He Knows the Way that I take

He Knows the Way that I take

 

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As this is a holiday weekend here I’ve had more spare time than usual, so today I decided to take myself to the local woods  for a walk. As soon as I arrived there, I realised that it was during this very week in 2013 that I had walked there with a friend while Leah and Nic had their photoshoot done. Alison Hill did an amazing job of those photos and Leah loved them.

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I was so emotionally fragile at that time (shortly after Leah had been diagnosed) and a walk in the woods with a friend was just what I needed. As all of these memories came flooding back I was glad that the woods were very quiet today. I needed to be alone with my thoughts. As I walked along I enjoyed taking photos of anything that caught my eye:

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When I came to my favourite bench, I sat for a while and studied the photos that I had taken. Most of them were of the path. I reflected on this for a while, then I used my phone to look up Bible verses that mention the word ‘path’. I was somewhat surprised to discover that the word path is used quite often in the Bible. Here are some of the verses I found:

You make known to me the path of life;

   you will fill me with joy in your presence,

   with eternal pleasures at your right hand.

Psalm 16:11 NIV

 

Your word is a lamp for my feet, a light on my path.

Psalm 119:105 NIV

 

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Proverbs 3:5-6 NIV

 

Earlier today I had also read this excerpt from Streams in the Desert which mentions paths:

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After coming home from my walk I looked in my diary to see exactly when I had taken Leah for her photoshoot and what I had written about the event – I had certainly been in a very distressed state that day due to all that was happening. As I glanced over some of my journal entries, my attention was suddenly caught by something I had written on the 5th January 2014 while I was sitting with Leah in the ICU in Belfast City Hospital. Leah’s diagnosis had recently changed from PCP pneumonia to probable pneumonitis. On the 4th January, one of the consultants had taken me aside and had spelled out in words of one syllable what the implications of this new diagnosis were i.e. that Leah was very unlikely to survive. I was still praying and believing for Leah to be healed but as I wrestled with God regarding all that was happening, I had transcribed some words of an old hymn into my journal:

Yea, choose the path for me, although I may not see,

The reason Thou dost will to lead me so.

I know the toilsome way will lead to realms of day,

Where I shall dwell with Thee, O mighty Saviour.

 

There is that ‘path’ word again, all of this serves to reinforce for me the truth of Job 23:10; “He knows the way that I take” and He is with me every step of the way.

 

Lessons from a Sticky Plaster

Lessons from a Sticky Plaster

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Today I opened one of the notebooks that I used for note taking during Leah’s many hospital appointments in 2013. Immediately my eyes were drawn to a sticky plaster carefully folded into a heart shape.

I instantly remembered where it came from – it was Friday 14th June 2013 and the five of us (our eldest was away working in the USA) were on our first visit to Bristol Children’s Hospital. As on every one of Leah’s hospital visits, she had blood taken that day. This was the first time that Leah had genetic testing done and the subsequent results were very significant. We also gave our consent that day for some of Leah’s blood to be frozen and kept at the hospital for future research.

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After the nurse on Oncology Day Beds had taken blood from Leah she placed this cute sticky plaster with animals on Leah’s arm. Leah loved animals and she was very keen to visit Bristol Zoo or even make a return visit to Belfast Zoo – an ambition that was never realised sadly. Leah’s consultant in Belfast City Hospital informed her in mid December 2013 that her immune system could now cope with a trip to the Zoo. However with all the busyness of Christmas we did not have time to plan this before she died four weeks later – we always thought that there would be more time.

A few hours later this little plaster came off and Leah folded it neatly into a heart shape and presented it to me with one of her little smiles. I tucked it inside my notebook and there it sat until now. Another of Leah’s little ‘love notes’!

This also reminds me of God’s many ‘love notes’ to us. One of our favourite passages of Scripture to read during Leah’s illness was the last part of Romans Chapter 8. Leah and I drew great comfort from the fact that neither disease, nor chemotherapy, nor even death itself, would ever, could ever, separate us from the love of God that is ours in Christ Jesus.

Romans 8:38-39
“And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”

Tears of joy and tears of sorrow

Tears of joy and tears of sorrow

Today I read the blog post of a good friend and fellow blogger and my eyes were drawn to this photo. She didn’t say which hospital in N. Ireland that the photo had been taken in but my heart was already pounding in my chest and my eyes were filled with tears, before my mind had even formed the words Belfast City Hospital.

Endoscopy Waiting Area BCH

The ICU where Leah was treated for 2.5 weeks before she died had no Relatives Room within the Unit and worse still – from my perspective – no Visitors/Relatives Toilet. Every time (day or night) that I needed to use the toilet, I had to leave the ICU and make my way through the long convoluted corridors of the hospital, to the public toilets in the main Foyer, via the double doors in this picture. These toilets were very busy and in constant use, therefore the hardworking hospital cleaning staff were unable to maintain them in pristine condition, although they were cleaned regularly. I detested using them as I was terrified of carrying an infection back to my immunocompromised and critically ill daughter.

Each time on my return to the ICU I had to ring the bell first at the outer door and again at the inner door, then wait to be granted permission to ‘visit’ my desperately ill daughter, who disliked me leaving her. This was the hardest part, knowing that Leah was waiting on me to return, but not knowing if I would be allowed in, or if I would be asked to wait in the corridor.

I quickly learned that the best thing to do was to restrict my food and fluid intake so that I NEVER voluntarily left ICU – the only occasions that I left were when requested to do so. Unfortunately, due to the policies and procedures of ICU these occasions happened regularly throughout the day. I then sat on a hard plastic chair in the corridor outside ICU, waiting anxiously for that precious moment when I would be allowed back into Leah’s cubicle.

I found that having a cup of hot cinnamon milk for breakfast filled me up and didn’t make me run to the toilet. At lunch hour I often had a plain bun and a soft drink, like 7up. On one occasion during doctor’s rounds, an ICU consultant lectured me on the importance of looking after my health so that I could take care of Leah. A few days later when I was sitting  in the corridor outside ICU, this same consultant came along and noticed me eating a bun. He called over to me “Look at you eating junk food. That’s exactly what I was talking about.” I flinched with embarrassment and the indignity of it all, but I managed to hold back the tears until he was out of sight. I don’t honestly think that he meant to be cruel or unkind, I just don’t think that he had any idea of what it’s like to be the mother of a dying child and to feel as if all of your dignity and privacy has been stripped away, along with so much else.

Eventually, a few family members started to bring me in home cooked food some evenings, which I really appreciated. In order to get some measure of privacy,  I ate it while sitting on these softer seats in the Endoscopy Waiting Area, instead of in the corridor outside ICU. Any time that I needed a private space to talk to visitors or to my Support Worker from the NICFC  we also came and sat in this Endoscopy Waiting Area adjacent to the hospital foyer. This is where I sat on Monday 13th January 2014 as we discussed Leah’s end of life care and I shared my distress and frustration at having been told that we had ‘no options – I had been told that Leah was going to die in ICU there in Belfast City Hospital even though we had said that we wanted to take her home or to the Children’s Hospice.

Some weeks after Leah died I approached the management of Critical Care in the Belfast Trust  regarding various issues that I wanted addressed. I assured them that I had no issue whatsoever with the medical care that Leah had received as I knew that everything possible had been done to try and save her life. I referred to the kindness and compassion shown by so many of the staff who had cared for my daughter.  I deliberately did not address issues pertaining to the fabric of the building, lack of facilities etc. as I knew that their likely response would be ‘lack of funding‘. I assured them that most of the changes that I wished to discuss wouldn’t cost any money to implement. One of these changes was that I wanted for parents/carers of teenagers and young adults being cared for in Critical Care to be allowed to come and go freely. I said that it was an absolute disgrace that there had been some days when I felt that I had spent more time sitting in a hard plastic chair in a hospital corridor than at the bedside of my dying child.

In December 2015 I received an email from a senior member of staff that contained the following sentence: when we had a 16–year old in the (Intensive Care) unit a few weeks ago, her parents came and went freely without an eyebrow being raised – it was just accepted as the right thing to do.

I cried when I read this – tears of sadness for what we didn’t have when Leah was dying – but also tears of enormous joy and relief, knowing that no other families will endure the enforced separations that I experienced.

 

Forget Me Not 2016

Forget Me Not 2016

 

Yesterday, we attended the annual Forget Me Not Remembrance Service at the N.I. Children’s Hospice. As always, it was very moving and very beautiful.

My favourite part this year was the staff choir. There is something incredibly special about having the staff who cared for your child in their last days/hours ministering to you in song.

The staff take the entire service, which is also very special. Their loving support for the families of the children they have cared for, continues for as long as it is needed. This year the staff choir sang a song entitled This is the Sound of One Voice:

This is the sound of all of us
Singing with love and the will to trust
Hear your voice though your heart is crushed
This is the sound of all of us
This is the sound of all of us

One of the staff members who spoke told us that to care for someone is to learn the song that is in their heart and to sing it to them when they have forgotten it. How true this is; these people possess so much wisdom. Another one said that there will be days when there won’t be a song in your heart, but sing anyway. This resonated with me, as music has been so much a part of my journey with Leah and her illness.

To care for someone

During the refreshments afterwards the nurse who cared for Leah on the 16th January 2014 came to speak with us. We had never spoken to her since that day, she talked about the positive impact that Leah’s last moments had on her own life. Her words blessed me immeasurably.

She also told us about having made a poster for the door of Leah’s room that morning before we arrived, with One Direction on it. However, as family members started to arrive, she spoke to them to find out about Leah’s likes and dislikes. She soon discovered that Leah definitely wasn’t a One Direction fan, but that she did love music. She scrapped the original poster and made a new one.

Poster

 

I’m very glad that she did, because that poster meant so much to me. While Leah was in ICU, she had to wear a hospital gown because of all the tubes that were connected to her. On one occasion, I returned to Leah’s room to find that the nurses had dressed my unconscious daughter in a gown that was completely imprinted with the words hospital property. I was absolutely devastated. I stood there staring at it in horror, as I silently asked myself “Is this what my gorgeous daughter has become, a piece of hospital property?

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When we arrived that day at the Children’s Hospice for Leah’s end of life care  and I saw the poster on her bedroom door with her name on it, I knew that we were in the right place. Before we left, I went back down the corridor and photographed this poster, because it meant so much to me.

This nurse also told us about a little boy who hadn’t much time left and wanted to pet a giraffe before he died. He was much too ill to be taken to Belfast Zoo  so they contacted the Zoo and arranged for a real live young giraffe to be brought to visit this child in his room at the Children’s Hospice – isn’t that just so amazing??!!

After leaving the Hospice we called at Monkstown Woods  to visit the Butterfly Grove. Leah is remembered there because of the fundraising that so many of you have done in her name for the Children’s Hospice.

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Then it was time to for us to go to Leah’s Auntie Evelyn’s house for tea. Evelyn had invited some other family members to be there also, along with Leah’s ‘adopted’ Auntie Marion. A few years ago Leah asked Evelyn’s friend Marion if she could ‘adopt’ her as an auntie.

We had lovely food, sat in the warm sunshine – yes the sun does occasionally shine in Ireland – and we enjoyed each other’s company. When I thanked Evelyn for providing such a lovely tea for us, she reminded me that it was exactly what Leah would have wanted; Leah was always happiest when surrounded by family and friends and she loved good food.

I think that we honour our loved ones best when we take the time to be together and do those things that they enjoyed doing.

Meme

Breaking Bad News

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.

Climbing wall
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:

Blog post 19 April 13

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.

Me too

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!”

The Listening Life

The Listening Life

Today when walking down the corridor at work, I bumped into the specialist in paediatric palliative care who was enormously helpful to us in organising Leah’s end of life care.

Straight away I felt the pangs of heartache, as my heart was transported back to the 14th January 2014 in Belfast City Hospital. I silently asked myself “Must it always be this way, will there always be pain triggers waiting round every corner?” Then I remembered hearing recently that every event is actually 20% fact and 80% perception, so I started talking to myself in my head about how blessed we were to have had the support and expertise of this amazing woman and how much her input meant to us at the time. Within minutes I was feeling more positive.

A couple of hours later I was going down the corridor and I met her again. She stopped and asked me how I was. I looked in her eyes to see if she was just being polite or if she really wanted to know. Her facial expression told me that she really cared, so I told her the truth. She also enquired about each family member. I briefly told her about some of the ways in which we are struggling to rebuild our lives while battling the pain of grief and loss.

Then, just like she did in the corridor of the City Hospital 26 months ago, she hugged me and said “Let’s say a wee prayer.” For a few hallowed moments she quietly lifted up each member of my family to God in prayer. I felt God’s peace touch my heart.

She’s a very busy doctor, with a very busy agenda, but somehow in the middle of her very busy day she took the time to minister to my heart. How long did it take? Ten minutes perhaps? Yet it meant so much to me.

I felt blessed and encouraged by her actions, but I also felt challenged. How often am I so caught up with my own agenda – however good and noble that may be – that I allow no time for the unexpected, no time for ‘God’s agenda’?

A few weeks ago I was scrolling through the Facebook page of author Cheri Gregory  when my attention was caught by a quote from a book called The Listening Life: Embracing Attentiveness in a World of Distraction by Adam S. Mc Hugh.

The Listening Life 2

I immediately headed over to Amazon, where I read this about The Listening Life:

“Be quick to listen, slow to speak.” James 1:19 How would our lives change if we approached every experience with the intention of listening first? In this noisy, distracting world, it is difficult to truly hear. People talk past each other, eager to be heard but somehow deaf to what is being said. Listening is an essential skill for healthy relationships, both with God and with other people. But it is more than that: listening is a way of life. Adam McHugh places listening at the heart of our spirituality, our relationships and our mission in the world. God himself is the God who hears, and we too can learn to hear what God may be saying through creation, through Scripture, through people. By cultivating a posture of listening, we become more attentive and engaged with those around us. Listening shapes us and equips us to be more attuned to people in pain and more able to minister to those in distress. Our lives are qualitatively different indeed, better when we become listeners. Heed the call to the listening life, and hear what God is doing in you and the world.”

I was ‘hooked’ and ordered it immediately. When the book arrived I started reading with great enthusiasm and got as far as page 50, then unfortunately I got totally distracted by other books that I was reading simultaneously and forgot about The Listening Life. This is by no means a negative reflection on The Listening Life; I regularly have three or four books on the go at any one time and I dip in and out of each of them depending on my mood!

I absolutely love books, I only wish that reading them were as easy as buying them! However, today’s encounter reminded me of why I bought The Listening Life and how important it is to listen – really listen – to God and to each other.

P.S. Click here to read an excerpt from The Listening Life on Emily P. Freeman’s blog.

Mother’s Day Weekend 2016

Mother’s Day Weekend 2016

We as a family are indebted to the Northern Ireland Cancer Fund for Children for their help and support. We have once again benefitted from one of their amazing therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

I’ve previously written about our trips to Daisy Lodge in Daisy Lodge, Back to RealityParenting Teenagers, The Gaping Hole of Grief, and in A Haze, a Daze and a Maze.

On Tuesday 30th April 2013, when Leah’s Haematology Clinical Nurse Specialist at Altnagelvin Hospital told me about the NICFC and suggested referring us to them for support, I had no idea what that support would look like.

Leah with flower in her hair
Leah before she became ill

Initially we were allocated a Specialist Worker. Our Specialist drove the 70 miles from Belfast to meet with our family and we warmed to her straight away. Our initial contacts with her were of the “getting to know you” variety, as she assessed what our needs were and explained to us what help was available.

When Leah and I returned from spending 14 weeks in Bristol, traumatised from all that had happened, our Specialist was there to support us. Within days she pulled up in her car and took Leah and I out for afternoon tea in a quiet location. The cafe had a gift shop attached so we browsed there too. After so many weeks of sickness and hospitalisation, it felt abnormal to be doing normal things, but it was very helpful to be doing them in the company of somebody who understood our journey and who could support us emotionally.

Leah was immune compromised and unwell and she had to spend a lot of time at home in her bedroom. Our Specialist understood how boring this would be for a teenager, she talked to Leah to find out her interests and started her on jewelry making. Our Specialist provided the materials and Leah was able to make gifts for some people that Christmas.

Then, during the 2.5 weeks that Leah spent in ICU in Belfast City Hospital before she died, our Specialist spent time with me, in the hospital cafe, providing me with emotional support and giving me time to talk.

Leah 20 Dec 2013

Leah in December 2013, three weeks before she died

After Leah died, our Specialist kept in touch with us and she ensured that we as a family availed of the therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

Daisy Lodge
It’s very difficult to be a parent when you’re grieving and your heart is broken – potentially every family member becomes ‘lost’ and isolated in their grief and sadness. It’s very difficult to do things together as a family when the very act of doing so is such a painful reminder of the one who is missing.

Coming to Daisy Lodge as a family has become a vital part of our healing. When we are there, the five of us sleep in adjoining rooms so we are constantly in close contact.

All meals are provided so there isn’t the distraction of shopping/preparing food/cleaning up – we are there simply to enjoy each other’s company.

While staying at Daisy Lodge, parents and adult children are offered a complementary therapy session (massage/reflexology), to ensure maximum relaxation. There’s usually an opportunity for the Mum’s and older girls to get their nails or makeup done as well.

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Always, in the background, the therapeutic specialist staff are available to listen and to support. There are optional group activities that all the family can take part in. It really helps to know that on all occasions you’re in the company of people who understand; whether you are interacting with the other families staying there or with the courteous and compassionate staff.

This past weekend our girls played board games in our bedroom on the Saturday morning – that would NEVER happen at home.

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Saturday afternoon all five of us went for a walk at Tollymore Forest Park, when we are at home we’d be doing well to even get two family members agreeing to do anything together.

At Tollymore, Simon and Miriam displayed a newfound interest in nature photography!


We chatted, we ran, we laughed, we remembered, we healed another little bit.

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Then we (minus Simon – his computer beckoned) headed into Newcastle for Maud’s Ice-cream – it was yummy!  

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After a delicious evening meal back at Daisy Lodge (we will be rolling home) Miriam, Rachel and I put on Lush face masks and then they both gave me a massage as one of my Mother’s Day treats.

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After this, Horace and Rachel headed off to use the sauna downstairs.

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Later on Horace and Simon played a game of pool together. I was feeling very relaxed (!) and said that I would just lie in bed and rest my eyes for a little while. I must have been very relaxed because I fell into a deep sleep and had the best night’s sleep that I’ve had in ages. I didn’t even hear any of them coming to bed.

Sunday morning (Mother’s Day) us mums had a choice between getting our makeup or our nails done. I already knew what I wanted. Leah loved painting her nails and she used to paint my nails too. I seldom wear nail varnish since she died. Getting my nails done would be a special way of remembering her on Mother’s Day.

Each mum also received a gift bag of treats. I waited to open mine until I was back in the room with my girls. Rachel and Miriam gave me a Yankee Candle. I love candles.

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Then there was just enough time for a relaxing bath, with one of the Lush bath bombs that my eldest gave me for Christmas, before heading down for dinner.

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Sunday lunch, as always, was truly scrumptious.

Sadly after dinner it was time to pack up and say goodbye – Rachel back to University life in Belfast and the remaining four of us back to our home where our two younger children rapidly became their usual monosyllabic selves and retreated to their caves bedrooms absorbed in their electronic devices. However, I feel so rested and relaxed and I have lots of happy memories and gorgeous photos.

The Cancer Fund for Children support:

  • Children who have been diagnosed with cancer
  • The siblings of a child who has been diagnosed with cancer
  • The parents of a child who has been diagnosed with cancer
  • A child whose parent has been diagnosed with cancer

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We as a family very much appreciate the fundraising efforts of so many people who have walked, swam, ran, cycled, abseiled, done parachute jumps or given their loose change to support the Cancer Fund for Children.You are helping to bring healing to families whose lives have been ravaged by a cancer diagnosis.

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The Bells of Christmas

The Bells of Christmas

Christmas bells

Christmas Eve – this time two years ago the rest of the family moved in to our new house. All six of us slept together under the one roof for the first time in six months. I went to bed feeling so happy, so content, so ‘full’.

Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.

Leah in ICU


Every time Leah’s blood oxygen levels dipped, the monitors chimed and my heartbreak intensified. For the first five nights I slept in a chair beside Leah. During one of these nights there was a medical crisis and the monitors alarmed almost continuously. In the morning the staff looked at me in amazement and asked me how I had slept through the whole commotion. I shrugged my shoulders and gave a vague answer. In actual fact, I had been well aware of what was happening but I had kept my eyes closed and had held my daughter’s hand (whenever I wasn’t in the way) while praying silently. I was worried that if the staff knew that I was awake that they would put me out of the room and then I wouldn’t be there to comfort Leah.

Many days as I sat quietly holding Leah’s hand, with her favourite music playing softly in the background, the chimes of the monitors would intrude unpleasantly on our thoughts – reminding us of what we didn’t want to be reminded about – that Leah’s life hung in the balance.

Finally on the 16th January 2014, when Leah had been transferred to the Children’s Hospice for her end of life care, a monitor started to sound an alarm as the life seeped slowly from Leah’s body – swiftly and silently the doctor pressed the mute button on all of the alarms. We didn’t need them now, as sadly for us, the time had come to let Leah go peacefully into the waiting arms of her loving Heavenly Father.

Now I live and ‘celebrate’ Christmas in a dichotomy – one part of me is overwhelmed with the sadness of Leah not being here, yet the other part of me celebrates the birth of the Christ Child and the many blessings with which God has enriched my life.

Each one of our four children is a blessing in my life. My friends and my family who surround me with love and comfort are a blessing. Having a job that I love and work colleagues whose company I enjoy is a great blessing. I have a beautiful house which is a blessing.

Let the words of Chris De Burgh be my Christmas greetings to you, my faithful readers:

The Bells Of Christmas

If you know someone who is lonely this Christmas,
Reach out a hand and open the door,
Bring them inside in the spirit of Christmas
And show what lies in store;

If you know someone who’s forgotten that Christmas,
Will always shine in the eyes of a child,
Open their hearts to the memories of Christmas
And take them back in time;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Let the light that shines with the wonders of Christmas,
Fill every heart all over the world,
Let us believe in the spirit of Christmas
And dream of peace on earth;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Have a very Merry Christmas everyone,
(Ring the bells)
Celebrate the coming of the newborn son,
(Merry Christmas)
Everywhere this happy day we have begun,
(Ring the bells)
To ring the bells of Christmas,
(Merry Christmas)
Ring the bells, ring the bells!

 

Leah and Timothy

Leah and Timothy

Timothy Jan 2013

While browsing through photographs earlier I came across this photograph. It gripped me with it’s simplicity. It was Leah with her little cousin Timothy who she absolutely adored.

My iPad tells me that this photograph was taken at 11.20am on the 2nd January 2013. Leah took the photo but I can remember very clearly the events of that day and exactly what I was doing around that time.

I was taking a phone-call from our GP who had been contacted by the haematologist at our local hospital regarding Leah’s blood tests, to say that there was a possibility that Leah may have leukaemia or something similar. The doctor wanted me to bring Leah to the He20130102_115913alth Centre straight away.

I informed the doctor that Leah had just left to have lunch in Limavady with her sister and her cousins, as a treat for her fifteenth birthday which had been a couple of day’s previous. I said that I didn’t want to spoil their fun and I would bring her down as soon as they got back.


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The GP said that the haematologist dealing with this was going on holidays to the South of Ireland at 6pm and he was very keen to run a range of blood tests on Leah with a view to making a diagnosis, before he left for his holidays. I insisted that I wasn’t willing to interrupt this special time that Leah was having, but that I would have her at the Health Centre by early afternoon.

Writing all of this in the cold light of day, knowing as much about blood cancers as I know now, my response sounds ridiculous. However, at that stage it seemed preposterous to me that there could possibly be something seriously wrong with one of my children. I wasn’t going to spoil a special birthday treat just so that somebody could draw more blood from her.
2012-05-13 20.48.52In retrospect I have no regrets either – although I would NOT advise anyone else to adopt such a cavalier attitude – time is indeed of the essence with some leukaemias. Leah loved her little cousin Timothy so much. Six months previous to this, Leah had spent a week in Donegal with Timothy and his mum Paula. Afterwards she had written in her diary “I stayed this week in Donegal with Timothy and I love him more than ever.” 

Leah talked about Timothy frequently when we were in Bristol and she couldn’t wait until she 20130127_132426would get to see him again. There was only one problem though, young children are often unwell and the kind of viruses that they contract are the ones that posed the greatest risk to Leah in her severely immunocompromised state. Our consultant regularly warned her “One chance encounter with a snotty nosed kid could kill you, you know.”

When we returned from Bristol, Leah was desperate to see her beloved Timothy. Unfortunately, like many young children in winter, he was prone to having a runny nose. It wasn’t one that cleared up in a hurry either. As Christmas approached, Leah pleaded with her haematology consultant to be allowed to attend the family get togethers that we always have at that time of year and especially to be allowed contact with Timothy, who unfortunately still had a runny nose, but was otherwise very well.

Our consultant, who had been lecturing her about the importance of re-establishing some normality in her life, responded to this request by asking “Do you HAVE to go to these family get togethers?” to which I replied “Yes, actually, we do!” It had now been six months since Leah had seen many of her extended family and she craved this contact.The consultant replied that Leah could go to the get-togethers and see Timothy, on the condition that she didn’t hug him, kiss him or have any face to face contact. We agreed to this.

A little while later another medical professional came into Leah’s room on the Bridgewater Suite to carry out a procedure and her first words to Leah were “I believe that you’re going to have contact with a child with a runny nose?” I didn’t say anything, but it really irritated me, because on the one hand they were telling Leah that she was getting better and that she needed to start normalising her life, yet on the other hand, when all we wanted to do was to spend a little time over Christmas with some of the people whom we loved most in all the world, we were being made to feel like criminals.

Leah didn’t appear to let it bother her and she looked forward with great excitement to the first family get-together on Friday night the 27th December 2013.

We had a routine outpatients appointment in Belfast to attend earlier that day first. Leah became very unwell in the car on the seventy mile journey to the hospital but she tried to get me to promise not to tell anyone that she was sick – so desperate was she to get home for that big family get-together that she had waited so long for.

As each medical professional came and did what they had to do, Leah sat and smiled at them. They never suspected a thing – none of the nurses even noticed what I had noticed – that Leah was breathing at a rate of FORTY respirations per minute – research suggests that an adult with a resting respiratory rate of over 24 breaths/minute is likely to be critically ill.

The last person to visit, after we had been at the hospital for half a day, was our consultant. I drew his attention to Leah’s rapid respirations and he sent us WALKING from the Bridgewater Suite in the City Hospital to the adjoining Cancer Centre for a chest X Ray. Leah was so breathless that I wasn’t sure if she was going to make it. I had to help her dress and undress for the X ray as she couldn’t manage it on her own, she needed all of her energy just to breathe.

When the consultant saw the results of Leah’s chest X ray he was embarrassed that he had sent her walking to the X Ray department in the Cancer Centre and he apologised to us. Admittedly, Leah had tried very hard not to look ill and she had been very successful. Leah was initially admitted to a single room in the Cancer Centre, but within 24hrs she was in ICU and the doctor was telling me that she may not survive.

Leah was so disappointed at not getting to the family party, but she didn’t make a big issue out of it. That is why, at the end of Leah’s life, even though she was unconscious, it was so important to get to the Children’s Hospice so that most of her family and very close friends could be with her.

I wanted to give Leah what she had so desperately wanted – that one last big family get together.

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.