We have this Treasure in Jars of Clay

Something Leah and I both really appreciated after she became ill, was for friends to share a Bible verse with us and to pray with us.

Thankfully we know so many amazing people here in N.Ireland, that we weren’t short of people who were willing to minister to us in this way.

Therefore during Leah’s stays in hospital in N.I. we usually received some kind of pastoral support on a daily basis and we loved this.

Bristol was another matter.

We were warned in advance that the only minister who would be allowed to visit us in the bone marrow transplant unit was the ‘official’ hospital chaplain, nobody else would be allowed in.

We were shocked to discover that the hospital chaplain only visited once a week.

Three weeks into our stay, her visits in the transplant unit were stopped, on the grounds of infection control.

I went through the official hospital complaints procedures, to insist on Leah’s rights to chaplaincy and I succeeded in getting the hospital chaplains redesignated as “essential visitors” so that her visits could be reinstated.

Sadly for us, a few weeks after this, our lovely chaplain left, to take up a new post elsewhere, so her visits stopped again.

Our minister from home managed to visit us in Bristol on one occasion, as did our church Family Worker, Leah and I appreciated this so very much.

The hospital staff in Bristol were amazed at this pastoral input from our church in Northern Ireland.

Notwithstanding all of this, by week three, Leah was seriously ill and we were seriously missing the pastoral support we were so used to receiving at home in N.I.

Leah and I were virtually in ‘lockdown’ in an isolation room on the bone marrow transplant unit.

We were fortunate that on the 31st July ’13 we were given an accommodation upgrade from a small pokey room that we hated (cubicle 4) to a beautiful, airy, spacious one, with ensuite facilities, that we really liked.

I couldn’t make phonecalls or ‘FaceTime’ as the noise irritated Leah when she was so unwell. The one thing I could do though was send and receive texts and emails.

I so very much appreciated the support that we received from so many people during Leah’s hospitalisations, by text, email, Facebook and private message.

This is one very helpful text that I received at just the right time:

Gradually it dawned on me that I had no choice but to be Leah’s ‘chaplain’ myself. This is a text I sent to someone else around that time:

As evangelical Christians in N.I. I think that we are too used to the easy life sometimes – we can choose from any & every type of church and denomination.

We could go to a Gospel meeting or Bible study every night of the week if we choose to.

Most major towns have well stocked Christian book shops.

Many of us go every year to conferences like New Horizon, Portstewart Convention, Focusfest, Mandate and many others.

When and how do we put all of this teaching into practice in our lives?

The Bible says in Hebrews 5:12 

‘You have been believers so long now that you ought to be teaching others. Instead, you need someone to teach you again the basic things about God’s word. You are like babies who need milk and cannot eat solid food.’ NLT

I had lots of devotional books with me that I read daily for my own benefit but at this early stage I wasn’t used to sharing any of this with Leah.

She had brought her own books with her but was now too ill to read them herself.

In early August Leah was so ill and so sedated that she could only listen and concentrate for very short periods of time.

I needed to pick out the most appropriate pieces from my own reading for sharing with Leah.

I was sort of nervous and self conscious at first, wondering if I was getting it right, but Leah was so appreciative.

Soon it just felt so “normal” and so nice, that every day, I read the Bible and some devotional readings to Leah and prayed with her. Leah was so “hungry” for the things of God, that even when I was having my own personal time with God, if she happened to be awake, she would say “read that out loud to me please Mummy.”

At times we as Christians can feel so very weak and inadequate, but yet God can still use us in the lives of others.

The Bible tells us in 2 Corinthians 4:7 

‘But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.’ NIV

Our very weakness and sense of inadequacy is what helps us to rely on God instead of doing things in our own strength.

I have learned many lessons on this journey, but if the truth be told, they aren’t lessons that I would ever have chosen to learn – or at least I wouldn’t have chosen to learn them in this way!

Meet Mr Wiggly

Early on Monday 1st July 2013 Leah was admitted to the Cancer Centre in Belfast City Hospital for a repeat bone marrow biopsy and to have a double lumen Hickman central line (Mr Wiggly) inserted.

It was Leah’s first admission to BCH and she had a spacious ensuite single room, with a folding camp bed for me. There was a steady stream of professionals in and out of her room and everyone was absolutely lovely. We were really well looked after.

 

By early evening Leah was well recovered from her anaesthetic but still had enough pain relief in her to keep her comfortable.

Leah loved her food and was feeling peckish, although she’d had her tea. By the time I had organised myself to go looking for a shop, the hospital shop was closed, so I walked down the Lisburn Road until I found a wee corner shop that was open.

I had left Leah happily “snap chatting” her friends on her new iPad. I brought her back an ice cream, a fizzy drink, a bar of chocolate and a muffin.

Leah was delighted and probably amazed that her mother would voluntarily buy her so much rubbishy food. However, as a nurse myself, I was well aware of what the near future held for Leah in terms of chemotherapy and side effects and a “clean diet”.

I was just glad to be able to do something “normal” like walk to a corner shop and buy her treats.

 

 

The next day the doctor told us that the initial tests on Leah’s bone marrow aspirate showed no significant increase in the number of abnormal cells. This was absolutely fantastic news as myelodysplasia has the potential to rapidly transform into an aggressive form of acute myeloid leukaemia.

He said that they would be sending samples from her bone marrow biopsy to Bristol for further testing. It was September before I discovered that these further tests in Bristol had showed sinister and worrying changes in Leah’s bone marrow.

At the time though, I didn’t ask and wasn’t told, for which I am grateful, sometimes there’s a limit to how much bad news anybody can cope with.

Leah was discharged from hospital late afternoon on the Tuesday, with a very sore neck.

On the Tuesday morning Leah met Muriel for the first time, she’s the Presbyterian deaconess who provides pastoral support at BCH. Leah and I loved her instantly. The pastoral support from the chaplaincy team at the City Hospital is excellent. When Leah was very ill in ICU in January ’14 we very much appreciated all the pastoral support that we received, Leah just loved to be prayed with.

For the next few days Leah found the whole area around the insertion site of her Hickman line very tender and painful and she needed lots of pain relief.

We had begun the path of the “new normal” – invasive procedures and medication and side effects and more medication to counteract the side effects and so on and so forth.

 

 

Our local community in Eglinton/Greysteel/Limavady held a fundraising evening for Leah on Saturday 29th June ’13. This was organised, almost single handedly, by a local woman called Margaret Moore who is blind.

It was very well supported by our neighbours, friends, relatives, local clergy and political representatives. Local businesses were generous in their donations. Leah was presented with a generous cheque. We appreciated not only the money, but also everybody’s friendship and kindness.

Shortly before this, our church, Kilfennan Presbyterian, had organised a “Prayer and Pudding Evening” in support of Leah. Over a hundred people, young and old, came to show their support for Leah.

There was an opportunity for private and group prayer. Many left financial gifts. There was also pen and paper to write a message or a prayer for Leah and post it in a box. Our church family worker then collated all of these into a beautiful book of encouragement for Leah to take to Bristol with her.

 

Our church printed prayer cards for Leah and 1,500 hard copies of these were distributed and many more were distributed online and printed off.

The clock was ticking. Now we just had to wait for Bristol Children’s Hospital to ring with a date for Leah’s admission for her bone marrow transplant.

The sooner, the better, we thought, so that we could get Leah’s treatment over and done with and all of our lives could return to normal.

Leah looked the picture of health, she had the most amazing doctors looking after her and thousands of people were praying for her. What could possibly go wrong? That’s where my thought processes were in July 2013.

I have since learned that not all people who are ill and dying actually look like they are ill and dying. I still think that Leah’s doctors are amazing – they did everything in their power to save her life.

Thousands of people prayed for Leah’s healing and I’m grateful to everyone who prayed and I don’t have answers or explanations, some things in life are a mystery.

I continue to believe in a God of love who had a perfect plan for Leah’s life and who has a perfect plan for mine too, although right now that plan feels anything but perfect.