Girls just want to have fun.

Girls just want to have fun.

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In many ways Leah’s experience of our 14 weeks in Bristol was quite different to mine.

For starters she spent much of it in isolation – either on the bone marrow transplant unit or in her ensuite room on the beautiful purpose built Adolescent Ward.

Her room was lovely but her world was very small.

My world was much bigger.

When Nic was over visiting Leah, I was “off duty” by day and able to explore Bristol on foot – a very beautiful City.

One day I was heading to Za Za Bazaar for lunch with my sister, when we happened upon a very old church built into the remains of Bristol’s City Walls.

This Church of St John the Baptist was open to the public and we went inside and got chatting to the two volunteers who were manning it that day.

As soon as they heard about Leah they offered to pray with me for her on the spot – it was a very precious moment.

A subsequent visit to google elicited the information that this church was “built in the 14th century as a place for travelers to offer prayers before a journey“.

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Another obvious difference between Leah’s experience and mine was that she was often very ill – symptoms of her illness, side-effects of treatment, complications of transplant etc.

Leah had nausea, frequent vomiting, fever, rigors, nose bleeds, mucositis, diarrhea, hemorrhagic cystitis, urgency, frequency, incontinence, insomnia, bone pain, joint pain, muscle pain, skin rashes, tiredness and weakness, though thankfully not all of these occurred simultaneously.

The isolation made Leah very home sick and she pined for friends and family.

I also missed friends and family, but at the same time I benefited greatly from making friends with other parents in a similar situation.

Because Leah had always been treated through the adult services at home I didn’t have any contact with other oncology mums in Ireland.

I made deep and lasting friendships in Bristol with some amazing people. When Leah was subsequently in ICU in Belfast & critically ill, I received beautiful heartfelt messages of support from these parents, in a real outpouring of love.

However the best thing about Bristol for me was that I was completely released from all the other responsibilities and concerns in my life and had only one concern every day when I woke – Leah.

Now that Leah is no longer here, I thank God that for those 14 weeks when I had no distractions, no domestic responsibilities, no housework, nothing other than the care of my beautiful but sick daughter.

In the midst of it all are some very happy memories.

There’s the week in early September when we knew her transplant was successful but the post transplant complications hadn’t yet set in and we had the “sneaky” trip out of hospital to Bristol’s flagship Primark store.

Leah spied the Costa cafe in store and pleaded successfully with me to let her have a drink and a bun – we must have broken every post transplant rule in one fell swoop – I was really panicking, but what could I do – girls just want to have fun!

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There was the warm September evenings after the shops were closed when we walked down town from the hospital to see the Gromits and had to get a taxi back because Leah’s legs wouldn’t carry her any further.

When our consultant found out he sternly reprimanded us and said that for her own safety Leah needed to live in self-imposed exile – I knew he meant well so we behaved ourselves after that wee “break-out”!

There were the many good times in SAM’s House spent baking buns & tray bakes & just hanging out with other families.

There’s the beautiful Royal Fort Gardens beside SAMs House where Leah & I regularly walked & sat on a bench to chat or text.

We used to sit really still just to see how close the grey squirrels would come, then Leah would try to photograph them because she thought they were so cute.

Squirrel in royal fort gardens

At one stage the DVD player in Leah’s hospital room didn’t work so the support worker from the Teenage Cancer Trust brought us a portable DVD player.

We ordered films online that we both liked. Minstrels

At night we would snuggle up together in her hospital bed to watch them, while munching through a bag of Galaxy Minstrels.

Then there were the visits from family or friends – these were very eagerly awaited events.

Depending on where we were, most visitors got a guided tour of either SAMs House or the Adolescent Ward, with as much pride as if they were being shown around our own house – it was, after all, our “home” even if only temporary.

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On Sundays, if we had stayed overnight in SAMs House, Leah would have a lie on while I went to a brilliant church called Pip n Jay.

When I got back from church we would cook dinner together – usually sirloin steak – I had black pepper sauce and she had gravy. We would have potato croquettes and roast potatoes, vegetables and lots of Yorkshire puddings. Ice-cream was usually on the dessert menu.

Afterwards she washed and I dried. Leah loved her food and when she was well enough to eat, I just wanted everything to be really tasty.

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When Leah was in hospital she would send me to Starbucks for a peach and mango frappuccino or to M&S for a particular milkshake we both liked or for a wee tub of Ben & Jerry’s ice cream from Tesco or some frozen yogurt from Sainsbury’s.

I loved the fresh air and exercise and the chance to see around me that came with these shopping excursions.

For our last few weeks in Bristol the post transplant prohibition on takeaway food was lifted so we had treats like Domino’s pizza one day or a Chinese takeaway another.

Because I only had Leah to think about, her wish was well and truly my command, and that, for both of us, was such a blessing.

I only have eyes for you

I only have eyes for you

Leah & Doodles, 2/9/13, Cabot Circus Shopping Centre in Bristol

2nd September 2013

Leah meets Doodles while on a “sneaky” visit to Cabot Circus Shopping Centre when she was supposed to be in self imposed exile after her bone marrow transplant.

It was late in the evening when the shops were all closed and Leah was desperate to do a little Gromiteering before the Gromits were all gathered up to be auctioned at The Greatest Dog Show on Earth to raise funds for Bristol Children’s Hospital.

If God sends us over rocky paths, He will provide us with sturdy shoes

If God sends us over rocky paths, He will provide us with sturdy shoes

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Just found this lovely photo of Leah sleeping with Duckie & Gromit in her bed on the Adolescent Ward in Bristol taken 30th August 2013.
Leah had her bone marrow transplant on 1st August ’13 & by the end of August we knew that it was successful & she appeared to be making a good recovery.
At this stage Leah hadn’t developed any of the side effects/complications from her transplant that were to ultimately blight her health.
We were both on a high, thinking that she had come through the worst and that things could only get better.
I have said so often this past year that I would not want to know the future, because God only gives you the grace to cope when you are in the situation – or – in the words of today’s reading in Streams in the Desert –
Each of us may be sure that if God sends us over rocky paths, He will provide us with sturdy shoes.
 He will never send us on any journey without equipping us well.
 
Does this man have kids?

Does this man have kids?

Just before 2pm they put Nic and me out of the room so that they could start the process of putting Leah on the ventilator.

The Doc wouldn’t let me stay with Leah until they administered the anesthetic that would put her to sleep because he said that he needed space to set up his equipment and I would be in his way – does this man have kids?

We left Leah awake and cuddling “Duckie” & “Bristol Gromit”. I thought my heart was going to break saying goodbye to her but I had to hide my emotions for Leah’s sake.

They said that they will call us back in about an hour. Nic, Leah & I have spent the last couple of hours listening to Leah’s favourite praise & worship music on YouTube; mostly Rend Collective Experiment & especially “My Lighthouse” – verse 2 goes

“In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are my peace in the troubled sea
You are my peace in the troubled sea.”

We also read from Rainbows for Rainy Days written by Catherine Campbell and Streams in the Desert.