On Friday 14th June 2013 Horace, Leah, Simon, Miriam & I went to Bristol Children’s Hospital for Leah’s first outpatient appointment there.
I faced this appointment with a mixture of fear and excitement – fear of the unknown, but excitement because this was the Centre of Excellence that had the potential to save Leah’s life. I knew that the day long appointment in Bristol would involve Leah & Simon having various tests & I imagined that the rest of the time would be spent meeting staff and having a tour of the facilities.
What I didn’t know was that we would spend approximately three hours with Dr C – the most amazing, most knowledgeable, most respectful & most compassionate hospital consultant I have ever met.
However, during this time he told us many things that we didn’t want to hear – about Leah’s diagnosis and prognosis. He gave us detailed information about the treatment Leah would receive and the short, medium and long term risks of this treatment & he talked about the possible genetics of her situation, which sounded scary.
Meantime Miriam was elsewhere playing happily with kids with bald heads and some with nasogastric tubes, with the support of a lovely Play Therapist.
I had asked for Simon to be excused from the discussion but was told that the law states that the marrow donor has to hear all the gorey details regarding the patients prognosis/treatment so that if the bone marrow recipient dies the donor will know that it was their illness/treatment that killed them & it was nothing to do with the marrow donation.
My husband took weak listening to all we were told and had to lie down while Dr C went and got refreshments for everyone.
My head was reeling.
Leah remained calm & cheerful throughout.
We had a short break for lunch & went to McDonalds.
The kids ate well – I felt ill & overwhelmed.
That evening at the airport I had an overwhelming urge to vomit – I wanted to purge my body of everything we had been told about this disease process that had taken residence in my beautiful daughter’s body and all that this implied for her future.
While waiting for our flight to be called I went off on my own for a short time & stuck earphones in my ears & put the song “Blessings” by Laura Story on continuos repeat.
She wrote this song after her husband was diagnosed with a brain tumour. It is a song that brought both Leah & I great comfort in times of stress & confusion:
Thankfully the next day was “FocusFest” in Belfast and although I was very tired from two nights of very little sleep, it was so good to be there amongst hundreds of women worshipping & praising God & my soul was gradually restored.
My Journey: 