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.

R.I.P. Caiden Tang

In the mid eighties I worked as a nurse in England. Part of that time was spent doing agency work and I worked in several different hospitals.

Everywhere I worked I met Irish nurses, so I could be forgiven for assuming that all English hospitals have a fair complement of Irish nurses.

What a disappointment when Leah and I got to Bristol Children’s Hospital and discovered NO Irish nurses. I asked a nurse on the Transplant Unit where all the Irish nurses were and he told me that he had worked in the hospital for 15 years and had met only one Irish nurse in all that time. I was gutted.

Leah and I were so far from home and family. I longed to hear a familiar accent and meet someone who understood our culture. Then I discovered that there was another child from N. Ireland on the unit – Caiden Tang. His mum Kathy and I instantly became friends – partners in crime more like!

Kathy and I were each in lockdown in isolation cubicles with our very sick children so we relied on snatched moments at the linen cupboard or in the changing rooms to have a quick conversation – and even a giggle. We both knew that a sense of humour was essential in helping us retain our sanity.

Caiden was five years old and was very unwell after his transplant. He was so weak that he had to learn to walk again. When I was entering or leaving the BMT Unit I used to wave into Caiden. His bed was full of teddy bears, his cubicle walls adorned with his absolutely favourite band – One Direction.

Caiden was first diagnosed at the age of five months so Kathy had been on this road way longer than me. Kathy’s tenacity, courage and dogged determination to make sure that her child always got the best possible medical and nursing care inspired me greatly. Her sense of humour through it all was like a tonic.

Occasionally, if Leah’s boyfriend Nic was visiting her and Caiden’s dad Raymond was with him, Kathy and I got an entire evening together – now that was a treat! We spoke the same language – Norn Irish English and we had a similar sense of humour – a little bit crazy!

Children weren’t allowed in to visit on the Transplant Unit but Caiden had been stuck in a tiny isolation room for months and was desperately missing his older sister Ellie. Ellie was also desperate to see Caiden.

Kathy understood the importance of Caiden’s emotional wellbeing and the impact this could have on his recovery. So one quiet Sunday in August, Ellie was surreptitiously smuggled into Caiden’s room and the joy on their faces was very evident in the photographs.

Kathy and Caiden left Bristol the week before us. They had to fly back to Belfast by air ambulance as Caiden was still very unwell.

Back home Kathy and I kept in regular contact but were unable to meet up at that stage due to caring for our children and the fact that we don’t live near each other.

When Leah was critically ill in ICU in Belfast City Hospital Kathy sent me heartfelt text messages of support – the kind that only another “oncology mum” can write.

Kathy also posted a beautifully worded prayer request for Leah on Caiden’s Facebook page. This post received over 1,000 ‘likes’ and it encouraged my heart so much to know that so many people were praying for us and wishing us well.

I was so pleased in May 2014 when Caiden started to look so much better and was even managing to attend school. His progress was amazing.

Then in September came the news that I didn’t want to hear – Caiden had developed pneumonitis. This was the post transplant lung complication that had taken my daughter’s life. I definitely didn’t want Kathy to experience the pain of grief and loss that I live with on a daily basis.

Caiden had been diagnosed with lymphoma at 5 months old. He had come through so much. He was such a wee fighter and constantly amazed the doctors with his ability to recover against the odds – surely this couldn’t be the end?

Just because pneumonitis took Leah’s life didn’t mean it had to take Caiden’s too – every child’s medical situation is different. I prayed for Caiden to be healed, as did so many others. As the scene in ICU in the Royal unfolded, I cried many tears for Kathy and her family.

Along with Kathy I clung to each tiny bit of hope, while at the same time realising with great sadness that her journey bore so many similarities to the 2.5 weeks that I had spent in ICU with my own daughter. I prayed for healing for Caiden, for strength and wisdom for Kathy and the family circle.

Then this morning, on my youngest daughter’s 11th birthday, came the news that shattered my already broken heart.

NOT a happy anniversary.

At 4.20pm on Friday 19th April 2013 I received a phone call from a Dr in Belfast City Hospital that we had never met & hitherto didn’t even know existed.

He rang to give us the results of the bone marrow biopsy that Leah had previously had done on the haematology ward of the Royal Belfast Hospital for Sick Children on Monday 25th March 2013.

The information imparted in this phone call ensured that our lives would NEVER be the same again.

The song “Hard Times” by Jamie Owens is a real golden oldie but the words are beautiful and have helped and encouraged me many times during my life –

1. Is the rain falling from the sky keeping you from singing? Is that tear falling from your eye, ‘cause the wind is stinging?
Refrain: Don’t you fret now, child, don’t you worry? The rain’s to help you grow so don’t try to hurry the storm along. The hard times make you strong.
2. Don’t you know, a seed could never grow, if there were no showers? Though the rain might bring a little pain, just think of all the flowers.
Bridge: I know how long a day can seem, when storm clouds hide His face; and if the rain dissolves your dream, just remember His amazing grace!
3. Don’t you know, the sun is always there, even when the rains fall? Don’t you know, the Son will always care, when He hears your voice call?

I never imagined that buying chocolate could be so distressing

On Monday 25th March ’13 Leah had her first bone marrow biopsy in the Royal Belfast Hospital for Sick Children. This subsequently resulted in her diagnosis of myelodysplasia with monosomy 7. Leah was accompanied to the Royal by my husband, his brother in law & his two sisters. I went to my work that day as I said that I would never set foot in the world of paediatric oncology/haematology unless I absolutely had to. I couldn’t bear the thought of seeing children with chemotherapy hair loss and nasogastric tubes.

One year later I’m in Tesco’s buying THREE Easter Eggs instead of the four that I’ve been buying since our youngest child was a toddler. I never imagined that something as simple as buying chocolate could precipitate so much emotion.