Walking Taylor Home

Walking Taylor Home

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I’ve just finished reading the book Walking Taylor Home. It’s the type of book that I would have devoured in a few days, before Leah’s illness and death took it’s toll on me.

Now it’s taken me a few weeks to read, due to a combination of poor concentration and me needing to stop regularly to cry and give myself an emotional break.

It is however a very heartwarming true story and I feel the richer for having read it.

There are some parallels to our own journey and many differences.

Bone Marrow Transplant Unit, Bristol, July 2013
Leah in the Bone Marrow Transplant Unit, Bristol, July 2013

Brian, the author, is the dad of a pre-teen son Taylor who was diagnosed with cancer. Brian chronicles their journey via detailed, heart wrenching but also witty, email updates that he sends out to praying friends. These later become the basis for this book.

Initially Taylor has chemotherapy and surgery and everything is looking good. However his cancer soon returns with a vengeance. Difficult conversations have to be had and tough decisions have to be made.

Eventually Brian has to have the conversation that no parent ever wants to have with their child – the one where you prepare them for the possibility of their own death.

Last week I had coffee with the doctor who, on the 28th December ’13 admitted Leah to ICU in Belfast City Hospital and then took me into a room to tell me that my daughter was possibly going to die.

Less than 36 hours previous to this I had a daughter who was very excited about going to her first big family party since her bone marrow transplant. Suddenly she and I were faced with discussing the possibility of her death.

At home on the 20th December 2013
At home on the 20th December 2013

I had never rehearsed this moment, I had no preplanned script. I had always thought that there would be more time.

If living with cancer feels like being on a roller coaster, Leah’s bone marrow transplant felt, at times, like one very nasty game of snakes and ladders.

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The transplant process itself was like climbing a very steep ladder. Then, at the end of August ’13 Leah progressed to being transferred out of the transplant unit in Bristol Children’s Hospital to their beautiful state of the art, purpose built Adolescent Unit. All of Leah’s blood results were going in the right direction. We were ecstatic. We thought we only had to roll a six and we would be home.

However the next roll of the dice landed us on the nasty snake of graft vs host disease.

Steroids along with some other meds (MMF & methotrexate) brought her GVHD under control, so we climbed another ladder – eager to roll the numbers that would take us home. Instead we rolled again and landed on another snake – Leah developed haemorrhagic cystitis caused by BK polyoma virus and was back in the transplant unit.

This snake was particularly venomous, but eventually we got out of hospital and were told that we could book our flights back home to Ireland. Within days, the next roll of the dice caused us to once again step on a snake, resulting in yet another readmission to the transplant unit.

Oh how I hated this cosmic game of snakes and ladders. Thankfully soon after that we did make it back to Ireland. We got approximately six weeks at home before the final roll of the dice landed us on the biggest and most venomous snake to date – pneumonitis or idiopathic pneumonia syndrome.

I wanted to be emotionally available to my daughter in ICU and I needed to stay strong at all times, so I couldn’t allow myself to process the emotions produced by any of this while it was all still happening.

I was really looking forward to meeting up with this doctor last week, as he showed us so much kindness and compassion during our two and a half week stay in ICU. I enjoyed my rendezvous with him and we had a good chat.

However, meeting up with this lovely doctor also reconnected me with the shock that I had experienced, but suppressed, when the 36 hours between Friday morning and Saturday evening, brought about the dramatic transition from happily discussing the impending family party with Leah, to sadly discussing the possibility of her impending death.

This triggered a huge wave of grief last weekend.

I don’t however have any regrets about meeting up with this doctor. I’m very grateful to the members of staff who cared for Leah and who have since made time to meet me for coffee. This helps me to process my thoughts and contributes towards my healing.

In the book “Walking Taylor Home” Brian does not shy away from the difficult spiritual questions such as the issue of “healing”.

At all times he allows that God can and does heal, but asserts that God is not like the genie in the lamp, dishing out healing based on enough people rubbing the lamp in the right way.

Brian is very honest about his spiritual struggles as the parent of a dying child. There was so much that I could relate to, even though I had to take regular emotional breaks.

For me it wasn’t a depressing book. It was dreadfully sad yes, but Taylor’s beautiful personality and the incredible bond between father and child was so touching.

I suppose that what I liked and what comforted me – through my tears – was that Brian, like me, recognised that part of being a parent was to lovingly prepare his child for death and then let him go, into the waiting arms of a loving Heavenly Father.

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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.