an ambulance to the Children’s Hospice on Thursday morning 16th January 2014.

Some of Leah’s “surplus” tubes were removed before she left ICU.

Approximately 30 family members of all ages along with her boyfriend Nic and his family, were waiting for us when we got to the hospice. Our TYA (Teenage and Young Adult) Cancer Nurse Specialist and Clic Sargent Social Worker, who had supported us along the way, were with us too.

The Children’s Hospice was such a lovely calm, friendly, welcoming place. Leah was made comfortable in a pretty bedroom with a sign on the door that said “Leah’s Room“.

We were all able to spend some time with Leah and with each other, before it was time for Leah’s life support to be switched off.

The Spotify playlist on Leah’s iPAD was playing her Christian music softly in the background. Various people who loved Leah were holding her hands, stroking her arms, and stroking her head.

Leah was unconscious and peaceful.

The end of life process lasted about 40 minutes and different people noticed different songs that played during this time.

The song that stood out for me 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, your beautiful, oh, your beautiful, oh, your beautiful life”