“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.
My Journey: 