Guest Blog – Who She Was To Me

Guest Blog – Who She Was To Me

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Jenny and Leah

One of Leah’s close friends has written this beautiful tribute to her, called Who She Was To Me.

The Bristol visit she refers to was in October ’13, but to me it feels like it was only yesterday.

It was Leah’s 14th week away from home and in another country. Much of that time had been spent in isolation. She had been horribly ill, enduring countless side effects from her treatment. She had become very lonely and longed to see her immediate family and close friends.

Children/young people with serious or life threatening illnesses sometimes get visited by well known singers or actors to cheer them up.

Leah wasn’t interested in seeing anybody famous, but she was really cheered up (and so was I) by the two separate visits that we had that week from young people from back home. They were in England for other reasons, but they both took the time and trouble to get to Bristol Children’s Hospital, to enter our world and brighten our day:

Who She Was To Me

She smiled a lot. Like most people, she was most beautiful when she smiled. I remember once describing her as a diamond; the pure white light of Christ shone in and what came out was the refraction of a thousand shades of colour, flowing bold and bright onto everyone around her. And, like a diamond, she shone brightest against the blackness of this world.

I met her when I was sixteen. She was wearing a “To Write Love On Her Arms” band around her wrist and instantly we clicked. Several weeks on it was like an ancient bond, something God himself put into motion.

One time in particular, I remember, after Youth Fellowship at her church her mother came to pick her up but my dad was typically running late. As any fifteen year old girl is aware, mummy wouldn’t be too pleased waiting in the car-park for longer than a few minutes. But she waited. She waited with me until my father pulled up in the red Passat. She hugged me tight and skipped off down the steps. That was the kind of person she was though. She would put others before herself; if you were happy she would rejoice. If you were worried or unhappy or lost she would empathise and intercede in prayer. She was a selfless being.

I didn’t realise is at this point, that one day this young girl would change my life.

“I haven’t been feeling too well for quite a while now. So mummy made an appointment and I have to go for bloods on Tuesday. There was almost worry in her eyes, but not quite- she wasn’t a worrier.

“The bloods were clear but ‘cause I’m still not better I have to go to Belfast for more tests. And one of those scans.”

“They didn’t find anything again. They want me back for an MRI next.” Before I left her this time, I made her a little card. A pathetic folded piece of pink paper with a flower on the front and a little word of encouragement on the inside. Petty as it was, she looked at it as though it was made of gold because she knew it was made of love.

It’s vivid, this part. When I dwell on it, it plays like a GIF on my mind. My phone rings as I exit Ebrington Square with my mum.

“It’s Leah,” he almost hesitates, “She has cancer. Her sister just told me, bone marrow cancer.”

I climbed into the backseat of the Passat with confusion stinging my eyes and explained to my parents what the subject of the call had been.

Facebook and texts kept us in contact. She and her mother created a Facebook page on which we were regularly updated. She told me she had to go to Bristol for treatment. I vowed I would visit her there. My cousin lives 20 minutes from where she’d be and I’d go to see her when I was over next. I promised. I kept that promise, even if it took a while.

I saw her once before this in Altnagelvin. She fell significantly ill right as her GCSE modules were approaching. Something called febrile neutropenia. She could have died if she hadn’t been treated right away. Rather than accept defeat and miss her GCSE modules, she sat in isolation and took her exams. That’s the kind of person she was; she battled when it seemed the fight was against her. She gained As and A*s in every one of them. I went to her on the evening of the Maths exams to give her mother a short rest. I gave her the small shell decorated bracelet I bought on holidays, and tying it around her wrist she gave me that same look she gave me when I gave her the petty card, as though I had given her gold. I remember the apple juice cartons on the bedside table; the way the old leather visitors chair creaked and my yelp as the scalding tap water touched my fingers and her voice filtered through the bathroom warning me a little too late that the water was boiling hot. I remember how we talked about the difficult things in our past that were so similar, and the way she couldn’t remember the name of that song and I began to tear up as something in me knew exactly which song it was and as I started to sing, she welled up too because she knew there was no way we were an accident.

In October, almost 5 months after I last saw her, I made it into Bristol. I waited outside for a few minutes before I turned to her husky voice calling me and her mother just behind her. I hugged her so tight! Not too tight, though. I knew she was still tender and I was afraid to hurt her. Her mot showed me up to the room which was home for the entire time she spent away from her old, normal life. I saw the giant Gromit statues painted all around the hospital, the ones from her photos and I smiled.

Through my time there, I was introduced to Leah’s new way of life, a life she was soon to leave behind. I met her nurses, doctors and tasted the tray-bakes they loved to share- fifteens, without the cherries. She asked to me tweeze her eyebrows. She joked at how although her hair was missing, her eyebrows didn’t co- operate, and if I made a mess of them, we could blame the chemo. That’s the kind of person she way. She wasn’t afraid to laugh amidst the adversity; to see the joy in life. I painted her nails. She liked to have her nails painted to mask the discolouration from treatment. I stayed a few hours, just to be with her. To see rest in the face of the girl who saw life as beauty everywhere. To see her smile in my company made me feel amongst royalty.

We never finished that last conversation. I never prayed with her that last time as was the only desire in my heart. We didn’t take a final selfie together. As the cannula in her arm spilled a pint of blood right before she got up for a scan, my empty stomach rushed me to the toilet as she was escorted to a familiar area of the hospital, which was of course in another building. The nurses refused to let me follow her until it was certain I wasn’t going to faint. An unfamiliar labyrinth of corridors met me and 20 minutes later my lift out of Bristol arrived. I stood outside contemplating running back inside only to be greeted with a beep of the horn and a text simultaneously- from Leah: “Where did you go? I’m back in my room now. Can you come back??” But I couldn’t. And that’s the way it went.

She came home again, to a new house. But home is where we belong and she belonged with her mother and father, her brother and sisters. Her friends and boyfriend.

On Boxing Day, Leah took difficulties breathing. They realised it was a difficult infection in her lungs, complications after treatment. She spent her sixteenth birthday in isolation on a ventilator and posted a selfie with her mummy. That’s who she was. She loved through everything that was against her.

On January 16th, sixteen days after her birthday I received a text from her mother reading “At…pm today, Leah went to be with her Lord…” and I collapsed. I wasn’t as strong as she had been all that time. She went home then. Real home; home to her Father. The One who taught her perseverance, to battle, to love unconditionally as she was loved unconditionally. Taught her to find joy amongst the pain. And she taught me. That’s who Leah was.

Grieving For A Sister

Grieving For A Sister

CHRISTMAS 2012 Leah and Miriam in their new onesies.
December 2012 Leah and Miriam in their new onesies.

Last night Miriam was upset about a school playground incident. I listened to her and hugged her as she cried.

Then I went to my room and I cried too – upset that my little girl has been left like an only child, with only her mum and dad to turn to much of the time.

From Leah's Facebook page
From Leah’s Facebook page. The caption underneath reads “I do love my little sister.”

Up until September 2012 Miriam had two older sisters living at home. The three girls had each other to discuss their woes with. Oftentimes I heard things second hand rather than first hand.

Leah was the primary dispenser of hugs. From a young age, Leah’s emotional barometer was very sensitive, she usually knew if anyone was upset and she offered them comfort. Even while still of Primary School age, Leah could sense if I had a difficult day at work and she would offer me a hug.

I remember one day when Leah was very young, maybe 6 or 7 years old, I was very grumpy and got very annoyed with her regarding some childhood misdemeanour. She fled to her room in tears. When I had calmed down, I went to her room to speak to her and she looked at me with her big brown eyes, like a wounded puppy, and exclaimed “Mummy, you’ve hurt my feelings.” I didn’t know what to say.

I remember another time when Leah was 5 years old and I was very worried about a family situation, but trying not to show it. I remained calm on the outside (or so I thought) and I was very careful about what I said in front of the children. Leah’s big brown eyes looked up at me as she asked “Mummy, is this the worst day of your life?” I was speechless.

I know what it feels like not to have sisters living at home to share secrets with. By the time I was Miriam’s age, all four of my siblings had left home. I hated feeling like an only child, with only my parents for company, kind and caring though they were.

Similar to Miriam, I was a ‘wee late one‘, except that it was Cork City not Northern Ireland, so Mum used to tell people that I was “an afterthought – her baby“.

At home she called me “a chuisle, mo chroí” which is Gaelic for “the pulse of my heart“, or else she called me “Vicky, a leanbh” which is pronounced “Vicky Alanna” and means “Vicky, my child” – a term of endearment.

This is how Leah came to be named Leah Alanna.

As Miriam sobbed her heart out last night, it occurred to me that her tears were probably not only regarding the incident in question – the usual stuff of pre-teen girls – but her tears were also expressing the loss of a sister who had always been a source of comfort.

Miriam and Leah were very close. Miriam accompanied us to Bristol for Leah’s first Outpatient’s Appointment.

Miriam accompanied Leah and I again when we flew over for Leah to be admitted for her Bone Marrow Transplant.

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Aldergrove Airport 21st July 2013

Miriam came right to the door of the Transplant Unit, beyond which no children are allowed, unless they are patients. The Transplant Unit swallowed Leah and I up, whilst Hospital staff cared for Miriam until our childcare arrangements kicked into place.

Once Leah was back out of the Transplant Unit, five weeks later, Miriam was over twice to visit us with her Daddy. Leah loved when family came to visit.

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Bristol 28th AUGUST 2013

During the 6.5 weeks that Leah had at home before her final hospital admission, if Miriam wasn’t at school, she barely let Leah out of her sight. She used to get off the school bus, get changed and go straight down to Leah’s bedroom. There she stayed until bedtime.

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Leah ready to attend Nic’s formal on the 21st November ’13

On one occasion, for a very special treat, she was allowed to sleepover in Leah’s bedroom with her.

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This was the last ever photo taken of Leah and Miriam together – 20th December 2013

When Leah was critically ill in ICU, she was desperate for Miriam to be allowed in to visit her, but the rules of ICU were “No Children Allowed“.

I tried to explain this to Leah, who was on a ventilator and communicated by typing on her iPad, but she insisted that I could just bring Miriam on in without permission, because she didn’t look like a young child. This was Leah’s reply to me on the matter:

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I asked the staff about bringing Miriam in to visit Leah, but they were concerned that it would be distressing for Miriam to see her sister so ill and said that she needed to be helped to prepare for this. A Family Worker from the local Hospice was sent out to our house to start this work.

Of course, while all of this was happening, Leah’s condition was gradually deteriorating and both time and opportunity were lost.

Eventually, at 1am on Thursday morning the 16th January 2014, Horace drove to Belfast City Hospital with Miriam and Simon. I sat in the car and explained things to them. Then the two of them accompanied me into the ICU to say their goodbyes to their much loved sister, who was now deeply unconscious and hooked up to countless machines.

It was one of the saddest moments of my life.

One of the many challenges for a bereaved parent, is trying to support our grieving children, when oftentimes we feel barely able to support ourselves.

The only hand that we can play is with the cards that we’ve been dealt.

The only hand that we can play is with the cards that we’ve been dealt.

I woke at 6.30am this morning with a migraine – nothing unusual there. I took my usual prescription medication and lay back in bed to wait for it to work.

However, instead of getting relief, I became sicker and sicker.

This was the day that we were getting solar panels installed, so the men were here doing that, as well as a joiner and an electrician. There was a lot of drilling. My husband attended to them.

I stumbled to the bathroom and found a receptacle to bring back to the bedroom into which I could vomit.

By midday I still couldn’t even sit up in bed without triggering an episode of vomiting bile. I was starting to feel very desperate.

Then I remembered the stash of medication still in Leah’s bedroom. I tried to remember if we still had any of the powerful anti sickness drugs she used to take when she was having chemotherapy.

Then I realised that even if we had, I wouldn’t be able to swallow them, as I was too sick.

Then I remembered the hyoscine patches – Leah used these in conjunction with several other anti sickness drugs to combat the severe side effects of intensive chemotherapy.

My eldest daughter was dispatched to search Leah’s medicine drawer and thankfully she soon returned with the patches.

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I stuck one behind my ear and lay motionless for another hour. By 1.30pm I was able to take oral pain relief that took the edge off the pain and enabled me to sit up in bed at last.

Since Leah’s anniversary I have been concentrating on my positive memories of Leah. I’ve been trying to train my mind to remember the good times.

This morning has temporarily taken care of that.

Memories have flooded back of  our beloved child who was so ill from the side effects of her treatment, that she was simultaneously on four anti sickness drugs – ondansetron, nozinan, metclopromide and hyoscine patches.

Still she vomited.

She even vomited up her nasogastric tube.

It was horrible.

It was a great relief in September ’13 when Leah’s gut healed and she was able to eat normally again.

Our relief was short lived though, as Leah developed a succession of side-effects from her treatment, each one a disappointment and each one greatly interfering with her quality of life.

On the 27th December ’13, as we travelled to a routine appointment at Belfast City Hospital, Leah vomited profusely in the car. That was the first clear sign that something was seriously wrong.

It was in fact, the beginning of the end.

Leah kept insisting that day that she wasn’t sick, that she had vomited because of drinking some water too fast.

I think Leah denied feeling sick for two reasons  (her CT scan later that day showed that she was seriously ill):

A) Leah no longer knew what it felt like to be well.
B) She was desperate to go to the family party that was arranged for that night – her first since her transplant.

Leah continued to vomit frequently until she went on the ventilator on Thursday 2nd January. Then she was tube fed again and her gut seemed to settle down.

Life is rough sometimes.

However the only hand that we can play, is with the cards that we’ve been dealt.

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Many times life doesn’t make sense and we don’t understand why things happen the way they do.

As a Christian I believe that somehow or other, the cards that I’ve been dealt were chosen for me by a loving God.

There are days that it doesn’t FEEL like it, but I believe that God has, does and will give me the strength to face every situation.

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I believe that this world is not all there is.

Jim Reeves expresses it well in his song

“This World is Not my Home”

This world is not my home
I’m just a-passing through
My treasures are laid up
Somewhere beyond the blue.

The angels beckon me
From heaven’s open door
And I can’t feel at home
In this world anymore.

Oh Lord, you know
I have no friend like you
If heaven’s not my home
Then Lord what will I do.

 

Peace Restored

Peace Restored

In the early hours of Thursday morning the 16th January 2014, I left Leah’s room in ICU and walked back through the winding hospital corridors, to my room in the Cancer Centre, for one last time.

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I knew exactly what lay ahead for us as a family that day.

My entire body felt like lead. Walking along those corridors felt like trying to propel my limbs through deep water.

Leah had been on a ventilator for two weeks and she had been unconscious for the past four days.

I was already missing her terribly. When she was awake on the ventilator, she had found creative ways to communicate.

All of the tests had confirmed that Leah’s body was now “broken beyond repair”.

Leah’s CT scan images had been scrutinised by the top experts in both Belfast City Hospital and Bristol Children’s Hospital.

Two of the consultants in Belfast had sat surfing the internet until midnight, searching for any potential remedy that hadn’t already been tried.

Hundreds of churches and thousands of people, all over the world, had been praying.

Nevertheless, it was now abundantly clear, that Leah’s story was only going to have one ending.

At 8.30am that morning, an emergency ambulance was booked to transfer Leah and myself, along with three ICU staff, to the N.I. Children’s Hospice, where all of our loved ones would be waiting.

There Leah’s life support would be withdrawn and we would say our final goodbyes.

I packed my bags and sat on my bed.

I felt numb, empty, desolate.

I lifted my iPad and clicked on Facebook.

There I discovered that Leah’s friend Matthew had put together a beautiful YouTube video, of various photos of  Leah taken over the past year, interspersed with inspirational messages and backed with the song “It is well” by Hillsong.

I could scarcely breathe as I watched and listened:

“But Lord it’s for Thee
For Thy coming we wait
The sky not the grave is our goal
Oh trump of the angel!
Oh voice of the Lord!
Blessed hope
Blessed rest of my soul!

It is well with my soul
It is well
It is well with my soul

You are the Rock
On which I stand
By Your grace it is well
My hope is sure
In Christ my savior
It is well with my soul”

A peace flooded through me.

I knew without a shadow of a doubt, that it was well with my daughter’s soul.

I slept for a few hours then.

In the morning I left that room for the last time.

Normally the staff on that ward in the Cancer Centre were friendly and welcoming to me, but they must have been very busy, for as I slipped in and out that morning, nobody spoke to me or seemed to notice me.

I felt alone and invisible.

At 7.20am as I stepped into an empty lift to head down to ICU, feeling very alone and vulnerable, I heard a text coming in on my phone.

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It was a work colleague from a previous job – her act of kindness in texting me at that exact moment was precisely what I needed.

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The remainder of that day is described in my blog post How Could We Ever Have Let Her Die In An Unplanned Kind Of A Way

This is the YouTube video that I watched that night:

 

Leah’s birthday in ICU

Leah’s birthday in ICU

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This was Leah with her Dad on her 16th birthday on the 31st December 2013.

There was no party, no cake, we didn’t even sing “Happy Birthday”.

Leah was exhausted from the effort of trying to breathe. She struggled to even keep her eyes open.

I kissed her and told her how precious she was and how much we all loved her. I said that we’d have a big party when she got home.

This is what I wrote on our Facebook blog @ 8am that morning:

“Leah’s oxygen levels & breathing remained stable over night. They are alternating 1hr of the face mask CPAP with 3hrs using the nasal prongs. Leah prefers the nasal prongs. We both got a few hours sleep. Thanks for all your prayers & supportive messages. Visiting is of course restricted in ICU & many of you live far away but modern technology brings your loving support directly into Leah’s room.”

Lots of people sent birthday wishes by text, facebook, card or email. All of these were read out to Leah.

On Thursday 2nd January ’14 Leah went on a ventilator. By Friday this had helped her body so much that she was awake and keen to communicate.

Photography was strictly forbidden in ICU but like many young (and not so young) people, Leah loved taking selfies.

On the morning of the 3rd January, when Leah was using her iPad, she pulled my head down beside hers and ‘click’ – there it was, we’d broken one of the rules of ICU.

It was usually quite difficult for Leah to type, as the medication that she was on blurred her vision.

Not on this occasion – Leah uploaded the photo to Facebook and typed out:
Didn’t exactly plan my sweet 16 birthday or the New Year to be like this but thanks to everyone whose been praying. I love you mummy ❤ 🙂

Such precious beautiful words.

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Chilli Noodles

Chilli Noodles

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Today, for the first time since Leah died, I cooked one of my favourite dishes – chilli noodles. I’ve cooked for others many times since Leah died but NEVER specifically for myself.

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The day that Leah went on the ventilator was the day that food ceased to hold any pleasure for me and became merely a means of survival.

At times since then I have struggled to even swallow. Bowls of cereal, or bread and cheese, became my staple diet for many months.

I knew from what the ICU doctors told me, and from my own research, that once Leah became ill enough to require ventilation, that only divine intervention would guarantee her survival.

The consultant looking after Leah that day upset me further by the tactless manner in which he spoke to me. One of the nurses told me at the time that he’s usually very nice, but that he had been very uptight because he was worried that Leah was going to die – was that supposed to make me feel better?

Lung complications post transplant can be very difficult to treat, over a six day period Leah’s lungs had not responded to any of the treatments that had been tried – her condition just kept getting worse and we just kept praying and holding onto hope. I wrote about the day that Leah went on the ventilator here.

I noticed that once I returned to work in September I found eating a little easier – a bit of distraction probably and having another focus. Around October time I eventually stopped losing weight.

Yesterday in Cosmo which is a buffet style “eat all you want” kind of place, I noticed as I sampled the various Chinese and Indian foods, that my taste buds seemed to “wake up”. I started to recall what it felt like to actually enjoy eating.

On the way home from Belfast I pondered the fact that it was now almost 12 months since I had cooked the very spicy, chilli vegetable dishes that I once loved. Thankfully I still have chilli’s in the freezer, leftover from the time before Leah died, when I consumed an average of a chilli per day.

It must be reassuring for my kids to see me doing some of the things that were once “normal” for me. My eldest and my youngest have inherited some of my food preferences so they each tucked into a bowl of spicy noodles today too.

Strange the many and different ways in which trauma and grief can affect us.

Today one of Leah’s friends sent me a link to a beautiful song called ‘I Believe’ by Chris August. I had never heard it before and the words are lovely.

R.I.P. Caiden Tang

R.I.P. Caiden Tang

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In the mid eighties I worked as a nurse in England. Part of that time was spent doing agency work and I worked in several different hospitals.

Everywhere I worked I met Irish nurses, so I could be forgiven for assuming that all English hospitals have a fair complement of Irish nurses.

What a disappointment when Leah and I got to Bristol Children’s Hospital and discovered NO Irish nurses. I asked a nurse on the Transplant Unit where all the Irish nurses were and he told me that he had worked in the hospital for 15 years and had met only one Irish nurse in all that time. I was gutted.

Leah and I were so far from home and family. I longed to hear a familiar accent and meet someone who understood our culture. Then I discovered that there was another child from N. Ireland on the unit – Caiden Tang. His mum Kathy and I instantly became friends – partners in crime more like!

Kathy and I were each in lockdown in isolation cubicles with our very sick children so we relied on snatched moments at the linen cupboard or in the changing rooms to have a quick conversation – and even a giggle. We both knew that a sense of humour was essential in helping us retain our sanity.

Caiden was five years old and was very unwell after his transplant. He was so weak that he had to learn to walk again. When I was entering or leaving the BMT Unit I used to wave into Caiden. His bed was full of teddy bears, his cubicle walls adorned with his absolutely favourite band – One Direction.

Caiden was first diagnosed at the age of five months so Kathy had been on this road way longer than me. Kathy’s tenacity, courage and dogged determination to make sure that her child always got the best possible medical and nursing care inspired me greatly. Her sense of humour through it all was like a tonic.

Occasionally, if Leah’s boyfriend Nic was visiting her and Caiden’s dad Raymond was with him, Kathy and I got an entire evening together – now that was a treat! We spoke the same language – Norn Irish English and we had a similar sense of humour – a little bit crazy!

Children weren’t allowed in to visit on the Transplant Unit but Caiden had been stuck in a tiny isolation room for months and was desperately missing his older sister Ellie. Ellie was also desperate to see Caiden.

Kathy understood the importance of Caiden’s emotional wellbeing and the impact this could have on his recovery. So one quiet Sunday in August, Ellie was surreptitiously smuggled into Caiden’s room and the joy on their faces was very evident in the photographs.

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Kathy and Caiden left Bristol the week before us. They had to fly back to Belfast by air ambulance as Caiden was still very unwell.

Back home Kathy and I kept in regular contact but were unable to meet up at that stage due to caring for our children and the fact that we don’t live near each other.

When Leah was critically ill in ICU in Belfast City Hospital Kathy sent me heartfelt text messages of support – the kind that only another “oncology mum” can write.

Kathy also posted a beautifully worded prayer request for Leah on Caiden’s Facebook page. This post received over 1,000 ‘likes’ and it encouraged my heart so much to know that so many people were praying for us and wishing us well.

I was so pleased in May 2014 when Caiden started to look so much better and was even managing to attend school. His progress was amazing.

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Then in September came the news that I didn’t want to hear – Caiden had developed pneumonitis. This was the post transplant lung complication that had taken my daughter’s life. I definitely didn’t want Kathy to experience the pain of grief and loss that I live with on a daily basis.

Caiden had been diagnosed with lymphoma at 5 months old. He had come through so much. He was such a wee fighter and constantly amazed the doctors with his ability to recover against the odds – surely this couldn’t be the end?

Just because pneumonitis took Leah’s life didn’t mean it had to take Caiden’s too – every child’s medical situation is different. I prayed for Caiden to be healed, as did so many others. As the scene in ICU in the Royal unfolded, I cried many tears for Kathy and her family.

Along with Kathy I clung to each tiny bit of hope, while at the same time realising with great sadness that her journey bore so many similarities to the 2.5 weeks that I had spent in ICU with my own daughter. I prayed for healing for Caiden, for strength and wisdom for Kathy and the family circle.

Then this morning, on my youngest daughter’s 11th birthday, came the news that shattered my already broken heart.

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