words of encouragement

On Monday 23rd September 2013 the unthinkable happened – little baby A in the Bone Marrow Transplant Unit died unexpectedly, just three days before he was due to be discharged home.

He had been in the unit when Leah was having her transplant. His mum lived locally and left periodically to visit her two other young children who also had medical needs. I used to gaze through the glass at this adorable infant. I had to fight off the almost irresistible urge to enter his cubicle and lift him for a cuddle. My head just about ruled my heart on this one.

I got to know his mum quite well and sometimes Leah was with me when she and I stopped for a chat. Leah and I were devastated on many levels regarding the death of baby A.

We had been told that Leah’s chances of survival were two out of three.

Despite having worked many years in the Health Service and having also worked with young children with life limiting conditions, I had never personally known a child who had died from cancer.

Up until this point, the possibility that Leah, or any child might die, still wasn’t something that I really believed was likely to happen. In my mind, the statistics applied to children I didn’t know, in some far away place like America.

Now, however, everything had changed. The statistics for children who died from complications of bone marrow transplant now had a face and a name. They even had a Mummy, someone I had come to know quite well. Leah and I were heartbroken for this family, but we were also quite unnerved.

Another factor in the equation was that Leah was on high dose steroids and it is recognised that these can cause psychiatric side effects such as depression. After this baby’s death, Leah’s mood started to plummet. She became desperately homesick and pined for her family and friends.

We were given an appointment with our consultant for Monday 30th September to meet with him to agree on a date for booking our flights home. On Sunday night 29th September Leah started passing blood stained urine and I knew that we were in trouble. She was up to the toilet every hour during the night.

On Monday morning I was too scared to tell Leah that we needed to bring our overnight bags with us to the hospital – she was fixated on getting a date for going home.

Leah saw her consultant alright – he told her that her haemorrhagic cystitis was more than likely caused by BK polyoma virus. It’s an opportunistic infection that can occur post transplant and is very nasty and difficult to treat. Leah became very upset when she realised that she was being readmitted to hospital indefinitely.

We spent the whole day in Oncology Day Beds because there was no beds available on the Adolescent Ward. Eventually we were told that the only beds available were on the Bone Marrow Transplant Unit. Leah was given a choice between the room in which baby A had died or the horrible cubicle 4 in which she had started off – cubicle 4 it was. Leah was in a very distressed state.

On Wednesday evening 2nd October ’13 Leah was transferred to a room on the Adolescent Ward. This was a huge relief to us, as her daddy & younger sister (aged 9 years) were booked to visit that weekend and children are not allowed to visit patients on the Transplant Unit, due to the strict infection control regulations.

October ’13 was the month that Leah found the hardest of her entire illness. I write in more detail about some of these struggles in It Was Worse Than Chemotherapy

I actually find it difficult to look at photos of Leah taken that month, knowing what she was going through.

Our youngest daughter’s birthday is on the 25th October. It broke my heart to have to tell my daughter that her Mummy probably wouldn’t be home in Ireland for her 10th birthday. Leah and I had been in Bristol since the 21st July. I had already missed her first day back at school and many other events in her life, that as her Mummy I didn’t want to miss.

So I decided to make the best that I could of our situation. While Horace sat with Leah, she and I set out to have fun in Bristol town centre. First we went to their amazing Primark store. She chose a Snowman jacket.

Then we had a pizza together. We followed that with her first ever trip to Build-A-Bear. When the sales assistant told her to hold the bear’s heart in her hand to make a wish, I could feel the tears sting my eyes. There was so much to wish for.

She called her bear Rainbow – I think it’s a cat actually.

Finally I took her to the Lone Star Candy Bar American sweet shop and gave her £10 to spend – she was ecstatic.

Leah absolutely loved having her younger sister and her dad over for the weekend.

This is what Leah posted on our private Facebook page around that time:

Many people responded and sent us pictures, encouraging words, assurances of prayer and suggestions of songs to listen to. Leah and I spent days reading all of these and listening to each song suggestion. We greatly appreciated everyone’s words of encouragement. This is one of the songs that was sent to us in response to Leah’s plea:

Worn
By Tenth Avenue North

I’m Tired I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

I know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have left

My prayers are wearing thin
Yeah, I’m worn
Even before the day begins
Yeah, I’m worn
I’ve lost my will to fight
I’m worn
So, heaven come and flood my eyes

Though I’m worn
Yeah I’m worn

I am very much appreciating everyone’s prayers & words of encouragement thank you.

Leah’s breathing is currently being assisted by something called “non invasive cpap”.

Drs have told us that a ventilator may eventually become necessary.

So far there has not been a significant response to the various treatments being used and this is worrying.

Leah’s own immune system also needs to be able to fight this infection but her immune system is seriously weakened due to her transplant.

This is a very challenging time & much prayer is needed & I know from your messages & texts that very many people are praying for us right now – thank you so much from the bottom of our hearts.