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:

MuffGlenMontage

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:

StreamsintheDesert

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.

 

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.

 

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.

The Girl’s Brigade Display

The Girl’s Brigade Display

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Anyone who knows Leah, knows that Girl’s Brigade was an important part of her life. This means that for me, all Girl’s Brigade events are tinged with sadness.

Earlier this week I took part in the annual display of Ballykelly Girl’s Brigade, where I help with the Explorer’s Section.

Then tonight I represented Ballykelly GB by attending the annual display of 2nd Limavady Girl’s Brigade. It was a very enjoyable evening – a lot of hard work goes into these annual displays. Some parts made me laugh – I especially liked their pink panther sketch. Some parts left me in tears, but that of course was completely unintentional on their part.

At the end of April I plan to attend the Girl’s Brigade display, of the Kilfennan 320th Girl’s Brigade Company, which our youngest daughter attends. This is the GB Company that Leah belonged to, from she was three years old.

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Leah participated in their display every year, including in April 2013, six days after she had received her diagnosis of myelodysplasia with monosomy 7.

My favourite memory of Leah taking part in the annual GB display, is the part at the end which is called “the finale”. This is where the older girls usually sing a medley of modern praise and worship songs.

Leah always sang with a smile on her face and sang earnestly, like she meant every word. That image is indelibly imprinted on my mind and always resurfaces when I hear certain songs.

This year at the Kilfennan display, Leah’s peers will receive their “Queen’s Award”.

In the Spring of 2013 Leah filled in the paperwork to commence working towards her Queen’s Award. On the 10th April 2013, a group of girls from Kilfennan GB (including Leah) travelled to Ballymena for an Induction Evening to learn more about working for their Queen’s Award.

On the 29th May 2013 Leah sent the following email to the administrator at Girl’s Brigade Headquarters N.I.:

Unfortunately due to being diagnosed with cancer I have to defer Queens Award for a year. However I hope to pick up again next year when all my treatment is complete and I’ve recovered, thank you for giving me the opportunity to be a part of Queens Award 🙂

Leah composed the email herself and I remember thinking at the time that the person receiving it would probably be quite shocked. I didn’t voice my thoughts however, I just told Leah that it was nicely worded.

Now however, I can’t even read it without crying. Leah’s wording seems so simple, yet so profound.

So matter of fact, with no trace of self pity.

Leah takes nothing for granted, just says that she HOPES to be well enough to resume working towards her Queen’s Award in the future.

As always with Leah, she expresses her thanks and appreciation.

As Leah’s friend states in her guest blog That’s who Leah was.

Who You’d Be Today

Who You’d Be Today

I came across this song on a Facebook site for parents bereaved through cancer:

“Who you’d be today”

by Kenny Chesney

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
I feel you everywhere I go.
I see your smile, I see your face,
I hear you laughin’ in the rain.
I still can’t believe you’re gone.

It ain’t fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell that I’ve been through,
Just knowin’ no-one could take your place.
An’ sometimes I wonder,
Who’d you be today?

Would you see the world? Would you chase your dreams?
Settle down with a family,
I wonder what would you name your babies?
Some days the sky’s so blue,
I feel like I can talk to you,
An’ I know it might sound crazy.

It ain’t fair: you died too young,
Like the story that had just begun,
But death tore the pages all away.
God knows how I miss you,
All the hell that I’ve been through,
Just knowin’ no-one could take your place.
An’ sometimes I wonder,
Who you’d be today?

Sunny days seem to hurt the most.
I wear the pain like a heavy coat.
The only thing that gives me hope,
Is I know I’ll see you again some day.

I think it was the line “I wonder what would you name your babies?” that really got to me.

Leah loved babies and children so much.

Despite having just been diagnosed with myelodysplasia and monosomy 7 and being in the middle of her GCSE modular exams, Leah became the first female in N.I. to have her eggs harvested (egg cryopreservation) on the NHS, in a process similar to IVF.

Our gynaecologist told me she was at a conference in England last year and none of the other gynaecologists there knew of someone as young as 15 having their eggs harvested on the NHS in the UK.

We are however aware of a young girl in America with a similar diagnosis to Leah having her eggs harvested at 14.

Our consultant in Bristol was very impressed at how promptly Leah was attended to by the Regional Fertility Clinic here in N. Ireland.

Leah received her diagnosis on Friday 19th April and had her first appointment at the Regional Fertility Clinic in Belfast on Monday 13th May ’13.

I’m not sure how Leah felt about this appointment but I found it hugely traumatic.

The next day she sat her GCSE biology modular exam in which she got an A*.

I got the impression that in England the long waiting times for an appointment would make it difficult if not impossible for many girls/women to have their eggs harvested, as delaying their chemotherapy would be too risky.

Leah’s eggs have now been destroyed as per UK law.

I write more about Leah’s egg harvesting experience here: The Loss of Innocence

Leah with her cousin's child Timothy - she absolutely adored him ❤️
Leah with her cousin’s child Timothy – she absolutely adored him.
Our God in Whom we Trust

Our God in Whom we Trust

It was on the last Thursday of June 2013 that Dr C phoned from Bristol to tell us the results of Leah’s gene sequencing. They had just discovered that her myelodysplasia and monosomy 7 had been caused by a GATA2 genetic mutation. This was not good news for several reasons. I have discussed this in detail in my blog post Gata2 Genetic Mutation
This genetic defect worsened her prognosis. The bone marrow transplant could eradicate Leah’s myelodysplasia, but no medical treatment could ‘fix’ the defect in her DNA. The long term implications of this weren’t entirely clear though as GATA2 mutations are a fairly recent discovery and research is ongoing.
The following day our lovely Belfast consultant phoned me. In his gentle Armagh accent he asked me how we were coping with this latest turn of events – I told him two things. I said that firstly we had the utmost confidence in the skill and dedication of both himself and our Bristol consultant and therefore we knew that Leah was in good hands. Secondly I told him that our God in whom we trusted would give us the strength to deal with whatever lay before us.
Prophetic words indeed………

We must have done something right – she was always smiling!

We must have done something right – she was always smiling!

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Thank you to everyone who prayed for Horace & I and sent us encouraging messages for our first return visit on Tuesday past to Belfast City Hospital.

We arrived just after 8am & left again around 1.30pm. We were well supported by our TYA (teenage & young adult) cancer nurse specialist & by Horace’s sister Evelyn.

We initially spent quite a while with our Bristol haematologist & our Belfast haematologist. Then Horace & Evelyn went off for a walk in the sunshine while I went “walkabout” in the hospital with our TYA nurse.

She and I visited the Bridgewater Outpatients Suite & ICU & some other places. I was able to show my appreciation to some of the many staff who had been very kind to us.

When I was thanking the nurses in ICU one of them remarked “We must have done something right, for she was always smiling!” It was true – as Leah lay in ICU on a ventilator, she smiled and laughed and hugged people she cared about and told us that she loved us. If she caught me looking sad she pulled up the corners of my mouth into a smile with her fingers. She radiated joy and peace. She knew that death was a possibility and she was ready to meet God.

I had some very positive conversations on Tuesday with various members of staff who were involved in caring for Leah. Although difficult and painful for me, it was also very healing.

An extra bonus before leaving the hospital was a meeting for coffee with a mum from Ballymena whose child had a bone marrow transplant in Bristol around the same time as Leah. Her child is slowly recovering. My friend and I had a great chat, we had so much catching up to do.

Horace & I then met with our eldest daughter Rachel for lunch in the nearby “Mad Hatter” cafe that we used to go to when Leah was with us. Some of the staff recognised us and sympathised with us on our loss.
I really felt upheld in prayer throughout it all and I felt a deep sense of peace in my heart – thank you all so much.

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The main purpose of the meeting with Leah’s Bristol haematologist & her Belfast haematologist was to discuss the findings of the mini post mortem that had been done on Leah’s lungs.

After Leah died a biopsy was done on Leah’s lungs and a tissue sample taken. I wasn’t overly hopeful that there would be any major revelations from this. I was just hoping that there would be no “nasty surprises” i.e. I was hoping that the pm would NOT tell us that Leah had in fact died from an illness that could have been prevented or treated, if it had been diagnosed in time.

From that point of view it was “good news” – they tested the tissue sample from her lungs for everything they could think of testing for and EVERYTHING came back negative, so Leah’s cause of death remains “idiopathic pneumonia syndrome”.

Wikipedia describes this as follows – “Idiopathic pneumonia syndrome is a set of pneumonia-like symptoms (such as fever, chills, coughing, and breathing problems) that occur with no sign of infection in the lung. Idiopathic pneumonia syndrome is a serious condition that can occur after a stem cell transplant.”

The doctors on Tuesday gave us all the time we needed – we discussed lots of different aspects of Leah’s illness and we talked about our memories of Leah herself too.

"I only have eyes for you"
“I only have eyes for you”

Leah had a GATA2 gene mutation – this type of genetic defect is rare and was only first discovered late in 2011. Leah was the first person in the UK to be identified with her particular variant of it. Leah’s bone marrow transplant cured her myelodysplasia and monosomy 7 but could not eradicate the underlying genetic defect and Leah understood this.

After her transplant Leah asked Dr C what other ways this genetic mutation could affect her body but he explained that as research into GATA2 genetic defects was all so new that this information did not exist as yet but as it became available from other parts of the world then he would pass it on to us.

I have now asked Dr C that as future discoveries enable them to retrospectively make sense of the jigsaw pieces of Leah’s various symptoms and complications that he will come back to me and tell me, as my brain likes to make sense of these things. In particular, the spontaneous spinal fracture that Leah experienced after only 3 months on steroids is not fully explained. Her steroid therapy had actually been discontinued the month before her spinal fracture was even diagnosed.

Nevertheless Leah has now received the ultimate healing and is rejoicing forevermore with her Saviour in heaven. I like to listen to these words by Matt Redman and imagine what it’s like for Leah to no longer have a broken body –

“Endless Hallelujah”

“When I stand before Your throne
Dressed in glory not my own
What a joy I’ll sing of on that day
No more tears or broken dreams
Forgotten is the minor key
Everything as it was meant to be

And we will worship, worship
Forever in Your presence we will sing
We will worship, worship You
An endless hallelujah to the King”

Psalm 116:15-17 Living Bible (TLB)
His loved ones are very precious to Him, and he does not lightly let them die.”

On Thursday 22nd May ’14 some special people have arranged to take me to see/hear Matt Redman playing live in Belfast – I’m so excited but I know it could be emotional too.