A Sibling’s Grief

A few days ago my youngest child brought home the annual Limavady High School magazine. I took it to bed with me that night to start reading through it. One of the first places I looked was in the creative writing section. Initially, I read an endearing piece written by one of my daughter’s classmates about becoming a ‘big sister’. Then I discovered that my daughter had also written a piece entitled “My Most Memorable Experience”.

As I began to read it I discovered that she had written about her experience of losing her sister. Although I didn’t read anything that I hadn’t already known, it was still very emotional to see her experience of the death of her sister written down in black and white. However, I also felt very proud of her for being able to give her grief a voice and to do so very articulately. She wrote it in the previous school year so she would have been thirteen or at most fourteen when she wrote it.

I have obtained her consent to publish her piece of writing on here, with the aim of increasing awareness of sibling grief. Several adults who lost a sibling when they were growing up, have told me that they felt that the focus was usually on their parents’ grief and that they often felt as if their enormous loss was overlooked.

My Most Memorable Experience

“If you have lost someone very important to you, then you already know how it feels. And if you haven’t, you cannot possibly imagine it” – A Series of Unfortunate Events

On the 19th April 2013, my sister was diagnosed with a rare and life-threatening form of bone marrow failure known as Myelodysplasia. Cancer. She needed a bone marrow transplant urgently. We all had to get our blood tested and thankfully my brother was a match. Leah and my mum had to spend 14 weeks in Bristol Children’s Hospital. That meant for three months I was alone with my dad and brother. My older sister was away at university. I pretty much had no one. My dad just about learnt how to tie my hair up and my brother was always on his computer so I was pretty much alone.

Thankfully after the three months of them being in Bristol and me and my dad occasionally visiting when we could, the transplant was successful in curing her Myelodysplasia. I was ecstatic. I was so happy, finally, life would be normal again. We could move into our new house. It would soon be Christmas and we would become a full family again.

Christmas had passed and everything seemed normal. But it wasn’t……On the 28th December, she became unexpectedly unwell and was then admitted to ICU in Belfast City Hospital. She had only just come home and now she’d been taken away from me again.

Me, my dad and my brother had to drive up to Belfast in the middle of the night Wednesday 15th January 2014. When we got there it was eerily silent. I remember my mum taking us up to Leah’s room. I remember her lying there looking lifeless. She couldn’t move, she couldn’t speak, she couldn’t even open her eyes. She was just lying there. I remember crying for hours. Crying until my head was sore. Crying for hours. But I don’t remember it stopping. The last things I remember from that night were kissing her hair-free head and then sleeping on my aunt’s floor, dreading the morning.

The next day was by far the worst of my life. All my family were gathered in the NI Children’s Hospice. It was silent again. No one was ready. No one was prepared to lose her. They had to use two ambulances to transport her from the hospital to the hospice. They moved her into a room there, all of us were gathered around her whilst her favourite playlist of songs serenaded us in the background. I remember clutching onto her hand, while I sat on my aunt’s knee, mentally begging her to hold on. I finally lost that hope and broke down. The tears were streaming down my face. My aunt had to take me to another room because I was having a panic attack. My head was sore. My chest was tight. I couldn’t breathe.

I remember the hospice staff switching off the life support.

I remember hearing the continuous beeping stop.

I remember the moment she died.

The atmosphere was quiet, so quiet that you could nearly hear all of our hearts shattering at once. I would try and describe the feeling to you but I can’t put in words how horrendous it actually was. I would never wish that feeling upon anyone.

The wake was the next few days. They laid her white coffin open on her bed. She was wearing the dress that she had worn to her formal (which was only a few weeks before she relapsed) and some rainbow, fluffy socks that I picked out. We all put something into her coffin, one of the items being her favourite teddy, Ducky. I’d say there were over a hundred people who visited the house in total. The funeral was on Sunday but the only thing I recall is my uncles and cousins carrying her coffin.

The reality is you will grieve forever. You won’t get over the loss of someone you love. You will learn to live with it. You will heal and rebuild yourself. You will be whole again. But you will never be the same again, nor should you want to be. I know I’ve changed. I know I’ll never be the same again but I can’t tell if it’s for the better or for the worse.

Yes, I am angry. Angry because she was so young. I was so young. Sixteen-year-olds aren’t supposed to die. Ten-year-olds shouldn’t have to feel that pain. But I’ve also become stronger……..Sometimes I look up at the night sky and there’s always one star that catches my eye. It always seems the brightest. And I know she’s there, watching over me.

The Girl’s Brigade Display

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.

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

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.

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

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.

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”

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.

NOT a happy anniversary.

At 4.20pm on Friday 19th April 2013 I received a phone call from a Dr in Belfast City Hospital that we had never met & hitherto didn’t even know existed.

He rang to give us the results of the bone marrow biopsy that Leah had previously had done on the haematology ward of the Royal Belfast Hospital for Sick Children on Monday 25th March 2013.

The information imparted in this phone call ensured that our lives would NEVER be the same again.

The song “Hard Times” by Jamie Owens is a real golden oldie but the words are beautiful and have helped and encouraged me many times during my life –

1. Is the rain falling from the sky keeping you from singing? Is that tear falling from your eye, ‘cause the wind is stinging?
Refrain: Don’t you fret now, child, don’t you worry? The rain’s to help you grow so don’t try to hurry the storm along. The hard times make you strong.
2. Don’t you know, a seed could never grow, if there were no showers? Though the rain might bring a little pain, just think of all the flowers.
Bridge: I know how long a day can seem, when storm clouds hide His face; and if the rain dissolves your dream, just remember His amazing grace!
3. Don’t you know, the sun is always there, even when the rains fall? Don’t you know, the Son will always care, when He hears your voice call?

I never imagined that buying chocolate could be so distressing

On Monday 25th March ’13 Leah had her first bone marrow biopsy in the Royal Belfast Hospital for Sick Children. This subsequently resulted in her diagnosis of myelodysplasia with monosomy 7. Leah was accompanied to the Royal by my husband, his brother in law & his two sisters. I went to my work that day as I said that I would never set foot in the world of paediatric oncology/haematology unless I absolutely had to. I couldn’t bear the thought of seeing children with chemotherapy hair loss and nasogastric tubes.

One year later I’m in Tesco’s buying THREE Easter Eggs instead of the four that I’ve been buying since our youngest child was a toddler. I never imagined that something as simple as buying chocolate could precipitate so much emotion.

A Phone Call Can Change Everything

“My name is Dr ….. and I work in Belfast City Hospital. Has anyone given you the results of Leah’s bone marrow biopsy?”

It was Friday afternoon the 19th April 2013. I had been sitting on my bed, typing up an assignment for a work related course that I was doing, when the phone rang. It was a withheld number and I had hesitated before answering, not wanting to be interrupted by yet another stranger’s voice trying to sell me a product that I neither wanted nor needed.

My heart started beating faster and breathing became more difficult. This was a stranger’s voice alright, and although he wasn’t trying to “sell” me anything, the news that he was delivering, was something that I neither “wanted nor needed”.

He told me that Leah had a type of bone marrow failure called myelodysplasia and that she needed a bone marrow transplant.

I asked him if he was a paediatric haematologist and he said no, that he was an adult haematologist.

So I said “Why are you ringing me then, Leah already has an adult haematologist who we like very much and we don’t want another one.”

He replied that he was also a transplant coordinator. I then said that we had been told that if anything sinister was found in our daughter’s bone marrow biopsy that she would immediately be transferred to the care of the paediatric haematologist at the Children’s Hospital in the Royal who had done the biopsy. Our daughter was only fifteen years old.

This doctor replied that she wasn’t available at the moment ( I found out later that she was on honeymoon but that there was other paediatric haematologists).

He went on to say that he wanted our whole family in his consulting rooms in Belfast on Monday.

I asked “Is my daughter’s medical condition so serious & so urgent that we have to come and see you so soon?” And he replied “Yes – but you can come on Tuesday if you prefer?”

I then asked Leah if she would prefer to miss school on Monday or on Tuesday and she consulted her class timetable and said Tuesday, so Tuesday it was.

The reason Leah’s siblings were required was for “tissue typing” for a potential match for the bone marrow transplant.

Then he said “Miriam is only 9, she might be a bit young.” I told him that Miriam has very good understanding and she would most certainly want to be a part of anything that’s being done to help Leah.

I said “Please don’t make a difference in my children.” So he told me to bring all four of them.

I asked him where we had to go and he said “Well, you know where the Tower Block is at the City Hospital?” I was losing it at this stage and I said rather angrily through my tears “Why would I know where the Tower Block is? When in my entire life have I ever needed to know where your Tower Block is?”

He gave me more directions and the phone call ended.

Leah had been sitting beside me all this time, googling myelodysplasia and bone marrow transplant on her smart phone. That’s how she received her diagnosis.

I have to say, bad and all as that phone call may sound, it was wee buns compared to what we heard when we met the doctor face to face.

Nothing I read on the internet over the weekend was anywhere near as bad as what we were told when we got to that first appointment.

The phone call only told me that my daughter needed a bone marrow transplant and I knew very little about bone marrow transplants.

In that first appointment the doctor was so blunt about the implications of Leah’s diagnosis and consequently all the things that could go wrong before, during and after the transplant that we were left feeling that it was actually a miracle that Leah needed in order to survive! I write about this first appointment here.

It was a huge relief a week or so later when we got the phone call to say that Simon was a 10/10 bone marrow match as the Dr had said that if none of the siblings were a match then Leah would need a donor from the World Wide Registry.

He’d said that this could take up to 4 months and during the wait Leah’s disease could advance rapidly and her chances of survival could be greatly reduced.

A short while after this we also got word that Leah had been accepted by Bristol Children’s Hospital for transplant.

By then I knew that this was also good news as Bristol is a Centre of Excellence for treating rare blood diseases such as Leah’s and having her transplant there would greatly increase her chances of survival.

Gradually hope was being restored.

I have always loved the song “10,000 Reasons” by Matt Redman but it took on a special significance for me around the time of Leah’s diagnosis, especially the verse

“The sun comes up; it’s a new day dawning
It’s time to sing Your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes”

For me the challenge each day was to be still singing when evening came.

In those early weeks and months after Leah was diagnosed I found it almost impossible to pray or read my Bible – I wasn’t angry with God, I have never felt a need to ask “Why?”

I just felt so overwhelmed by all that was happening and so numb with shock that the only way in which I could engage with God was through listening to worship music and singing along.

I haven’t a note in my head and can’t sing in tune to save my life, but I used to get on my own in the house or in the car and put on CDs of worship music and sing to God with all of my heart. This helped me to connect with God and feel His presence with me.

Diagnosis of PCP

Written in the Cancer Centre.

Leah’s chest infection has been confirmed as PCP – a type of pneumonia that only occurs in people who are immunocompromised.

 She’s on continuos oxygen and is on intravenous antibiotics and is back on steroids and is being regularly reviewed by her own Dr and by the ICU Dr in case she needs more intensive support.

If her condition stabilises our Dr hopes to be able to transfer Leah to Altnagelvin, our local hospital, early in the week.

This hospital we are in is approximately 70 miles from home.

Tuesday is Leah’s 16th birthday and the 1st anniversary of when this journey started – it was on her 15th birthday that Leah visited her GP and had a blood test taken which resulted in her being referred to a haematologist.

This led to 3 months of investigations & eventually we received a phone call in April telling us that Leah had paediatric myelodysplasia with monosomy 7 & needed a bone marrow transplant!

Prayer would be much appreciated for Leah’s speedy recovery please.