What’s That in Your Hand?

I’m so excited.

I recently submitted a guest post to an American Christian website called My Big Jesus.

Today they emailed me to say that my post on their site has had 700 views and they would like me to become one of their resident writers. This means having my pic and my bio on their website and submitting two articles per month.

I don’t get paid for this – it’s voluntary.

I get to retell the story of Leah and how God has carried us through, to a wider audience.

However, I’m not only excited, I’m also terrified.

I’ve looked at the bios of their other regular contributors on this site – they are mostly professional writers and pastors and pastors’ wives. They sound so important and they make their lives sound so exciting.

I feel so ordinary and unqualified.

A few weeks ago I went to Causeway Coast Vineyard in Coleraine with a friend.

Mike Pilavachi was speaking. I’d never heard of him before but he is a co-founder of Soul Survivor and apparently he’s well known.

The theme of his message was “What’s that in your hand?”

He based his message on the miracle of the feeding of the five thousand in the gospel of John 6:5-13

A large crowd of people had come to hear Jesus speak. After a while, the people were hungry, but there was nothing with which to feed them.

John 6:9 (NKJV)

“There is a lad here who has five barley loaves and two small fish, but what are they among so many?”

The boy handed over his lunch to Jesus, who gave thanks, then multiplied it and used it to feed the huge crowd.

Mike Pilavachi’s point, was that what we have to offer to God may not seem like much, but when we place it in God’s hands, He can multiply it and use it to bring blessing to others.

This weekend marks two years since we received Leah’s awful diagnosis.

I’ve felt very down this past week and I’ve cried a lot.

To answer Mike Pilavachi’s question, what have I got in my hand?

I’ve got a story to tell, a story of a fifteen year old girl who responded to her diagnosis with the words “God has a plan for my life” and “we’ve got to see the bigger picture.”

A young girl who faced death without fear, because she knew that Jesus had died on the cross for her sins and that she was heading into the outstretched arms of a loving Heavenly Father.

What if telling Leah’s story to a wider audience is part of that bigger picture?

Telling people that there is no pit so deep but that God’s love is deeper still!

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?

Leah loved Girl’s Brigade

My husband and I presented a cup tonight in Leah’s memory at Kilfennan Girl’s Brigade Display.

It has been designated as a “friendship cup” to be awarded to the girl each year who makes the most effort to befriend others just like Leah did.

I was over the moon when the cup was awarded to Leah Rossborough, who had already greeted us with a warm smile on our arrival.

Our Leah joined the Girl’s Brigade when she was three years old and rarely missed a night since. She loved G.B. and it played an important part in her life

G.B. helped to mould Leah’s character and her faith. Leah received her diagnosis six days before last years GB display so she took part last year knowing that she was very ill and needed a bone marrow transplant.

I thank God for the Godly influence of the GB captain Mrs Roberta Smith, the officers and helpers and for all the love and support they have shown us since Leah became ill and subsequently died.

I knew that treatment would drastically alter her appearance

Within days of Leah’s diagnosis I knew that I wanted professional photos.

I wasn’t really expecting Leah to die but I knew that treatment would drastically alter her appearance.

Chemotherapy causes hair loss and high dose steroids cause hamster cheeks.

I explained to Leah that I wanted some photos of her as she was then, so that she could look at these when she was going through her treatment and use them to remind herself of what she normally looked like and would look like again.

As a family we never did professional photos so I didn’t want to go to some formal studio, I wanted Leah to feel like she was visiting a friend who happened to have a camera.

I knew just the person, she works from home, and she has a very cute baby – Alison Hill

When I talked to Leah about this she said that she didn’t want to go on her own, she wanted her boyfriend Nic to go with her.

So Alison took some photos of her and Nic together and some of each of them on their own.

This was good too as it meant that Leah had some beautiful photos of her and Nic together, to stick on her wall when she was in hospital.

Leah and Nic had a brilliant evening’s fun at Alison’s house while Nic’s Mum and I had a lovely walk in nearby Muff Glen.

I now have 32 absolutely gorgeous professional photos of Leah.

Last week Alison sent me a gift of a 6″x4″ copy of every photo from the photo-shoot which I have put in a little album.

She also sent me two CD ROMs of all the photos – one for me and one for Nic.

These photos are so beautiful and so precious to me now.

A Phone Call Can Change Everything

“My name is Dr ….. and I work in Belfast City Hospital. Has anyone given you the results of Leah’s bone marrow biopsy?”

It was Friday afternoon the 19th April 2013. I had been sitting on my bed, typing up an assignment for a work related course that I was doing, when the phone rang. It was a withheld number and I had hesitated before answering, not wanting to be interrupted by yet another stranger’s voice trying to sell me a product that I neither wanted nor needed.

My heart started beating faster and breathing became more difficult. This was a stranger’s voice alright, and although he wasn’t trying to “sell” me anything, the news that he was delivering, was something that I neither “wanted nor needed”.

He told me that Leah had a type of bone marrow failure called myelodysplasia and that she needed a bone marrow transplant.

I asked him if he was a paediatric haematologist and he said no, that he was an adult haematologist.

So I said “Why are you ringing me then, Leah already has an adult haematologist who we like very much and we don’t want another one.”

He replied that he was also a transplant coordinator. I then said that we had been told that if anything sinister was found in our daughter’s bone marrow biopsy that she would immediately be transferred to the care of the paediatric haematologist at the Children’s Hospital in the Royal who had done the biopsy. Our daughter was only fifteen years old.

This doctor replied that she wasn’t available at the moment ( I found out later that she was on honeymoon but that there was other paediatric haematologists).

He went on to say that he wanted our whole family in his consulting rooms in Belfast on Monday.

I asked “Is my daughter’s medical condition so serious & so urgent that we have to come and see you so soon?” And he replied “Yes – but you can come on Tuesday if you prefer?”

I then asked Leah if she would prefer to miss school on Monday or on Tuesday and she consulted her class timetable and said Tuesday, so Tuesday it was.

The reason Leah’s siblings were required was for “tissue typing” for a potential match for the bone marrow transplant.

Then he said “Miriam is only 9, she might be a bit young.” I told him that Miriam has very good understanding and she would most certainly want to be a part of anything that’s being done to help Leah.

I said “Please don’t make a difference in my children.” So he told me to bring all four of them.

I asked him where we had to go and he said “Well, you know where the Tower Block is at the City Hospital?” I was losing it at this stage and I said rather angrily through my tears “Why would I know where the Tower Block is? When in my entire life have I ever needed to know where your Tower Block is?”

He gave me more directions and the phone call ended.

Leah had been sitting beside me all this time, googling myelodysplasia and bone marrow transplant on her smart phone. That’s how she received her diagnosis.

I have to say, bad and all as that phone call may sound, it was wee buns compared to what we heard when we met the doctor face to face.

Nothing I read on the internet over the weekend was anywhere near as bad as what we were told when we got to that first appointment.

The phone call only told me that my daughter needed a bone marrow transplant and I knew very little about bone marrow transplants.

In that first appointment the doctor was so blunt about the implications of Leah’s diagnosis and consequently all the things that could go wrong before, during and after the transplant that we were left feeling that it was actually a miracle that Leah needed in order to survive! I write about this first appointment here.

It was a huge relief a week or so later when we got the phone call to say that Simon was a 10/10 bone marrow match as the Dr had said that if none of the siblings were a match then Leah would need a donor from the World Wide Registry.

He’d said that this could take up to 4 months and during the wait Leah’s disease could advance rapidly and her chances of survival could be greatly reduced.

A short while after this we also got word that Leah had been accepted by Bristol Children’s Hospital for transplant.

By then I knew that this was also good news as Bristol is a Centre of Excellence for treating rare blood diseases such as Leah’s and having her transplant there would greatly increase her chances of survival.

Gradually hope was being restored.

I have always loved the song “10,000 Reasons” by Matt Redman but it took on a special significance for me around the time of Leah’s diagnosis, especially the verse

“The sun comes up; it’s a new day dawning
It’s time to sing Your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes”

For me the challenge each day was to be still singing when evening came.

In those early weeks and months after Leah was diagnosed I found it almost impossible to pray or read my Bible – I wasn’t angry with God, I have never felt a need to ask “Why?”

I just felt so overwhelmed by all that was happening and so numb with shock that the only way in which I could engage with God was through listening to worship music and singing along.

I haven’t a note in my head and can’t sing in tune to save my life, but I used to get on my own in the house or in the car and put on CDs of worship music and sing to God with all of my heart. This helped me to connect with God and feel His presence with me.

The Many Faces of the NHS

When Leah was diagnosed and we had our first appointment at Belfast City Hospital, we received no emotional support, no information re Clic Sargent or Macmillan, offered no access to pastoral care or counselling, no leaflets, no helplines, nothing, zero, zilch, not even a cup of cold water. We were told the worst possible information about our child and her prognosis, so that we feared for her very life and were then sent home with an “I’ll be in touch” from the consultant.

I continued going to my work (in the NHS) in a vain attempt to keep things as normal as possible.

One day, about a week after this appointment, I was driving to work when my car broke down in the flow of traffic and I broke down too.

A stranger parked his car some distance ahead and started walking back towards me. My car was broken down in the middle of the road & I was sat behind the wheel sobbing hysterically, with cars backing up behind me.

I remember watching him through my tears, thinking “I don’t know what you are going to do with me when you get here because I have completely lost it.”

 

I continued trying to start the car and mercifully for both me and the kind stranger, the car started and off I went.

I subsequently pulled in to a lay-by and phoned the Haematology Nurse Specialist at Altnagelvin, our local hospital, where Leah had been having haematological investigations for three months prior to her diagnosis.

I asked if I could come and see Leah’s consultant there to discuss our non existent psychological care post diagnosis. She checked with him and gave me an appointment for 2pm that afternoon.

I continued on to my work and did three home visits with the car – and me – breaking down at frequent intervals in between.

Eventually at midday the car completely gave up on a busy dual carriageway and I managed to steer it into a nearby car park.

I was by now in a very distressed state.

A work colleague came and sat with me until my husband and the roadside recovery truck arrived.

The roadside recovery man started asking me questions about what was wrong with the car.

At this stage I was really past it and I just looked at him with swollen eyes and said “I don’t know what’s wrong with this car…..all I know is that my child has cancer.” and then I walked away from him.

Horace, my husband, hadn’t witnessed this conversation, but the poor roadside recovery man must have been very upset because I remember Horace asking me afterwards in a very worried tone of voice “What did you tell that man?”

Horace left with the Roadside Recovery man. I took Horace’s car up to the hospital for my appointment.

I then spent two hours with the nicest, kindest, most understanding nurse and doctor you could ever wish to meet.

They listened to everything I had to say. The doctor himself insisted on being the one who brought us refreshments.

They referred our family to various support agencies. The doctor reframed some of the things the other consultant had told us in a way that was easier to bear.

I didn’t want false hope – I always prefer the truth – but there can be ways of telling the truth that are less painful for people to hear.

I felt heard, understood, cared for.

I could see that there was a way forward.

I went out to the car park and Horace’s car wouldn’t start……..and we had no roadside recovery on this car. I started crying again.

My mobile phone was almost dead.

A friend from church (who works in the NHS) appeared and phoned an old friend of ours who works at cars. Another work colleague came and sat with me till I got sorted out.

Inwardly I prayed “Lord, if you will just let me get safely home this day I promise I won’t even attempt to leave the house tomorrow – I understand now that I’m not fit to go to my work!”

Subsequent to this while at one of our “egg harvest” appointments at the Royal Hospital in Belfast, Leah suggested that we visit the Macmillan kiosk there. It was their advisor who informed us that Belfast City Hospital has a Clic Sargent Social Worker and a Teenage and Young Adult (TYA) Oncology Clinical Nurse Specialist. The Macmillan adviser was really lovely and she put us in touch with them.

We got brilliant support in Belfast City Hospital from then on. I also sought and was given firm assurance that systems were being put in place to ensure that no family of a young person receiving a cancer diagnosis would ever again be left bereft of support as we had been.

Incidentally, Leah always said that she liked our consultant in Belfast and she always spoke well of him.

I grew to like him. He obviously got it wrong that first day as far as our psychological care was concerned, but he turned out to be a very kind, caring, respectful, knowledgeable, hardworking and conscientious doctor.

Once I got to know him I became very fond of him.

What if Your healing comes through tears?

Bristol Children’s Hospital

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.

Our God is a Great Big God

Leah was more sedated this morning, her oxygen requirements were broadly similar to what they have been, kidney function slightly less good & chest X-Ray no change so today’s nice doctor ( one of my favourite) has decided to go ahead with a bronchoscopy and lavage under general anaesthetic.

They hope that this will enable a more definite diagnosis of Leah’s condition to be made & then they hope to be able to take her off all unnecessary medication and possibly increase the quantities of some medication that might help her.

Results from today’s tests will take 1 or 2 days and they don’t expect to make any major changes to her treatment until towards the end of the week. This procedure is very risky in someone so ill and she may or may not regain consciousness again.

I explained to Leah what was going to happen and then I read to her from Day 5 of Rainbows for Rainy Days by Catherine Campbell. I had some difficulty controlling my emotions & Leah reached out & gave me a big hug.

Just before they put me out of the room so as to set up for the procedure I put on the song “Our God is a great big God” & Leah proceeded to smile & do all the actions while lying there with her eyes closed.

“Our God is a great big God
Our God is a great big God
Our God is a great big God and He holds us in His hands………………………………..
He’s known me and He’s loved me
Since before the world began
How wonderful to be a part of God’s amazing plan.”