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.
A Longing Fulfilled

A Longing Fulfilled

“Hope deferred makes the heart sick,

but a longing fulfilled is a tree of life.”

Proverbs 13:12 NIV

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Leah

Seventeen years ago on the 31st December 1997 at approximately 8.30am Leah Alanna Whyte was born in Altnagelvin Hospital, weighing 9lbs 3oz. Her sister Rachel, was three and a half years old.

We hadn’t chosen for the gap to be this big. Leah was conceived while we were having investigations for secondary infertility.

Leah was what the Bible calls “a longing fulfilled“.

If she had been a boy she would have been named Samuel, after the Old Testament story of Hannah, who had longed and prayed for a baby.

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Leah

I have always adored babies. As a child growing up I imagined that I would be married by the age of twenty five and then I would have six children. When they had grown up, I imagined that I would become a foster parent, to ensure that my house was always filled with children.

Hmmmm………..somewhere along the way, reality set in.

For starters, by the time I was twenty five, I was conspicuously single. I had just come out of a three and a half year relationship with the man I had thought I was going to marry. My dreams lay in tatters on the floor.

It is good to have plans.

It is good to dream dreams.

However the Bible says

“Many are the plans in a person’s heart,
but it is the Lord’s purpose that prevails.” Proverbs 19:21 NIV

Many years on, I hope that I’m learning to be more like Mary, the Mother of Jesus, when she said:

“Behold the maidservant of the Lord! Let it be to me according to your word.” Luke 1:38 NKJV

Having one child did not lessen my desire for another baby. If anything it intensified it – now I really knew how wonderful it was to be a parent.

I was so excited about being the mother of two children. When we used to pack the car for our regular trips to stay with my mother in Co. Meath, she used to tell me on the phone “I can’t wait to see your girls.

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Rachel and Leah, June 1998

I used to savour that word “girls” – how I loved the fact that it was plural. I used to gaze in wonder at the two child seats in the back of our car and I felt as if my heart was going to burst with joy.

Six months later I was happily pregnant with baby number three – Simon.

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A few years later along came a very pleasant surprise – Miriam.

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Miriam

When Chris De Burgh’s daughter Rosanna was born he wrote this beautiful song about her.

It sums up how I felt this day seventeen years ago and indeed how I feel about each one of my “babies”.

“For Rosanna”

This is for Rosanna, sweet girl of mine,
A song for the baby who changed my life,
I’ll never forget when I saw you first,
I thought that my heart would burst,
With the love that I have;

As I watch you sleeping in here tonight,
And I hear your breathing so soft and light,
I cannot believe all the things that I feel,
When I hold you next to me,
It’s the love that I have;

Oh how my heart it is shining,
Oh how my heart it is shining,
Oh how this heart is shining through,
With the love that I have;

And as you are growing from baby to child,
I share the wonders that are in your eyes,
And I am amazed at the way you change,
All according to the plan,
And the love that I have;

And when you are older you will go away,
You’ll see injustice and you’ll see pain,
But never forget that I’m always there,
Like a shadow by your side,
With the love that I have;

Oh my love, you have your mother’s eyes,
And when I see you laugh, you have your mother’s smile,
And you are mine all of my life,
You are mine, all of my love,
You are mine, blood of my blood,
You are mine;

Oh how my heart it is shining,
Oh how my heart it is shining,
Oh how my heart it is shining through,
With the love that I have.

Driving to Belfast

Driving to Belfast

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Sunday 2nd June 2013 was the first time that I ever drove to Belfast myself.

I don’t particularly like driving, I have no sense of direction and long distance driving can be one of my migraine triggers.

All of these together are very good reasons why I had never driven to Belfast before this. However now that Leah was unwell and having regular appointments in Belfast, I knew that I had to acquire the ability to drive the 140 mile round trip from our house to the hospitals there.

This time last year was when Leah was going through the process of having her eggs harvested to preserve her fertility. Her scan appointments were every two days, including Sunday.

We left the house around 8am and the roads were lovely and quiet. My eldest daughter navigated very well and we had detailed directions drawn by my husband. Leah dozed on the back seat. Her energy levels weren’t great and early mornings were difficult for her.

The appointment at the RVH didn’t last long on this occasion and we were soon back on the road again. We stopped off at a favourite beauty spot with our family over the years – the Antrim Forum on the shores of Lough Neagh.

We’d remembered to bring bread for the ducks and swans. I grew up in Cork City and feeding swans and ducks on a Sunday was always a big treat.

 

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After this we headed into Ballymena to Frankie & Benny’s
It was Rachel’s 19th birthday the following day so I was treating us to lunch. We had a nice day.
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A few weeks ago Leah’s lovely gynaecologist phoned from the Regional Fertility Clinic to let me know that Leah’s eggs would be destroyed.

When Leah was having her eggs harvested we had to sign a form to say that if she died then her eggs could be destroyed – it’s UK law. Leah’s gynaecologist was very gentle with me on the phone and she gave me all the time that I needed.

Before Leah died she received funding from one of the Cancer Charities to plan a special treat for herself with her older sister Rachel. Unfortunately Leah died before this could be arranged.

I suggested therefore that the money be used for Rachel and I to spend some special time together. So this year for Rachel’s birthday she and I are using this money to have a ‘midweek break’ in a nice hotel. I’m looking forward to chilling out with Rachel this week in the hotel’s leisure facilities.

 

Maybe deep down inside we somehow knew this little one would only be with us for a season

Maybe deep down inside we somehow knew this little one would only be with us for a season

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“This won’t affect your fertility” I was still groggy from the anaesthetic and doped from morphine but these were very welcome words from Dr Martin, our consultant gynaecologist.

He had just removed a gangrenous ovary and fallopian tube from my left side.

Rachel, our only child at the time, was 18 months old.

By the time Rachel was 2 years old there was still no sign of a brother or sister for her.

I was in my thirties and every month that I didn’t get pregnant felt like a bereavement.

My mother sent money to the Poor Clare nuns in Cork to light a candle and pray for me to get pregnant.

Horace’s sister Evelyn, a Presbyterian deaconess and his other sister Audrey, also laid hands on me and prayed over me.

Horace & I just adored Rachel and knew what a blessing children were & are and we wanted more of this blessing – we were desperate for more children.

For us, having one child didn’t make the longing for a second child any less – if anything it strengthened that longing.

We read books about secondary infertility, talked to trusted friends and went to our GP.

Thankfully and without medical intervention I eventually became pregnant.

Rachel was three and a half years old when Leah was born on New Year’s Eve 1997.

When Rachel was a baby I tried too hard to do everything right – and probably did lots of things wrong – and she seemed to be grown up before I knew it.

This time round was going to be different – I was going to relax and savour every minute of Leah’s babyhood.

In the evening when Rachel had gone to bed & the housework was done, I used to lift my sleeping little baby out of her pram/cot and cuddle her, drinking in her babyness.

Later on when Horace was coming to bed he again lifted Leah from her cot, still sound asleep, and walked around with this placid little baby in his arms, just appreciating her babyhood.

He continued to do this until Leah was a toddler and became too heavy for him to lift and cradle in his arms.

Maybe deep down inside we somehow knew that this little one would only be with us for a season and that we needed to treasure every moment……..

 

GATA2 genetic mutation

GATA2 genetic mutation

It was the last Thursday in June 2013 and my eldest daughter had just left for America.

By now I was well used to getting calls from withheld numbers so I answered the phone as soon as it rang.

It was Dr C from Bristol Children’s Hospital and I instantly knew by the tone of his voice that something was wrong. He said “We have completed Leah’s gene sequencing and discovered that she has a GATA2 genetic mutation that can cause a familial type of myelodysplasia.”

He went on to explain that the next step would be to test Leah’s brother (the hospital already had samples of his blood suitable for this) to see if he was carrying the gene. If he was found to be carrying the same genetic defect, then his bone marrow could not be used and Leah’s transplant would have to be postponed until a suitable match could be found from the world wide registry.

Dr C said there was several types of GATA2 gene mutations and the type found in Leah’s blood (p.Thr354Met) had never been seen in the UK before. My husband and I also needed gene testing as a matter of urgency.

Depending on which of us tested positive, then they would know who else in the extended family would also need testing. An appointment was made for us to see the geneticist in Belfast on the following Monday.

My world was spinning out of control and I was struggling to breathe.

I thought I already knew how bad this could get.

I had only recently begun sleeping through the night again since Leah’s original diagnosis in April. My concentration and attention span had almost returned to normal.

Now I could once again feel the physical symptoms of shock seep through my body.

Did this mean that more than one of our four children could have a ticking time bomb inside their body?

Would we have more than one child needing a bone marrow transplant?

Would Leah ever make it to transplant?

I needed to rein in these thoughts and focus.

I asked Dr C if he had informed our hospital consultant in Belfast about this latest development and he replied that he had an email ready to send to him but he wanted to discuss it with me first before informing him.

Dr C said that we would know whether our son or ourselves were carrying this genetic defect by the end of the following week.

When we had our first outpatient appointment in Bristol, Dr C had discussed with us some possible genetic implications of Leah’s situation and had put in a referral to the geneticist in Belfast.

I hadn’t really liked the sound of this and had secretly hoped that it would be many months before we found ourselves face to face with a geneticist, listening to potentially more bad news.

Now here it was and I was scared.

I was also relieved, that in the light of what we now knew, that we didn’t have long to wait for further clarification.

Overall, the NHS has been very good to us.

As soon as I got off the phone Leah was by my side “What did he say?

She never missed a thing.

I had left the room to take the call but she had heard me say hello to Dr C. I tried to take the sting out of the news as I repeated the information to her, I tried very hard not to sound like I was in acute inner turmoil.

I explained about genetics and patterns of inheritance and stressed that it was really important not to speak too freely about this until we knew what we were working with.

I said that I understood that she needed emotional support and advised her to choose a small number of close friends whom she could trust, and to confide in them and get them to pray for and with her.

I really wished that I didn’t have to tell my 15 year old daughter about any of this stuff, but the geneticists appointment on Monday was for her, as well as for my husband and myself.

As always Leah appeared to deal calmly with the information.

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On Friday (the next day) our haematology consultant in Belfast City Hospital phoned me. He asked me how I was coping.

I said that I was quite stressed, but that I knew that he and Dr C were excellent doctors and that Leah was in good hands. I also told him that no matter what lay ahead for us as a family, that God would give us strength for the journey. His genuine kindness and concern were very evident.

Saturday morning I was feeling so crushed, defeated and devastated that I just didn’t know how I could possibly keep going.

I halfheartedly opened the STREAMS IN THE DESERT App on my phone that I used every day and read this re Numbers 13:33 – they saw the giants but Caleb and Joshua saw God. Those who doubt say “we can’t do this” but those who believe say “let us go on……for we are well able

It was the most appropriate word of encouragement I could possibly have received.

One of the constant challenges for me in all of this has been the question “Do I really believe what I say I believe?”

If I truly believe in a God of love then what is there to fear?

Realistically speaking though, one of the big problems is the emotional roller coaster you step onto when a life threatening illness enters your life.

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You think you know what life is all about then wham! the roller coaster takes a nose dive and none of your existing strategies or coping mechanisms are anywhere near enough to get you through this new phase in your life.

With each new development along the way you have to learn new coping strategies.

When the roller coaster stops for awhile you might even think that things really aren’t all that bad, but suddenly and with no prior warning the roller coaster car takes off again at breakneck speed and this time the dips are steeper and the rails seem thinner and there’s even a few loop the loops and once again you ask yourself “Am I able for this?

For me the answer to that question has to be “I am weak but He is strong

Monday came and the three of us headed out on the by now all too familiar 70 mile journey to Belfast City Hospital.

The geneticist turned out to be pleasant, friendly and easy to talk to.

We had a list of questions.

He told us that GATA2 mutations are inherited in an autosomal dominant way, so if either Horace or I tested positive then the siblings of whichever one of us tested positive would be considered for genetic testing also. If one of our siblings tested positive, then their children could possibly have inherited the genetic defect too. The best case scenario would be for both Horace and I to test negative.

He also said that someone could have the genetic defect and not develop myelodysplasia, although they could develop other disorders associated with GATA2 mutations.

We asked about Leah’s eggs that had been harvested and he said that her eggs had a 1 in 2 chance of being affected by this genetic mutation and when the time came for Leah to need them she could be referred to Guys Hospital in London for pre implantation genetic diagnosis.

On Friday 5th July @ 10.30am Dr C phoned us with the good news that the Horace, myself and Simon were clear of the GATA2 genetic defect. He said that this meant that Leah’s genetic defect was “de novo” i.e. this was the first time that it had occurred in our family.

I was so relieved to hear this news that I was scarcely capable of coherent conversation. Once again I felt weak and on the point of collapsing, but this time it was for happy reasons.

It was such very welcome news.

The roller coaster car that I was travelling in, glided temporarily into a lay-by.

The Loss of Innocence

The Loss of Innocence

Another stage on this journey that I couldn’t post about while Leah was alive was the harvesting of her eggs from her ovaries in June 2013 – a procedure that was intensive, invasive, exhausting and painful and one that tore at my heart as her mother.

As soon as Leah heard that the chemotherapy cocktail she was to receive would leave her infertile she wanted to know how her fertility could be preserved.

Anyone who knows Leah knows that she adored babies and children. At her request she was referred to the Regional Fertility Clinic in Belfast and we were subsequently told that she was the first woman in Northern Ireland to have her eggs harvested (cryopreservation) on the NHS, as well as one of the youngest in the U.K..

It was a process similar to IVF and Leah had to give herself two hormone injections per day for around 10 days and attend the RFC at the Royal in Belfast on alternate days during this time for scans of her ovaries. This necessitated a 140 mile round trip each visit.

We spent up to 3hrs in the Waiting Room of the Fertility Clinic waiting on blood results on the days we attended, interspersed with trips over to the main hospital for an ice-pop – Leah loved ice cream.

We must have looked a strange sight – a menopausal women and a young teenage girl – surrounded by anxious couples holding hands, desperately hoping that medical intervention would enable them to produce a beautiful little baby.

We never communicated with any of these couples nor they with us – we didn’t belong in their world and they didn’t belong in ours.

We looked for the quietest corner of the waiting area and Leah used this time to study for her GCSE maths module exam on the 11th June (in which she achieved 100%).

I marvelled at Leah’s calmness and composure and her ability to focus.

I remained calm on the outside for her sake, but inside my heart was breaking, because my daughter was having to grow up so fast and deal with so much.

The days that we didn’t have hospital appointments I spent prolonged periods of time reading my Bible and praying and seeking God for the strength to become the Mum that Leah needed me to be.

Eventually on Wednesday 5th June 2013 the day came for Leah’s eggs to be harvested under deep sedation, but the anaesthetist was nervous about Leah’s low blood counts. What should have been a 2 – 3 hr hospital visit turned into an all day stay, with the consultant wanting to admit Leah overnight for observation and Leah insisting on going home.

Leah was taken to the operating theatre in the Maternity Suite. I sat quietly in the Waiting Area, alongside relatives of women having babies.

When the procedure was finished the doctor came out and cheerfully called over to me “Everything went very well.

As soon as the Dr disappeared, some grandparents sitting nearby beamed at me and cheerfully said “congratulations“. I took a deep breath and replied “It’s not what you think” and explained our situation as best I could. The woman took it not so bad but I could see that the man was really struggling with what he was hearing.

Leah had 22 eggs harvested from her ovaries, 18 of which were described as being of “good quality”. The staff were all amazed at such a good result. We had to sign a form to say that if Leah died then her eggs would be destroyed.

Leah wasn’t allowed to take the stronger pain relief normally used in those circumstances due to her low blood counts. She had quite severe abdominal pain for several days afterwards as her body gradually returned to normal.

The painkillers that she was given made her vomit and caused gastritis. Her greatest ease came from a hot water bottle.

On Friday 7th June Leah took part in the Presbyterian General Assembly Youth Night in the Waterside Theatre as part of the LOST team.

I’m sure very few if any of the people there knew how unwell she was feeling, but it was so important to Leah to be able to honour all her commitments, especially those connected with her Christian faith.

This photo was not taken that night but at a previous L.O.S.T. event that Leah took part in.
This photo was not taken that night but at a previous L.O.S.T. event that Leah took part in.

The staff who attended to Leah at the Regional Fertility Clinic were absolutely lovely and the Dr there told me since that she was “so impressed with Leah’s strength and maturity in dealing with her situation“.

I am so proud of Leah but I know that she herself would not want to take the credit for her strength, but would say that the secret of her strength was in her daily walk with God.

During the times this past year when Leah was too weak and ill to lift the Bible to read or to pray she always ensured that I – or Nic, her boyfriend – read to her and prayed with her.

2 Corinthians 12:9
‘Each time He said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.’

Another song that Leah and I liked was

Your grace is enough” by Chris Tomlin