Blood Brothers

Blood Brothers

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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.

The Hiding Place

The Hiding Place

Next week will be the six month anniversary of Leah’s death and I don’t want it to be. Sometimes I just want to take a rubber and erase the past 18 months of my life.
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I forgot to look at one of my Bible reading notes yesterday so I read it today instead and this is what I read: –

Extraordinarily it is often the people who have gone through the greatest suffering who have the strongest faith. They testify to the presence of God with them, strengthening and comforting them in the midst of their pain. Betsie ten Boom, as she lay dying in Ravensbruck concentration camp, turned to her sister Corrie and said: ‘We must tell them that there is no pit so deep that He is not deeper still. They will listen to us, Corrie, because we have been here.’

Leah was admitted to an isolation room on the bone marrow transplant unit in Bristol Children’s Hospital on the 21st July 2013. Most of the time there it was just her and me. There was no Irish nurses and the staff were mostly too busy to talk to us anyway. Within hours of arrival Leah became life threateningly ill. As soon as her condition stabilised her chemotherapy started – bag after bag of poison. 1 x Mephalan, 2 Cyclophosphamide and 8 x Busulfan.
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As the chemotherapy took it’s toll on Leah’s body she became sicker and sicker. She kept vomiting, she had frequent diarrhoea and her mouth was so ulcerated that she couldn’t speak, eat or swallow her own saliva. The nurses and doctors knew how to handle this so Leah was connected to a morphine pump. A doctor from the pain team visited her twice a day to ensure that she was getting enough pain relief.

Leah was on so much intravenous medication that there was barely enough hours in the day to get it all into her system. A nasogastric tube had to be put down her nose into her stomach as there are some medications that can’t be given intravenously and Leah’s mouth and throat were too painful for her to take anything orally.

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Leah was on four different medications to control the vomiting, including nozinan and ondansetron, which are quite strong, but she still had some episodes of vomiting. Sometimes she vomited up her nasogastric tube, then a new one had to be put back down again. Sometimes when Leah vomited, it triggered a nosebleed which lasted approximately 10-15 minutes – this really scared me.

At this stage Leah had no functional bone marrow so her body could not manufacture blood products and she was totally reliant on blood transfusions. Knowing this, I found it very frightening to see her blood just dripping out of her body, although of course I hid my fear and anxiety from Leah.

On one particularly stressful day of vomiting and nose bleeds I was too scared to leave Leah’s room long enough to get lunch or tea and I had to make do with cereal bars that I always kept for emergencies. The transplant unit provided a simple breakfast for parents/carers so I was very glad that I’d had my coco pops that morning!
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In the midst of it all we watched a DVD that we had brought with us – The Hiding Place by Corrie Ten Boom – an amazing true story.

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Leah and I were inspired and encouraged on our journey by hearing in the film the very words that I read today.

There is no pit so deep that He is not deeper still.

By God’s strength I will go on.

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She gave it to me tied up with ribbon

She gave it to me tied up with ribbon

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The usual advice for someone with long hair going for chemo is to get their hair restyled with a nice short hair cut before their hospital admission.

However Leah had done her online research and she had a different plan – she would go to Bristol with her hair still long.

Once her hair started to fall out then she planned to get her plait cut off and donate it to the  Little Princess Trust

Before Leah could have her bone marrow transplant, her existing diseased bone marrow needed to be killed off by a toxic cocktail of chemotherapy.

When the nurses are handling these bags of chemo they wear aprons, goggles and arm protectors, because chemotherapy is so poisonous.

In the space of two weeks Leah had 8 doses of Busulfan, 2 of mephalan and 2 of cyclophosphamide.

The side effects were very nasty.

On the 15th day Leah started to lose her hair. However her boyfriend Nic was due to arrive late that night for the first time since Leah’s admission to the Transplant Unit.

Leah wanted him to see her with hair first so that the shock of seeing her so sick would not be too great for him.

The next day I cut off Leah’s plait and shaved her head while Nic filmed us using my iPad.

We chatted and laughed throughout.

I asked Leah if I could keep a lock of her shaved hair but she instructed  me to put it all in the bin.

I was upset about this but I didn’t show it or argue with her, as I always tried to respect her wishes.

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The next day I went to Bristol Post Office to send Leah’s hair donation to the Little Princess Trust by recorded mail.

The Counter Assistant asked me what was in the envelope – she said that it was their new policy to ask.

I started crying and explained as best I could through my sobs. She was really nice to me.

Leah eventually found out months later, how upset I was that she hadn’t let me keep a lock of her hair.

When we returned from Bristol Leah found one of her hairbrushes that still had her hair in it and put this little bit of hair in a small box.

She gave it to me tied up with ribbon.

 

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