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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Endless Hallelujah”

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

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

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

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

Facing the No-Go Areas

Facing the No-Go Areas

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Tomorrow Tuesday 29th April ’14 Horace and I are going to the Cancer Centre at Belfast City Hospital to meet with Leah’s Belfast haematologist and her Bristol haematologist – two very compassionate men, both of whom were adored by Leah.

They will give us the results of the mini post mortem of her lungs and this might give us more of an understanding of some of the medical factors involved in her death.

The mere act of walking through the doors of BCH will take a lot of courage, never mind the conversations that will follow. We hope to meet with some other members of the team who were very special to Leah also.

The appointment with our Bristol haematologist Dr C, has been in place since before Christmas, as it was originally made for Leah to see him and to have her ongoing recovery from her transplant assessed.

Leah planned to make some tray bakes as a gift for Dr C on this occasion. She had discussed with me what she would make – “fifteens’ (without cherries) and malteser squares.

Yesterday Miriam and I did this baking in Leah’s memory – it’s what Leah would have wanted us to do. Click here for step-by-step instructions on how to make Leah’s favourite fifteens.

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We used the Waitrose chocolate chips (for the ‘fifteens’ ) that I had bought when we were in Bristol for Leah’s transplant and we were saving for a special purpose – Leah loved these Waitrose chocolate chips.

Delving into the baking cupboard again was emotionally painful – it’s been one of my no-go areas since Leah died.

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If I had a choice, I would roll my life back to a time when I didn’t know my way around the ground floor of Belfast City Hospital, to when I didn’t know exactly which sandwiches in their coffee bar I liked best, which of their buns were the nicest and which of the hospital toilets had a hook on the back of the door to hang my handbag on……………. but I don’t have that choice.

I can only go forward, I can’t go back. I have to live life in the present, and that isn’t always easy, just as it isn’t easy for so many other people either, for a variety of different reasons.

I have learned that a lot of people are carrying heavy burdens, some like me carry the visible burden of grief while others carry secret burdens involving shame and fear.

God knows all about our burdens – evidenced by verses like this in the Bible –

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If I can find the strength, I want to visit the Bridgewater Suite tomorrow, where Leah had most of her outpatient appointments. I also want to visit the ICU where Leah spent her last days on this earth, as I don’t want to have any no-go areas in my life.

Who knows what circumstances in life may result in my having to visit those places again in the future and I would like to have these “firsts” behind me.

Our TYA (Teenage and Young Adult) cancer nurse specialist will be by my side supporting me wherever I decide to go.

Obviously, this day is going to be laden with emotion and with some incredibly difficult memories. The two and a half weeks that Leah spent in ICU were the hardest two and a half weeks of my entire life.

The majority of the most traumatic (for me anyway) outpatient appointments during Leah’s illness also occurred within the walls of Belfast City Hospital. Please can you pray for Horace and I tomorrow and keep us close to your hearts.

Painful though all of this is, I believe that it’s very necessary on our path to healing.

Not that we will ever be fully whole again – we will always bear the scars of losing our precious daughter – and so we should – as our four children are part of who we are.

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I have always said that my children are my most precious possessions in life.

I don’t wish Leah back, because her body was broken and she has now received the ultimate healing and is rejoicing forevermore with her Saviour in heaven.

However, the person we have lost is precious to us beyond words, as each of our children are, so our grief and pain will continue.

Another song that Leah loved was “Like a lion” by the David Crowder band and it was one of the ones that we played quite a lot when Leah was in ICU –

“My God’s not dead
He’s surely alive
And He’s living on the inside
Roaring like a lion”

The image of His strength inside of me being like a lion, when I felt – and continue to feel – so very weak, is a helpful thought.