Yesterday I was savouring the memories of the 26th December 2013 – the last day that Leah’s laughter rang out in our house.
Today I have a very different prevailing memory of this time last year.
It is of our normally cheerful haematology consultant looking ashen faced and distressed.
It is of standing beside our consultant in the Bridgewater Suite and gazing in shocked silence at the CT images of Leah’s lungs on a computer screen. Leah didn’t even seem particularly unwell at this stage.
It is of lying on a camp bed in Leah’s room in the Cancer Centre that night, feeling too scared to go to sleep.
I’ve always been a good sleeper and no matter how ill Leah was before this, I slept well, only waking when she needed me.
I knew that we were in uncharted territory.
One of the reasons I was too scared to sleep in the Cancer Centre that night was because I could hear Leah’s breathing deteriorating.
Another reason was because the ward that we were on was not staffed to cater for patients as ill as Leah was quickly becoming. There was only two staff on duty that night.
We were in a single room and Leah was either being barrier nursed or reverse barrier nursed – I can’t remember which. Either way, the staff had to wear aprons and gloves coming into the room. This meant that the staff couldn’t just “pop in” to see if we were okay, when they were passing by.
I hadn’t had a tour of the ward so I didn’t know where anything was. Therefore I had to press the buzzer to get a vomit bowl. By the time a member of staff was free to bring it, Leah had vomited on the floor and the nurse expressed her annoyance, as this added even further to her workload.
To be fair, the staff were very vigilant in monitoring Leah’s medical condition during the night and they sent for the doctor on call on three different occasions as Leah’s condition deteriorated.
The next morning the staff were still insisting that Leah took all her meds orally – including her anti-sickness meds – and I was very concerned about this as she was vomiting them back up. I asked the nurse to get her written up for intravenous meds instead. The nurse explained that they didn’t stock all the meds that Leah needed in intravenous form on that ward and did I not understand how important it was to get Leah to take all her medication? I tried to explain that it was BECAUSE I knew how important her medication was, that I wanted it given intravenously through her Hickman central line.
Then when Leah became too ill to walk to the toilet, a nurse and a physio came to get her out to the commode. They looked surprised when Leah clutched her back in pain. I pointed out that she had a fractured spine between T6 & T8 and they were shocked – they didn’t seem aware of this fact.
In the early afternoon I left my daughter in the care of her lovely boyfriend, while I escaped briefly to a nearby coffee shop with a friend for some breathing space.
This is NOT representative of the care in the Cancer Centre, as we have had other VERY positive experiences there, as have had many other people. It was just an unfortunate series of events whereby Leah rapidly became too ill for the environment in which she was being nursed and that was no one person’s fault. Click here to read about Leah’s first admission to the Cancer Centre, this was a very positive experience.
Twenty hours after being admitted to the Cancer Centre, Leah was rushed to the ICU, where all her nursing and medical needs were met, to a very high standard.
As Leah’s mother, I never wanted to leave her side. I always wanted to be there to comfort her, to reassure her and to ensure, that day or night, her nursing and medical needs were attended to in the best possible way.
My constant presence in ICU at Belfast City Hospital was certainly a new experience for ICU staff. It was unusual to see other relatives there outside the strict visiting hours.
Initially I was repeatedly asked when I was going home. My answer never varied. When pressed, I told them that as long as my daughter was ill, the only way that they would get rid of me would be to call hospital security or the police!
There was no facilities, no relatives room, nothing. I hated having to leave ICU to use the public toilets in the main hospital foyer – I always worried that I would carry some kind of an infection back in with me.
In general the staff in ICU were very kind to me and did their best to make our stay a pleasant one.
I also valued the support that we received from our TYA Cancer Nurse Specialist, our Clic Sargent Social Worker, our N.I. Cancer Fund for Children Support Worker and the hospital chaplains. Click here for more information on the teenage and young adult (TYA) support services at Belfast City Hospital.
Family and friends constantly supported us too.
It was nevertheless the hardest two and a half weeks of my entire life.
Through it all, every day, Leah’s favourite Christian songs played in her room on her iPad – or on mine when hers was charging. Their words ministered to us. The staff often commented on the lovely songs.
Here is one that I particularly associate with that time:
CORNERSTONE by Hillsongs
When Darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil
My anchor holds within the veil
Christ alone; cornerstone
Weak made strong; in the Saviour’s love
Through the storm, He is Lord
Lord of all
He is Lord
Lord of all