My husband found our 2012 Family Planner in our old house and left it lying on the kitchen table in our new house today. Of course I immediately flicked to December. There it is – so innocent looking – Leah’s GP appointment. The one that changed our lives forever.
She’d had some health concerns for a couple of months late in 2012 but Leah wouldn’t take time off school to go to the GP. When I phoned and asked for an appointment with our favourite GP during the school holidays, they gave us one for the day of Leah’s 15th birthday – 31st January 2012.
Our GP phoned on Thursday morning 2nd January ’13 to say that Leah’s blood picture was very abnormal and that I needed to bring her to the Health Centre immediately. I told her that we’d had a somewhat similar scare with Leah’s blood results when Leah was a toddler. Full investigations had been done then and nothing untoward had been found so I really didn’t see the need for a major panic on this occasion either. Leah was in Limavady being treated to lunch by her cousin and I would bring her to the Health Centre in the early afternoon.
When I took Leah to the Health Centre that day she had a full medical examination, eight blood tests and a urine test for Bence Jones protein. The next day the GP phoned to say that there was no evidence of leukaemia but that Leah’s bloods were very abnormal and therefore monitoring and investigations would be ongoing. I wasn’t unduly anxious at this stage.
However in mid February Leah’s blood results were in my opinion particularly alarming. I had phoned in for them shortly before leaving work at 5pm. After hearing them I just couldn’t stop crying. The various consultant haematologists involved in Leah’s care had assured me that Leah’s blood results weren’t consistent with any nasty bone marrow disorders, but I didn’t believe them. I wrote in my diary in February ’13 that I thought that Leah had some rare form of bone marrow failure.
The journey home from work normally takes me 30min max – that evening it took me 2hrs – I kept having to stop the car to cry. I was distraught – I just knew that something wasn’t right. I pulled into the darkness of a rural filling station that was closed for the night and sat there. I phoned an elderly very Godly woman who was then the Clerk of Session in our church – that means she was our most senior church elder. I told her everything. She prayed over the phone with me the most beautiful inspiring prayer – by the time she was finished I was calm enough to face home. I certainly didn’t want Leah to think that I was worried about anything.
In March 2013 Leah was sent for a bone marrow biopsy, but by this stage I had calmed down again. I was very reassured by our consultant’s words and his upbeat demeanour: “We’re only doing this test to put everyone’s minds at rest. We are 95% sure that we won’t find anything sinister in Leah’s bone marrow.” We waited four weeks for the results and the longer we waited the more convinced I became that there was nothing wrong.
On Friday 19th April 2013 @ 4.20pm I answered a withheld call and heard a doctor I had never met utter the words “Has anyone given you the results of your daughter’s bone marrow biopsy?” followed by “Leah has myelodysplasia and she needs a bone marrow transplant.”
I felt so angry and so betrayed.
Yet I knew in my heart and soul that there had been no mistake – I knew that this was the only diagnosis that could possibly make sense of Leah’s constellation of symptoms. The minute that doctor spoke, a little voice inside my head said “He’s right you know.” From January to March other possible diagnosis had been offered to us and somehow they just didn’t sit right with me, but this time was different – I didn’t WANT to believe it but I knew it was true.
As the doctor continued talking, Leah sat beside me googling every word on her smartphone. By the time I got off the phone she probably knew more than me. However her peace and serenity and trust in God’s will for her life never seemed to waver.
Leah and I taught Children’s Church together on Sunday 21st April 2013, with the help of some of the other young people from our church. We taught the children the following Bible verse:
What is our true hope? It is the hope of sins forgiven and life everlasting.
We hope for other things too – like strength for the journey:
Here’s the most recent song that I play on repeat and derive comfort from:
“I Am Not Alone”
By Kari Jobe
When I walk through deep waters
I know that You will be with me
When I’m standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear
I am not alone
I am not alone
You will go before me
You will never leave me
In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
And I will not fear
You amaze me
You call me as Your own
You’re my strength
You’re my defender
You’re my refuge in the storm
Through these trials
You’ve always been faithful
You bring healing to my soul