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.

A Phone Call Can Change Everything

“My name is Dr ….. and I work in Belfast City Hospital. Has anyone given you the results of Leah’s bone marrow biopsy?”

It was Friday afternoon the 19th April 2013. I had been sitting on my bed, typing up an assignment for a work related course that I was doing, when the phone rang. It was a withheld number and I had hesitated before answering, not wanting to be interrupted by yet another stranger’s voice trying to sell me a product that I neither wanted nor needed.

My heart started beating faster and breathing became more difficult. This was a stranger’s voice alright, and although he wasn’t trying to “sell” me anything, the news that he was delivering, was something that I neither “wanted nor needed”.

He told me that Leah had a type of bone marrow failure called myelodysplasia and that she needed a bone marrow transplant.

I asked him if he was a paediatric haematologist and he said no, that he was an adult haematologist.

So I said “Why are you ringing me then, Leah already has an adult haematologist who we like very much and we don’t want another one.”

He replied that he was also a transplant coordinator. I then said that we had been told that if anything sinister was found in our daughter’s bone marrow biopsy that she would immediately be transferred to the care of the paediatric haematologist at the Children’s Hospital in the Royal who had done the biopsy. Our daughter was only fifteen years old.

This doctor replied that she wasn’t available at the moment ( I found out later that she was on honeymoon but that there was other paediatric haematologists).

He went on to say that he wanted our whole family in his consulting rooms in Belfast on Monday.

I asked “Is my daughter’s medical condition so serious & so urgent that we have to come and see you so soon?” And he replied “Yes – but you can come on Tuesday if you prefer?”

I then asked Leah if she would prefer to miss school on Monday or on Tuesday and she consulted her class timetable and said Tuesday, so Tuesday it was.

The reason Leah’s siblings were required was for “tissue typing” for a potential match for the bone marrow transplant.

Then he said “Miriam is only 9, she might be a bit young.” I told him that Miriam has very good understanding and she would most certainly want to be a part of anything that’s being done to help Leah.

I said “Please don’t make a difference in my children.” So he told me to bring all four of them.

I asked him where we had to go and he said “Well, you know where the Tower Block is at the City Hospital?” I was losing it at this stage and I said rather angrily through my tears “Why would I know where the Tower Block is? When in my entire life have I ever needed to know where your Tower Block is?”

He gave me more directions and the phone call ended.

Leah had been sitting beside me all this time, googling myelodysplasia and bone marrow transplant on her smart phone. That’s how she received her diagnosis.

I have to say, bad and all as that phone call may sound, it was wee buns compared to what we heard when we met the doctor face to face.

Nothing I read on the internet over the weekend was anywhere near as bad as what we were told when we got to that first appointment.

The phone call only told me that my daughter needed a bone marrow transplant and I knew very little about bone marrow transplants.

In that first appointment the doctor was so blunt about the implications of Leah’s diagnosis and consequently all the things that could go wrong before, during and after the transplant that we were left feeling that it was actually a miracle that Leah needed in order to survive! I write about this first appointment here.

It was a huge relief a week or so later when we got the phone call to say that Simon was a 10/10 bone marrow match as the Dr had said that if none of the siblings were a match then Leah would need a donor from the World Wide Registry.

He’d said that this could take up to 4 months and during the wait Leah’s disease could advance rapidly and her chances of survival could be greatly reduced.

A short while after this we also got word that Leah had been accepted by Bristol Children’s Hospital for transplant.

By then I knew that this was also good news as Bristol is a Centre of Excellence for treating rare blood diseases such as Leah’s and having her transplant there would greatly increase her chances of survival.

Gradually hope was being restored.

I have always loved the song “10,000 Reasons” by Matt Redman but it took on a special significance for me around the time of Leah’s diagnosis, especially the verse

“The sun comes up; it’s a new day dawning
It’s time to sing Your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes”

For me the challenge each day was to be still singing when evening came.

In those early weeks and months after Leah was diagnosed I found it almost impossible to pray or read my Bible – I wasn’t angry with God, I have never felt a need to ask “Why?”

I just felt so overwhelmed by all that was happening and so numb with shock that the only way in which I could engage with God was through listening to worship music and singing along.

I haven’t a note in my head and can’t sing in tune to save my life, but I used to get on my own in the house or in the car and put on CDs of worship music and sing to God with all of my heart. This helped me to connect with God and feel His presence with me.