Mummy They are Coming to Visit Us

By early February 2013 Leah was having weekly blood tests. She had also had her first outpatients appointment at the Sperrin Unit – our local adult Oncology/Haematology Department.

The staff who looked after us there were absolutely lovely. Our consultant there phoned the paediatric haematologist in the Royal Belfast Hospital for Sick Children to discuss Leah’s case.

Then he rang me to say that she had told him that Leah’s blood results weren’t consistent with any nasty bone marrow diseases. I didn’t believe her. I didn’t tell him this of course.

I recorded my fears in my diary and voiced them in my prayers. When I was on my own I cried a lot.

I reminded God that I had always hated the scary rides at the FunFair. I didn’t like adventure or risk taking – I didn’t even particularly like going away on holidays.

I just wanted to live a quiet life with my family, going on picnics, having Sunday lunch together and playing board games.

I also pointed out to God that a lot of the things that were happening to me were far removed from the blueprint that I had designed for my life. I was feeling way out of my depth.

However once Leah was diagnosed on the 19th April 2013 I knew this wasn’t something that I could get through in my own strength, I had to rely on God to get me through this.

One of the things I remember muttering under my breath at various times after Leah was diagnosed was “This is too much but HE is enough.”

So many times along the way since then He has provided for our needs by sending people to minister to us.

We received Leah’s diagnosis via a phone call on a Friday and we all had to go to the City Hospital in Belfast on the following Tuesday.

On the Sunday Leah said that some of her leaders from L.O.S.T. (Limavady Outreach and Service Team) wanted to visit us and wanted to know what time would suit? I replied “Leah, tell them no time suits.”

A while later Leah told me that one of the leaders had messaged her with a specific time and wanted to know if that would suit. I replied again “Leah, tell them that no time suits.”

Leah just looked at me and said “Mummy they are coming to visit us.”

Sure enough, a short while later, three people, two of whom I had never met before, arrived at our house.

They spent some time with Leah and my husband and me, talking about the devastating news that we had just received and the hospital appointment that we were facing that week. Then they prayed with us.

Before leaving, one of them said “Thank you for inviting us.”
I laughed and said “I didn’t invite you.”

Do you know something? Since receiving that awful phone call on the Friday, delivering Leah’s diagnosis, they were the first people who had come to our house to minister to us and pray with us. We really needed them and we really appreciated their visit.

It taught me something too. If I know that somebody is in bother and I feel an urge in my heart to visit that person, then I would rather follow the leading of my heart and take the risk of getting it wrong, than ignore the prompting of my heart and miss an opportunity to minister to somebody in great need.

God’s Provision

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.”
Philippians 4:19