This is what Leah posted on Facebook this day last year – a photo of Simon with the T-shirt that she bought him for Christmas.
It states MY BONE MARROW SAVED MY SISTER’S LIFE.
Simon’s bone marrow did save Leah’s life.
Leah died as a result of rare side effects of her treatment.
On the 1st July 2013 Leah had her second bone marrow biopsy. The initial results from Belfast City Hospital were very reassuring as they had shown no advance in Leah’s myelodysplasia.
The samples were then sent to Bristol for more detailed analysis and I asked no further questions. A lot of the more advanced haematological investigations can only be done in England or Dublin, not in N. Ireland.
One sunny day in September 2013, as I was calmly walking down the six flights of stairs in Bristol Children’s Hospital to go do some shopping, I bumped into our lovely consultant Dr C..
In the course of our conversation, he informed me that the bone marrow biopsy samples they had received in July, had shown some very worrying changes. In his words “there was abnormal cells revving up, ready to take off”. I was gobsmacked by this information.
In that moment I understood why, in a matter of four days in mid July, Leah had gone from being fifth on the waiting list for a bed in the transplant unit, to being first.
I was very glad that I hadn’t known about these results before now – there’s only so much bad news any one person can bear.
Leah’s transplant cured her myelodysplasia and monosomy 7. However she still had to live with the potential consequences of the GATA2 genetic defect that had caused her myelodysplasia and monosomy 7 in the first place. Leah understood this.
Leah was the first person in the UK to be diagnosed with her particular variant of a GATA2 genetic defect.
GATA2 genetic defects had only been discovered in September 2011 so they couldn’t tell us exactly how Leah would be affected long term.
Myelodysplasia has a high risk of relapse, so to prepare her body for transplant, Leah had a very toxic cocktail of chemotherapy that combined busulfan, mephalan and cyclophosphamide.
The decision to use this exact combination of chemotherapy drugs was not one that Leah’s consultant in Bristol made lightly. Dr C. spent weeks mulling this over and emailing colleagues around the world for a consensus of opinion regarding what would optimise Leah’s chances of survival long term.
Simon’s bone marrow, combined with the medical expertise in Bristol, provided Leah with the best possible opportunity for surviving her diagnosis. Without Simon’s bone marrow, we could have lost her much sooner.
Leah also received excellent medical care in Belfast City Hospital. However, sadly for our family, Leah was only on loan to us.
As Leah says in her Facebook post, she and Simon “never got on“. This is true – the sibling rivalry between them was intense.
Leah was 15 months older than Simon. As a “middle child” Leah often felt that she didn’t get enough attention.
Simon attended Speech Therapy from the ages of 2 – 8 years and I spent a lot of time working on his Speech Therapy homework.
As a little girl, Leah used to be quite jealous of the amount of undivided attention that I had to give Simon. This was probably a significant factor in the intense sibling rivalry that developed between them.
In April ’13 when Leah’s three siblings were being tested for compatibility of their bone marrow, it seemed unthinkable that Simon could be “the one“.
I even asked Leah jokingly on the day that they were getting tested “If Simon is found to be the only one compatible, would you really accept his bone marrow?” I’m not sure what her reply was.
A week later we got the phone-call to say it was Simon. Leah broke the news to him with the words “You and me are going to be blood brothers.” She smiled at him and he smiled back.
From that day forward, their relationship improved. To see the lovely card that Leah made Simon to thank him for donating his bone marrow click here.
In Bristol Leah used to tell me how much she missed all of her family, including Simon.
In Leah’s short life she realised what was truly important – peace with God and the love of family and friends.
My Journey: 