Leah’s first blood test was on the 31st December 2012 and she did not receive a final diagnosis until the 19th April 2013.
Paediatric myelodysplasia with monosomy 7 is quite rare, occurring in approximately two per million children and it can be quite difficult to diagnose.
During the time that Leah was having investigations we were told that our approach was to be one of “watchful normalisation” i.e. we were to keep Leah’s life as normal as possible but at the first sign of an ache, pain, cough or cold we were to phone the 24hr helpline at the Sperrin Oncology/Haematology Unit at our local Altnagelvin Hospital immediatly.
If Leah needed to travel overnight beyond the jurisdiction of our local hospital I was to send written instructions with her to ensure that whatever hospital she was taken to would immediately phone the Sperrin Unit for advice on her care.
Leah was scheduled to go on an activity weekend with the Girl’s Brigade to the Share Outdoor Activity and Adventure Centre in Lisnaskea in Co. Fermanagh exactly seven days after she received her diagnosis. I checked with our local hospital consultant what exactly I needed to put in the letter that would go with her. He expressed some concern about her going. I said that she had been looking forward to it for weeks, especially since she had to drop out of her silver Duke of Edinburgh hike because of her severe neutropenia. I reminded him of his stated policy of “watchful normalisation“. So then he said “well I suppose there would be no harm in her going and watching the other girls taking part.”
I remember that as the bus pulled away from the church on Friday 26th April another parent said to me “Don’t be worrying, Leah’s in good hands.” and I replied “I’m not capable of worrying because I’m still in shock from her diagnosis – I can’t even think straight.”
Leah came home from the GB weekend on Sunday and happily informed me that she had PARTICIPATED IN EVERY ACTIVITY. I nearly had to be worked with.
As the days and weeks went by and I realised how weak Leah’s immune system really was and how risky it had been for her to go on that weekend and take part in every activity, especially when she was geographically so far away from a specialist haematology/oncology unit if she had become unwell, I felt terrible for having exposed her to such danger.
Now however I thank God that Leah got to go and have fun and be with some very special people at a time when she was dealing with the worst possible news she would ever receive. Leah had been in the Girl’s Brigade since she was three years old and it was such a big part of her life. I know that the GB weekend in the Share Centre meant so much to her. I look back now at so many things that happened along the way and marvel at how, in the midst of Leah’s illness and our distress, God was always providing what was needed.
Obviously we would have much preferred if Leah had been healed, but that choice wasn’t ours to make. As Rev Craig said at Leah’s funeral, some things in life will always remain a mystery. However, the sense of timing and of God’s provision in Leah’s short life continues to amaze me.
“And my God shall supply all your need according to His riches in glory by Christ Jesus.”