Leah and Timothy

While browsing through photographs earlier I came across this photograph. It gripped me with it’s simplicity. It was Leah with her little cousin Timothy who she absolutely adored.

My iPad tells me that this photograph was taken at 11.20am on the 2nd January 2013. Leah took the photo but I can remember very clearly the events of that day and exactly what I was doing around that time.

I was taking a phone-call from our GP who had been contacted by the haematologist at our local hospital regarding Leah’s blood tests, to say that there was a possibility that Leah may have leukaemia or something similar. The doctor wanted me to bring Leah to the Health Centre straight away.

I informed the doctor that Leah had just left to have lunch in Limavady with her sister and her cousins, as a treat for her fifteenth birthday which had been a couple of day’s previous. I said that I didn’t want to spoil their fun and I would bring her down as soon as they got back.

The GP said that the haematologist dealing with this was going on holidays to the South of Ireland at 6pm and he was very keen to run a range of blood tests on Leah with a view to making a diagnosis, before he left for his holidays. I insisted that I wasn’t willing to interrupt this special time that Leah was having, but that I would have her at the Health Centre by early afternoon.

Writing all of this in the cold light of day, knowing as much about blood cancers as I know now, my response sounds ridiculous. However, at that stage it seemed preposterous to me that there could possibly be something seriously wrong with one of my children. I wasn’t going to spoil a special birthday treat just so that somebody could draw more blood from her.
In retrospect I have no regrets either – although I would NOT advise anyone else to adopt such a cavalier attitude – time is indeed of the essence with some leukaemias. Leah loved her little cousin Timothy so much. Six months previous to this, Leah had spent a week in Donegal with Timothy and his mum Paula. Afterwards she had written in her diary “I stayed this week in Donegal with Timothy and I love him more than ever.” 

Leah talked about Timothy frequently when we were in Bristol and she couldn’t wait until she would get to see him again. There was only one problem though, young children are often unwell and the kind of viruses that they contract are the ones that posed the greatest risk to Leah in her severely immunocompromised state. Our consultant regularly warned her “One chance encounter with a snotty nosed kid could kill you, you know.”

When we returned from Bristol, Leah was desperate to see her beloved Timothy. Unfortunately, like many young children in winter, he was prone to having a runny nose. It wasn’t one that cleared up in a hurry either. As Christmas approached, Leah pleaded with her haematology consultant to be allowed to attend the family get togethers that we always have at that time of year and especially to be allowed contact with Timothy, who unfortunately still had a runny nose, but was otherwise very well.

Our consultant, who had been lecturing her about the importance of re-establishing some normality in her life, responded to this request by asking “Do you HAVE to go to these family get togethers?” to which I replied “Yes, actually, we do!” It had now been six months since Leah had seen many of her extended family and she craved this contact.The consultant replied that Leah could go to the get-togethers and see Timothy, on the condition that she didn’t hug him, kiss him or have any face to face contact. We agreed to this.

A little while later another medical professional came into Leah’s room on the Bridgewater Suite to carry out a procedure and her first words to Leah were “I believe that you’re going to have contact with a child with a runny nose?” I didn’t say anything, but it really irritated me, because on the one hand they were telling Leah that she was getting better and that she needed to start normalising her life, yet on the other hand, when all we wanted to do was to spend a little time over Christmas with some of the people whom we loved most in all the world, we were being made to feel like criminals.

Leah didn’t appear to let it bother her and she looked forward with great excitement to the first family get-together on Friday night the 27th December 2013.

We had a routine outpatients appointment in Belfast to attend earlier that day first. Leah became very unwell in the car on the seventy mile journey to the hospital but she tried to get me to promise not to tell anyone that she was sick – so desperate was she to get home for that big family get-together that she had waited so long for.

As each medical professional came and did what they had to do, Leah sat and smiled at them. They never suspected a thing – none of the nurses even noticed what I had noticed – that Leah was breathing at a rate of FORTY respirations per minute – research suggests that an adult with a resting respiratory rate of over 24 breaths/minute is likely to be critically ill.

The last person to visit, after we had been at the hospital for half a day, was our consultant. I drew his attention to Leah’s rapid respirations and he sent us WALKING from the Bridgewater Suite in the City Hospital to the adjoining Cancer Centre for a chest X Ray. Leah was so breathless that I wasn’t sure if she was going to make it. I had to help her dress and undress for the X ray as she couldn’t manage it on her own, she needed all of her energy just to breathe.

When the consultant saw the results of Leah’s chest X ray he was embarrassed that he had sent her walking to the X Ray department in the Cancer Centre and he apologised to us. Admittedly, Leah had tried very hard not to look ill and she had been very successful. Leah was initially admitted to a single room in the Cancer Centre, but within 24hrs she was in ICU and the doctor was telling me that she may not survive.

Leah was so disappointed at not getting to the family party, but she didn’t make a big issue out of it. That is why, at the end of Leah’s life, even though she was unconscious, it was so important to get to the Children’s Hospice so that most of her family and very close friends could be with her.

I wanted to give Leah what she had so desperately wanted – that one last big family get together.

Brokenness

I recently received a lovely encouraging message regarding my blog, from a mum whose son is in remission from his cancer treatment. She told me that although she feels blessed that her son is doing so well, she feels broken from her experience.

The brokenness – oh how I remember this brokenness that she’s talking about.

Although Leah was terribly homesick and desperate to get home, there was a part of me that wanted to stay in Bristol forever.

After spending 14 weeks immersed in the world of childhood cancer, I felt forever changed by what had happened. I felt like I didn’t know how to return to the outside world, or how to relate to those who hadn’t experienced our journey – Sam’s House just seemed a comfortable place to be, where no explanations were ever needed.

The medical expertise to understand and treat Leah’s rare condition lay in Bristol Children’s Hospital. I somehow imagined that if I could keep Leah there forever, then maybe we could beat this disease and all the nasty side effects of treatment. We had formed such close trusting relationships with the staff looking after us.

However the deaths of other children/young people who were in the transplant unit along with Leah, had a devastating affect on me.

I was also distressed about the children and young people dear to us who were still very ill in hospital, or who had just received bad news regarding their prognosis.

I returned from Bristol a broken person.

I felt like we were soldiers returning from the war, unable to celebrate our survival, because of the loss of much loved comrades who had fallen in the trenches.

I worried that people just expected me to be happy and grateful, because Leah had come through her bone marrow transplant and we were home at last.

I did feel thankful, I was very glad that Leah and I were home, but I also felt broken.

I had learned the horrible truth that calpol didn’t actually fix everything.

Nor could I ever again look at bruising on one of my children, without thoughts of leukaemia crossing my mind.

I could no longer treat illness in one of my children with casual nonchalance and tell myself “Ah sure, they’ll be grand.”

I was living in a state of high alert, with an overnight bag for Leah and I packed and ready at all times. If I heard her up to the toilet during the night I became anxious – her health was so fragile. I knew that if she spiked a high temperature, we had approximately one hour to get her to the hospital and on intravenous antibiotics.

I felt absolutely exhausted and totally lacking in energy.

I had no idea how to explain to people how I felt, or how to start rebuilding my life and my sanity.

On the 12th December 2013 I wrote in my journal “There are many days when I experience intense emotional pain. I want to be a walking example of the ‘joy of the Lord’ but I’m haunted by images of sick children.”

Then I wrote out a quote by Jerry Sittser that I had read the night before, that had resonated with me:

“I did not go through pain and come out the other side; instead, I lived in it and found within that pain the grace to survive and eventually grow.” ~ A Grace Disguised.

Farewell Jack ❤️

One of the things that I loved about our Bristol experience was the peer support.

Although Leah was only 15, she was cared for in adult services here in Ireland. Usually when she attended appointments here, the other patients we met were older than me.

In Bristol, Leah was cared for in paediatric services that catered for young people up to the age of 18. We also spent a lot of our time in the Clic Sargent Hostel, Sam’s House, that accommodated seventeen families and young people up to the age of 24.

That’s where we met Jack Jordan. There were three young adult men, all with a blood cancer, all staying in Sam’s House and attending the Oncology/Haematology Unit at the Bristol Royal Infirmary – the three musketeers.

This was a different unit to where Leah received her treatment, but back in Sam’s House in the evening, I would hear them laughing and joking about their latest escapades.

Matt, Pete and Jack

Jack was the quietest of the three, but he enjoyed their companionship.

Leah used to worry about Jack because he was so quiet. Jack was so pleasant and well mannered, as were all three of the young men.

I have a lovely memory of Jack and his Nan having tea with Leah and me one evening in Sam’s House. Leah and I were so far from home and family that our friends in Sam’s House became our temporary family.

After Jack relapsed in December 2014, we started talking via Messenger. He said he could remember us trying to feed him pizzas and take-aways at Sam’s House. That made me laugh – that would have been Leah and me alright!

Then he said the most beautiful things regarding my daughter: “Leah was always nice to me and had a great smile! Made me feel welcome and a friend.”

What beautiful words for a young man who was ill, to say regarding another young person who had also been battling a life threatening illness. Jack’s words really blessed me – letting me know that my daughter’s kindness had touched his heart.

I know how much Leah had cared about each and every child and young person that she met during her illness and how each and every one was faithfully prayed for by name each day. This is an excerpt from her prayer diary:

Earlier this year, Jack was expecting to be going for a life-saving transplant and we continued to talk via messenger.

He’s such a gentleman, he invariably replied to my messages with something like
“Thank you for all of your prayers and kind words Vicky you have really helped me a lot”

I had left Bristol before Jack and Laura got together, but he told me how happy him and Laura were and how much he loved her:
“Laura is amazing I love her and am so happy we are engaged ❤️”

Then, on the 14th April, Jack sent me the saddest message of all:
“Hello Vicky. I just wanted to tell you my cancer has come back and there is nothing they can do for me now. I’m getting married on Thursday 😊 I just wanted to say thank you for all your care, support and love you’ve shown me x”

Despite the sadness, I was so excited that Jack and Laura were getting married. I would have absolutely loved to have been there. I poured over every wedding photograph, along with members of my family.

16th April 2015

Then, on Monday 20th April, I received my last message from Jack: “I’m just tired all over vicky ❤️”

I knew what that meant, I could read between the lines.

Today, Jack’s wife Laura, her little girl Lily, his family and his friends, said farewell to somebody very dear, somebody whose passing will leave a gaping hole in the lives of those who were closest to him.

Even though I’m a nurse and at the time of Leah’s diagnosis, I was sharing an office with the Community Children’s Nursing team who look after children and young people with a cancer diagnosis, I had somehow thought that nowadays cancer in children/young people was almost 100% curable.

Well I certainly got that wrong – very wrong.

Yes, thankfully, very many children and young people do survive, but the treatment journey can be long and gruelling. Some are taken by the illness, while others, like our daughter, are taken by the side effects of their treatment.

Those of us who are left behind then begin a different journey – the painful road of loss, of grief and of mourning.

At first, those closest to the loved one, may have the edge taken off the intensity of their loss, by the numbing effects of busyness and exhaustion.

However, as days become weeks and weeks become months, the harsh reality sets in.

We have loved and we have lost.

Those who have loved much will grieve much, indeed grief is the price we pay for love.

Those of you who are parents of young children will no doubt be familiar with the popular story We’re Going on a Bear Hunt by Michael Rosen.

There are two lines in this story which, in my opinion, describe the process of grief very accurately:

“Can’t go around it
Gotta go right thru it “

No matter how painful grief is, unfortunately there’s no way round it, we’ve got to go through it.

The best we can hope for, is friends and family who will journey with us and a God who cares.

Dear Dalriada Doctor

This blog post was written by a friend of mine called Oana. Her beautiful baby boy Georgie, died of leukaemia in the N.I. Children’s Hospice in July 2014.

I love to read Oana’s blog posts, but this one in particular touched my heart.

I work in the NHS and occasionally clients appear to “demand” more than I feel that I have to give – there is NEVER enough time, there is NEVER enough staff.

It’s good to be reminded that EVERYTHING we do, should be done with COMPASSION and RESPECT – because very often we don’t know the other person’s story and the burdens that they are carrying.

Mama's Haven

Dear Dalriada Doctor,

I am sorry I inconvenienced you today by phoning twice for a prescription I should have had the consideration to organise before the Easter holidays began.

Mea culpa.

But still, a bit of compassion and respect would have worked wonders, you know?

I get it.

You sounded bored and ready to go home.

Maybe the extra money you are getting for working on a public holiday does not make you happy.

I understand.

Maybe you had been working from 9 in the morning and had had enough of snotty toddlers and drunk youths. Or maybe you were on call last night and you went to see a dying child in the hospice close by your practice. Possible.

But you don’t know my story.

You didn’t scroll long enough through my medical file to see that in July last year, my life changed into a nightmare forever.

I…

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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.

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.

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:

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:

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

Facing the past

This morning I had an appointment at Occupational Health at my local hospital. My route back to the car park took me past the Haematology/Oncology Outpatients Department that Leah attended for the first half of 2013.

I had never been back there since Leah died. I don’t want to have any ‘no-go’ areas in my life, so I knew what I had to do – I went in and sat trembling for 10 minutes in the waiting area. I chose a seat facing where Leah had sat beside me on our first appointment there on Wednesday 23rd January 2013.

On Leah’s 15th birthday – Monday 31st December 2012 – I had taken her to our GP with what I thought were some relatively minor complaints. Thankfully the GP did a blood test.

My GP phoned me on Wednesday 2nd January to say that Leah’s blood was very abnormal and the haematologist was very concerned and asked me to bring Leah straight down to the Health Centre. I told her that we had a similar scare over a blood test when Leah was a toddler and it came to nothing, so I didn’t see any need for people to panic. My GP said that I was making her feel better. Leah had eight blood tests that day.

The GP phoned me the next day to say that there was no evidence of leukaemia in Leah’s blood but her blood test results were still very abnormal. She said that Leah would need weekly blood tests and the haematologist would be keeping a close eye on things.

A few weeks later I arrived home from work to the news that Leah had an “urgent” appointment at our local adult haematology/oncology clinic. I did my best to contain my anxiety and told myself that this was really only a routine precaution just to keep an eye on things in order to out rule anything serious.

As the two of us sat waiting together on Wednesday 23rd January, a nurse bounded towards us and cheerfully asked “Are you waiting for chemo?”

Well, I nearly lost my life.

Outwardly I just shook my head and she went away.

Inwardly I wanted to scream “How dare you think that my child will ever be sick enough to need chemotherapy? How dare you suggest that my beautiful girl will ever lose her lovely hair?”

The nurse had asked the question in the same vein as someone might ask if you wanted sugar in your tea.

I felt like I had unravelled inside. I did not wish to imagine a scenario whereby our child would EVER be receiving chemotherapy.

When we were finally called in for our appointment that day, I explained to our haematology nurse specialist what had happened and how traumatic it had been. She quietly replied “I will take care of that.”

The remainder of our appointment went very well as both our nurse and our consultant were very mindful of Leah’s emotional needs as well as her medical needs.

How naive we were back then though, clutching at straws, hoping and praying that these appointments and tests were unnecessary precautions.

It was the 19th April ’13 before Leah finally received her diagnosis and our naivety rapidly evaporated.

When I arose to leave Oncology/Haematology Outpatients this morning I knew that I had faced another difficult place and conquered another “first”.

I still need to arrange to go back another day and visit the treatment area, but the waiting area was enough for today.