The Boyfriend

The Boyfriend

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At the beginning of 2013 Leah was having weekly blood tests. The haematologist in our local hospital had booked her in for a bone marrow biopsy, but I received a phone call the day before it was due to take place to say that it had been cancelled (postponed) by the regional paediatric haematologist in The Royal, as she believed that Leah’s weekly blood results weren’t consistent with any nasty bone marrow disorders.

The abnormalities of Leah’s red blood cells had been diagnosed as hereditary elliptocytosis and now they just needed to come up with an explanation for her severe neutropenia and steadily decreasing platelet count. They were veering towards the cause being some type of autoimmune disorder.

On the phone to my sister I told her that I didn’t agree with the diagnosis – I didn’t believe that Leah could possibly have developed two concurrent but distinctly separate haematological abnormalities.

This seemed to me to be way too far fetched to be believable. Personally I was convinced that Leah had some rare form of bone marrow failure and this was what was causing all the haematological irregularities.

My sister wanted me to tell the consultant what I thought, but no way was that ever going to happen. I am a junior nurse and junior nurses should be seen and not heard.

Somewhere during Leah’s subsequent 18+ inpatient weeks and multitudinous outpatient appointments, I learned to speak up – I can’t imagine ever being so bird-mouthed again.

Another thing that I recall saying to my sister early in 2013, was that I wished that Leah didn’t have a boyfriend, because if everything was to go pear shaped, then I didn’t want Nic and his family to have to suffer the pain of loss that I feared that we could end up facing.

This is where I got it all wrong, where I couldn’t see the bigger picture.

This weekend is the big L.O.S.T. (Limavady Outreach and Service Team) weekend. This used to be a major event in Leah’s calendar.

The theme this year is “Pointless”.

In this promotional sound bite, Leah’s boyfriend Nic asks “Are the dark times in life meant to show us that God’s our guiding light, or are they just pointless?”

Tonight I attended the L.O.S.T. event along with our two younger children, and a couple of hundred young people.

During the event Nic spoke for 10 minutes and explained how He became a Christian, how he met Leah at L.O.S.T. in 2012 and how God has helped him through Leah’s illness and death.

Early in 2013 he had applied to go on an Exodus Outreach Team that Summer. Something went wrong and his application never went through. He was very disappointed about this as he really wanted to serve God and he thought that this was how he could do this.

The very week that Nic would have been away on the Exodus Team turned out to be one of the weeks that he spent with us in Bristol, when Leah was very ill in the transplant unit. Nic said he knew that he was exactly where he was meant to be.

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I will never forget how awful those weeks spent in isolation were and how much it meant to have Nic and his Mum travel over from Ireland to be with us.

Nic’s Mum wasn’t allowed in to visit Leah due to the strict rules of isolation, but she was company for me when I left Leah in Nic’s care.

How could Leah have coped as well as she did, for those incredibly difficult nine months from diagnosis to death, if she hadn’t Nic by her side, a pillar of strength?

Leah’s response to her diagnosis was to simply say “God has a plan for my life” and “We have to see the bigger picture.”

What a blessing it was tonight to hear Nic speak, in that hall full of young people and hear him tell them that everything that happened was part of God’s plan for his life too and that God had helped him and given him the strength that he needed.

As Nic spoke, the word that floated around in my head was “blessed” –  Leah’s illness wasn’t a blessing and her death certainly wasn’t a blessing, but how blessed was our daughter to have known the love of this fine young man in her short life.

After Nic had finished speaking we rose to our feet to sing a hymn of praise – In Christ Alone – by coincidence it was one of the hymns that we sang at Leah’s Funeral. We also sang it at Pip ‘n Jay Church In Bristol at the last ever Sunday Service that Leah was able to attend.

During the singing of this hymn Nic quietly made his way to where I was standing, to give me a hug and check if I was ok – why is life such a crazy mix of joy and sorrow?

In Christ alone my hope is found,

He is my light, my strength, my song;

This Cornerstone, this solid Ground,

Firm through the fiercest drought and storm.

What heights of love, what depths of peace,

When fears are stilled, when strivings cease!

My Comforter, my All in All,

Here in the love of Christ I stand.

Miriam’s Cat Mittens

Miriam’s Cat Mittens

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Miriam, Leah and Pepper 9th December 2012

Christmas 2012 turned out to be quite sad, but not because of Leah – her first blood test was a week later on her 15th birthday.

On Christmas Eve, Miriam (then aged nine) was playing with her much loved hamster Pepper, when one of our house cats leapt across the kitchen and sank his teeth into this tiny bundle of fur. I can still hear Miriam’s anguished cry.

The cat ran off and poor Pepper was gathered up, shivering in fear. We hoped and prayed that this adored pet would survive.

By Christmas morning Pepper was a sorry sight. Here’s Leah and my husband trying to revive it – sadly it died before breakfast.

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To further compound this tragedy, while we were all in the same room that morning, the aforementioned house cat managed to get the now deceased Pepper out of it’s cage and eat it, without any of us noticing. This meant that the hamster was denied a decent burial, as befits a much loved children’s pet.

There was no consoling Miriam. Christmas Day 2012 became a rather sad event.

Miriam was desperate for another pet to replace Pepper. I pointed out that there was no point in getting another hamster, as said cat had obviously now acquired a taste for hamsters and would not be deterred. My husband said “no more cats” as we already had two house cats – one belonging to each of our two older daughters.

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However once Leah began to have investigations for a blood disorder I started to think very seriously about Miriam’s need for another pet of her very own.

By mid February 2013, I had become convinced that Leah had some form of bone marrow failure and was seriously ill, although at that stage the paediatric haematologist in the Royal stated that Leah’s weekly blood results were “not consistent with any nasty bone marrow diseases“! I didn’t believe this doctor, but I hid my fears and wore a smile in front of Leah and recorded my thoughts in my diary.

I felt that a having a pet of her own would provide Miriam with a source of comfort as well as a distraction, during the inevitable disruption to family life that we were facing.

On Saturday 16th February, the start of midterm, Leah and I accompanied Miriam to our local animal shelter to choose a new cat. Miriam chose a young tabby and called it Mittens.

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Mittens came with quite a crazy but very endearing personality. Having three house cats in our tiny bungalow, along with a daughter who was severely immunocompromised, proved to be a bit stressful for Horace and I.

Mittens had no road sense. If anyone left the outside door open Mittens darted straight across the road like greased lightning. Then Miriam ran across the road after her cat and my husband ran after Miriam. The many stresses of family life!

When Leah was on intravenous antibiotics for a week, the Rapid Response nurses came to our house three times a day to administer these via a drip and the cats were into everything – I was quite embarrassed at times and secretly hoped that these nurses were animal lovers!

Leah’s cat Charlie appeared to miss her terribly once she left for Bristol and sadly he was killed on the road while we were away.

The decision was made that once we moved into our new house after Leah’s transplant, there would be NO cats allowed indoors. I think the cats coped with this better than the children, but at least it drew Miriam outside for some fresh air!

Miriam absolutely adores Mittens and often wears her like a scarf. Mittens and Flash (Rachel’s cat) often sit on the window sills on either side of our front door, like guards on sentry duty.

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Recently I was away in Belfast at a Women’s Conference with a group of women from our church. I phoned my husband in the afternoon and heard the words that I did not want to hear “Mittens has been hit by a car and is injured.” Mittens was still alive and in no distress, but lying in her bed and reluctant to eat or drink. My heart sank.

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Thankfully Mittens recovered from this trauma but the experience reminded me of when Leah’s first cat Bibs died. He was a very affectionate cat who had come into our lives when my mum was ill.

My mother died early in 2008.

I picked up Bibs dead on the road later that year at 7am on a cold November morning and sobbed my heart out. Leah was just about to sit her 11+ Transfer Test so we had to hide the news from her for a period of time. Leah absolutely broke her heart when she found out. I remember her sitting at the kitchen table crying like she was never going to stop. As a mum I felt so helpless in the face of my daughter’s utter devastation.

Sometime after this Leah wrote an account of the life and death of her beloved cat Bibs – I cried when I first read it and reading it even now reduces me to tears.

MY MEMORABLE EXPERIENCE by Leah Whyte

Well, my story begins with a little stray kitten, who I just happened to fall in love with. So, I guess I should tell you just how this little kitten happened to walk into my life.
Me, my dad, my brother and sister, were going to Derry to pick my mum up from the bus depot as she had been away in Cork.

On the way my dad stopped at a man’s house. This man happened to feed cats and he stumbled upon that poor little kitten that became a most loved pet. The man offered the kitten to me. My dad doesn’t like cats much but he has a kind heart and he wanted to help the kitten so now I had my very first cat, all of my own.

I don’t think he liked the car much because he meowed and scraped at the window. But I was smart enough to know not to open the window. Finally he settled down on my knee. Thankfully he didn’t need the toilet.

As soon as we got home I rushed inside to show my older sister my, yes I’m proud to say, my cat. She was also excited. We decided to call him Bibs as he had a black bit at the bottom of his chin.

I so definitely didn’t want to go to bed but, it was getting late and I had school in the morning. With help from my dad I made a bed for Bibs by the fire so he would be warm. I made sure Bibs was comfortable. I climbed into bed amazed at what an exciting day I’d had.

After school the next day and for weeks to come I slowly introduced Bibs to Flash, my sister’s cat and was surprised as they got on extremely well.

Bibs was a very good cat, although i disapproved whenever he had feathers stuck to his mouth, as he had a really bad habit and if you haven’t guessed yet, yes, he liked to eat birds. He also couldn’t sit still for five minutes, Bibs was a very playful cat and very hyper.

Ok so now we are in December 2007 and we’ve been together four months. I’ve been to the Pound Shop ( yes everything is a pound) and I’ve bought Bibs a cat stocking with cat treats and cat toys inside. On Christmas Day I opened my presents. I then brought Bibs in to open his. Ok, I admit it, I opened his, but cats can’t exactly open presents can they? Bibs didn’t show much enthusiasm but he seemed happy enough.

I wasn’t sure when his birthday was. So I made up that it was the 16th August. He didn’t understand what all the fuss was about. I made a birthday cake with cat food and he scoffed it all up.

This is the tragic part of my story: So now it’s the 8th November 2008. I couldn’t find Bibs, but I didn’t really care as sometimes he did wander off. Then my dad breaks it to me; he found Bibs dead, my poor Bibs was ran over by a car. My mum and dad decided not to tell me until Saturday even though he got ran over on Thursday, as on Friday I had my 11+ transfer test and a wedding straight after. I cried and cried. I couldn’t believe Bibs was gone forever and ever.

Now comes the even worst bit; I had to bury him. Dad picked a nice place down by the stream to bury him. I picked Bibs up and held him as close as I dared, I didn’t want to get blood on my top. No purr, no heartbeat, no warm body, instead a cold stiff cat. Those once energetic legs, never to be bent again. I set Bibs in the hole, realising this was goodbye. I tried to cover him with soil using the spade. But I couldn’t see, I could have cried a river. We planted daffodil bulbs to grow in the spring. I will never forget my darling Bibs. I still miss him a lot; he will always be in my heart; my beautiful little black and white cat.

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The GP Appointment

The GP Appointment

My husband found our 2012 Family Planner in our old house and left it lying on the kitchen table in our new house today. Of course I immediately flicked to December. There it is – so innocent looking – Leah’s GP appointment. The one that changed our lives forever.

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She’d had some health concerns for a couple of months late in 2012 but Leah wouldn’t take time off school to go to the GP. When I phoned and asked for an appointment with our favourite GP during the school holidays, they gave us one for the day of Leah’s 15th birthday – 31st January 2012.

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Our GP phoned on Thursday morning 2nd January ’13 to say that Leah’s blood picture was very abnormal and that I needed to bring her to the Health Centre immediately. I told her that we’d had a somewhat similar scare with Leah’s blood results when Leah was a toddler. Full investigations had been done then and nothing untoward had been found so I really didn’t see the need for a major panic on this occasion either. Leah was in Limavady being treated to lunch by her cousin and I would bring her to the Health Centre in the early afternoon.

When I took Leah to the Health Centre that day she had a full medical examination, eight blood tests and a urine test for Bence Jones protein. The next day the GP phoned to say that there was no evidence of leukaemia but that Leah’s bloods were very abnormal and therefore monitoring and investigations would be ongoing. I wasn’t unduly anxious at this stage.

However in mid February Leah’s blood results were in my opinion particularly alarming. I had phoned in for them shortly before leaving work at 5pm. After hearing them I just couldn’t stop crying. The various consultant haematologists involved in Leah’s care had assured me that Leah’s blood results weren’t consistent with any nasty bone marrow disorders, but I didn’t believe them. I wrote in my diary in February ’13 that I thought that Leah had some rare form of bone marrow failure.

The journey home from work normally takes me 30min max – that evening it took me 2hrs – I kept having to stop the car to cry. I was distraught – I just knew that something wasn’t right. I pulled into the darkness of a rural filling station that was closed for the night and sat there. I phoned an elderly very Godly woman who was then the Clerk of Session in our church – that means she was our most senior church elder. I told her everything. She prayed over the phone with me the most beautiful inspiring prayer – by the time she was finished I was calm enough to face home. I certainly didn’t want Leah to think that I was worried about anything.

In March 2013 Leah was sent for a bone marrow biopsy, but by this stage I had calmed down again. I was very reassured by our consultant’s words and his upbeat demeanour: “We’re only doing this test to put everyone’s minds at rest. We are 95% sure that we won’t find anything sinister in Leah’s bone marrow.” We waited four weeks for the results and the longer we waited the more convinced I became that there was nothing wrong.

On Friday 19th April 2013 @ 4.20pm I answered a withheld call and heard a doctor I had never met utter the words “Has anyone given you the results of your daughter’s bone marrow biopsy?” followed by “Leah has myelodysplasia and she needs a bone marrow transplant.”

I felt so angry and so betrayed.

Yet I knew in my heart and soul that there had been no mistake – I knew that this was the only diagnosis that could possibly make sense of Leah’s constellation of symptoms. The minute that doctor spoke, a little voice inside my head said “He’s right you know.” From January to March other possible diagnosis had been offered to us and somehow they just didn’t sit right with me, but this time was different – I didn’t WANT to believe it but I knew it was true.

As the doctor continued talking, Leah sat beside me googling every word on her smartphone. By the time I got off the phone she probably knew more than me. However her peace and serenity and trust in God’s will for her life never seemed to waver.

Leah and I taught Children’s Church together on Sunday 21st April 2013, with the help of some of the other young people from our church. We taught the children the following Bible verse:

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What is our true hope? It is the hope of sins forgiven and life everlasting.

We hope for other things too – like strength for the journey:

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Here’s the most recent song that I play on repeat and derive comfort from:

“I Am Not Alone”
By Kari Jobe

When I walk through deep waters
I know that You will be with me
When I’m standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear

I am not alone
I am not alone
You will go before me
You will never leave me

In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
And I will not fear

You amaze me
Redeem me
You call me as Your own

You’re my strength
You’re my defender
You’re my refuge in the storm
Through these trials
You’ve always been faithful
You bring healing to my soul