Whenever Leah was diagnosed in 2013 I desperately wanted to keep on working. I love my job and going to work is one of my coping strategies. However, it quickly became apparent that I needed to be at home with Leah. I write about the circumstances that led to me going off work here.
I did not at all begrudge doing this, but at the same time I also felt a distinct sense of loss.
When we returned from Bristol, towards the end of 2013, I had a conversation with my employer about returning to work. I wanted to believe that my daughter was going to be well enough for this to happen.
In early December 2013, I asked for and was given a 2014 work diary. I wanted this tangible symbol that I would soon be returning to work and would need this diary. I kept it in my bedroom where I could see it, as reassurance that all of our lives would soon start returning to normal.
Then, in January 2014, Leah died. I couldn’t imagine ever being capable of working again. Just getting out of bed and getting dressed was quite an achievement. My employers were very supportive and patient. Eventually, by mutual agreement, it was agreed that I would return to my part-time post on the 1st September 2014.
Due to someone being on Maternity Leave, I was offered the opportunity of initially returning to a post in a rural area, somewhere that is more convenient for me. I was very pleased, as I knew that this would make my transition back to work easier, for several reasons.
As September approached, I felt both excited and nervous. The weekend immediately prior to my returning to work was awful, just awful.
My grief intensified.
I imagined that if my employers could see the state that I was in, they wouldn’t even let me through the door, much less let me loose on the unsuspecting public.
Besides my overwhelming grief, I didn’t know if I could still enjoy my work.
I wondered if everything that had happened, had changed me so much, that I would no longer find any satisfaction in what I had once found so fulfilling.
Well, work has been so good for me. It’s the only part of my life that’s more or less the same today, as it was before Leah took ill.
Having something in my life that hasn’t changed, when it feels like everything else in my life has changed beyond recognition, is so reassuring.
To my amazement, I soon discovered that I still knew how to do my job.
Not only that, I still love it.
Many mornings I still cry on my way to work, but as soon as I get there, the busyness of my work commitments push my distress to the back of my mind.
In the first few months after returning to work, as soon as I stepped outside the Health Centre to come home, I used to feel the heavy cloak of my grief descend upon me once again. Sometimes on my way home, I would pull in somewhere and give way to my emotions, so as not to upset everyone when I arrived home.
One day at work, someone momentarily forgot my name and introduced me to a work colleague as “Leah’s Mummy“. I thought that was so beautiful – that acknowledgement that although my daughter is dead, I am still her Mummy. I loved that they weren’t afraid to say Leah’s name in case I would get upset or something. Leah’s school is close to where I was working and her story is well known in the local community.
My work colleagues didn’t make a big fuss of my grief and I wouldn’t have wanted them to. However, quietly, behind closed doors, words of support were uttered and hugs were given, whenever I most needed them. I really appreciated that, as some days I was just hanging by a thread.
Today was my last day working in that rural town, sadly for me.
On Monday 15th June I return to my permanent post in the City. To the office where I was working during the early months of Leah’s illness, until shortly after she received her diagnosis. To the desk where I received phone calls from haematology regarding Leah’s blood tests. To the carpark where I sat in my car and cried hysterically, because those blood results had convinced me that there really was something seriously wrong with my child.
I have a mixture of feelings.
I’m very aware that I’ve so much to be thankful for:
Thankful for paid employment.
Thankful for a job that I love.
Thankful that I was given the opportunity to ease my way back into working life via a slightly quieter rural location.
Thankful for supportive work colleagues, both where I’m leaving and where I’m returning to.
Thankful for relatively good health that has enabled me to not have even one day’s sickness absence since my return.
Thankful that the same God who has been by my side up to now, continues to walk with me and will give me strength for all that lies ahead.
I woke at 6.30am this morning with a migraine – nothing unusual there. I took my usual prescription medication and lay back in bed to wait for it to work.
However, instead of getting relief, I became sicker and sicker.
This was the day that we were getting solar panels installed, so the men were here doing that, as well as a joiner and an electrician. There was a lot of drilling. My husband attended to them.
I stumbled to the bathroom and found a receptacle to bring back to the bedroom into which I could vomit.
By midday I still couldn’t even sit up in bed without triggering an episode of vomiting bile. I was starting to feel very desperate.
Then I remembered the stash of medication still in Leah’s bedroom. I tried to remember if we still had any of the powerful anti sickness drugs she used to take when she was having chemotherapy.
Then I realised that even if we had, I wouldn’t be able to swallow them, as I was too sick.
Then I remembered the hyoscine patches – Leah used these in conjunction with several other anti sickness drugs to combat the severe side effects of intensive chemotherapy.
My eldest daughter was dispatched to search Leah’s medicine drawer and thankfully she soon returned with the patches.
I stuck one behind my ear and lay motionless for another hour. By 1.30pm I was able to take oral pain relief that took the edge off the pain and enabled me to sit up in bed at last.
Since Leah’s anniversary I have been concentrating on my positive memories of Leah. I’ve been trying to train my mind to remember the good times.
This morning has temporarily taken care of that.
Memories have flooded back of our beloved child who was so ill from the side effects of her treatment, that she was simultaneously on four anti sickness drugs – ondansetron, nozinan, metclopromide and hyoscine patches.
Still she vomited.
She even vomited up her nasogastric tube.
It was horrible.
It was a great relief in September ’13 when Leah’s gut healed and she was able to eat normally again.
Our relief was short lived though, as Leah developed a succession of side-effects from her treatment, each one a disappointment and each one greatly interfering with her quality of life.
On the 27th December ’13, as we travelled to a routine appointment at Belfast City Hospital, Leah vomited profusely in the car. That was the first clear sign that something was seriously wrong.
It was in fact, the beginning of the end.
Leah kept insisting that day that she wasn’t sick, that she had vomited because of drinking some water too fast.
I think Leah denied feeling sick for two reasons (her CT scan later that day showed that she was seriously ill):
A) Leah no longer knew what it felt like to be well.
B) She was desperate to go to the family party that was arranged for that night – her first since her transplant.
Leah continued to vomit frequently until she went on the ventilator on Thursday 2nd January. Then she was tube fed again and her gut seemed to settle down.
Life is rough sometimes.
However the only hand that we can play, is with the cards that we’ve been dealt.
Many times life doesn’t make sense and we don’t understand why things happen the way they do.
As a Christian I believe that somehow or other, the cards that I’ve been dealt were chosen for me by a loving God.
There are days that it doesn’t FEEL like it, but I believe that God has, does and will give me the strength to face every situation.
I believe that this world is not all there is.
Jim Reeves expresses it well in his song
“This World is Not my Home”
This world is not my home
I’m just a-passing through
My treasures are laid up
Somewhere beyond the blue.
The angels beckon me
From heaven’s open door
And I can’t feel at home
In this world anymore.
Oh Lord, you know
I have no friend like you
If heaven’s not my home
Then Lord what will I do.
We are part of a large close extended family and at Christmas we have some big family get togethers. This photo shows just my husband’s side of the family, but it has three more members since then – via marriage and birth.
We decided several years ago that it was far more important to spend time together than to lavish money on expensive gifts.
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My children always liked to have some little gift to give to aunties, uncles, cousins, grannies and granda’s. At one stage Leah used to hand make a book mark for each person. Then, about four years ago, we started making magnetic calendars on Vistaprint. Leah used to design these. We printed two or three dozen each December. I’ve no idea how we missed the “typo” in the 2011 one, where the second Scripture reference should be 1 Peter 5:7!
When I look back at the wording Leah chose for the 2013 calendar I am amazed – prophetic words indeed. This calendar would have been made around three weeks before Leah’s first trip to the GP and the blood test that changed everything.
The calendars seemed very expensive to print that year. In all the busyness and expense of Christmas I became very irritated and I crossly told Leah “This will be the last year that you’re making those calendars – they’ve got far too dear.” Sadly those words came to pass in a way that I could never have imagined.
My Facebook “Timehop” app tells me that this day three years ago I posted a link to a song called “One Last Christmas”
I have no recollection of seeing this video before or of posting this song 12 months before Leah became ill and 24 months before her final admission to hospital.
I’m really struggling emotionally this month, but I’m also thankful that Leah actually made it home from Bristol, that she had six weeks with us in her beautiful purpose built bedroom, that she got to spend time with some of her family and friends and that we did indeed have “one last Christmas”!
“It’s the news that no one hopes for Every parent’s greatest fear Finding out the child you love so much Might not make it through the year
Now the thought of spending Christmas Without him just feels wrong They’ve been praying for a miracle Now they’re praying he can just hold on
For one last Christmas, one last time One last season when all the world is right One more telling of the story One more verse of silent night They’d give anything so he could have One last Christmas”
On Sunday 27th October Leah and I finally escaped from Bristol and returned to Ireland. We had spent 14 weeks in Bristol, much longer than the 6-8 weeks that we had originally anticipated.
Horace flew over on the Friday night in order to accompany us on the flight home, as Leah was weak and unwell.
The seasons had changed – we had left Ireland during an amazing heatwave and we were now returning in the frosty darkness of winter.
We had changed too, we had arrived in Bristol on a warm July Sunday, full of hope and optimism, with just a little bit of fear.
However, now our hearts – and Leah’s body – were battered and worn.
Years ago I used to watch every episode of “Children’s Hospital” on TV but eventually I had to stop, as it all became too much for me emotionally.
Living on the wards of Bristol Children’s Hospital with Leah, felt at times like being stuck in a never ending episode of “Children’s Hospital“, from which there was no escape.
So many sick children.
So many sad stories.
So many broken hearted parents putting on brave faces.
Our final fortnight in Bristol proved to be a nail biting finish.
Leah’s blood platelets were consistently dropping and her consultant was worried that she was relapsing and would need a second bone marrow transplant.
Thankfully a bone marrow biopsy on the 16th October revealed healthy bone marrow.
The doctor said that she might need a CD34 selection top up at some later stage, if her blood counts didn’t come up, but we didn’t need to worry about that yet.
We were told that at long last we could plan our return flights home.
Then, on Monday 21st October, just as we were booking our flights home, Leah developed a “line related” blood clot and was once again readmitted to Cubicle 4, the hospital room that we so disliked, on the Bone Marrow Transplant Unit.
The prominent veins were the clue that something was amiss.
Leah required a blood platelet transfusion at this stage as her platelets had dropped to 47 and a normal platelet count is above 150.
The doctor on duty could offer no reassurance that we would still be going home the following Sunday as planned.
I remember feeling stunned and numb and thinking “This just can’t be happening.”
The staff on the Transplant Unit seemed as shocked and upset about our circumstances as we were.
Webster, one of the healthcare assistants, made me my favourite cheese on toast, as I hadn’t eaten all day. I don’t know what his secret ingredient is, but he makes the most amazing cheese on toast.
Leah browsed their menu and ordered something more substantial, but cheese on toast is one of my comfort foods.
The night nurse on duty wouldn’t hear tell of me walking to the Clic Sargent House in the dark to get our bags for staying overnight. She ordered a taxi to take me there and back.
I hugged Leah tight then reluctantly left her alone in her isolation room, while I once more went and packed our bags for a hospital stay.
The next day it was decided that Leah could be discharged from hospital on daily anticoagulant injections.
We could fly home at the weekend but we had to attend Oncology Day Beds every day for the rest of that week for monitoring of Leah’s medical condition.
It was a busy week.
Two days before we were due to fly, Leah developed chest pain.
She had to have an ECG, a chest X-ray and an emergency CT scan.
Everything hung in the balance.
Eventually Leah got clearance to fly home – such relief.
Leah had baked fifteens for the Doctors and staff in Oncology Day Beds to say goodbye and thank you.
We got lots of warm hugs from the members of the team that we had grown especially close to.
I can tell you that two people were never as happy to see a “Welcome to Belfast” sign as Leah and I were on Sunday afternoon 27th October 2013.
I couldn’t stop crying – my emotions were all over the place!
Our eldest daughter was at the airport to welcome us.
Although I was desperate to get home and see everybody, I had some very mixed emotions.
I was acutely aware of just how unwell my daughter was.
I was excited about returning to Ireland and being reunited with friends and family, but I was nervous about leaving the care of Bristol Children’s Hospital.
In Bristol we were surrounded by families who were walking a similar journey to us and we could support one another.
Back home Leah was cared for in adult services so I had no contact whatsoever with other parents or families and therefore no informal means of peer support.
I couldn’t remember what normality felt like, nothing in life seemed familiar anymore, I was scared.
Leah couldn’t return to the house that we used to live in due to dampness and mould. Our new house wasn’t ready yet.
Leah’s Auntie E lives in Belfast and very kindly invited Leah and I to stay with her for a fortnight.
This seemed like a very good idea as it also meant that we were adjacent to Belfast City Hospital, where Leah’s post transplant recovery would be monitored.
Once we returned to our own home we would be 70 miles from the hospital.
Leah’s diagnosis of myelodysplasia with monosomy 7 was very rare.
Her particular variant of a Gata2 gene mutation was even rarer.
Bristol Children’s Hospital was where all of this was well understood.
I had developed such trust and respect for the staff in Bristol, I didn’t know if I could ever learn to trust the staff of another hospital in the same way.
Leah was being cared for in Children’s Services in Bristol.
Back home in N. Ireland she received her care in Adult’s Services and that felt very different.
We had our first return appointment at the Bridgewater Suite at Belfast City Hospital on Tuesday 29th October 2013.
Leah and I were both tearful and emotionally fragile.
We were used to the small intimate environment of the Paediatric Oncology Day Beds in Bristol, where everyone knew us and decorated cardboard cutouts of Gromit hung from the ceiling.
Where the smiling Play Therapist was on hand with interesting activities to distract and everything seemed geared to meet the needs of children, young people and their parents.
Bridgewater Suite in Belfast City Hospital on a Tuesday morning is crazy – there are patients waiting everywhere – it’s like a cattle mart.
Although the waiting area is extensive, it’s still not big enough, so some patients even sat on the window sills. We felt overwhelmed.
A single room was quickly found for us thankfully, as Leah wasn’t supposed to be mixing with crowds, due to her weakened immunity.
They couldn’t change the physical environment, but they did everything that they could do to support Leah emotionally and to make things better for both her and me.
Muriel, a Presbyterian deaconess who provides chaplaincy at the hospital, changed her day off that week, so as to be there to meet us and pray with us. We appreciated that so very much.
Our consultant was really nice and very caring, as was the lovely nurse who accompanied him.
New relationships were formed and trust began to be established.
For the remainder of Leah’s short life, every Friday was spent at the Bridgewater Suite at Belfast City Hospital, where she received excellent care and attention.
During the two weeks that we stayed with Auntie E some fun times were had too.
We sat around her kitchen table and played Cluedo and Uno.
I kept winning at Cluedo and they accused me of cheating!
I wasn’t cheating – the two of them were busy chatting while I was very focussed and concentrating on the game!
Leah was very close to her Auntie E and loved her company.
We usually got a taxi back to Auntie E’s house after our hospital appointments, this cost approximately £10.
On one of these occasions, when we arrived at our destination, the taxi driver switched off the meter and refused to accepted any money.
Leah’s chemotherapy hair loss had given him a clue to her illness and he had learned a bit more of her story as we chatted along the way.
To be honest, the kindness shown to us by this total stranger cheered and encouraged our hearts way over and above the monetary value of the £10 that we saved, although we appreciated that too.
At weekends Leah’s boyfriend Nic travelled up by train to visit her.
When he was leaving we always walked with him to the train station, then Leah and I walked back together.
Leah was weak and couldn’t walk far.
The shortest way back was via an unlit, lonely, isolated path.
My mobile phone was fairly new and I didn’t realise that there was a torch on it.
Leah and I used to walk this path together, arms linked, in total darkness, surrounded by bushes on either side.
I used to be terrified, but tried not to show it.
I silently wondered if anyone would hear us if we’d screamed.
Sometimes the bushes would rustle and I would startle and Leah would say “Mummy don’t you tense up, because you’re making me scared.”
So then I would have to consciously relax my body, and control my breathing, to keep Leah from sensing my fear.
I was always so relieved when we reached the end of this lonely path and I could see the welcoming street lights.
In many ways our walk on this path was a metaphor for this whole illness journey that Leah and I walked so closely together.
I had to rely on God for the strength that enabled me to control my fears and emotions. It was vitally important that I remained calm and unruffled on the outside, so that my daughter didn’t sense the fears that I carried deep down inside, regarding her illness and its implications.
My Journey: 