I was not just a relative I was her Mummy

I was not just a relative I was her Mummy


Tuesday morning 14th January’14 found me sitting in my lovely room in the Cancer Centre at Belfast City Hospital.

Leah was going for a CT scan of her lungs.

The policies of the ICU did not permit relatives to accompany patients for these procedures.

My TYA (teenage & young adult) oncology nurse specialist came to see me in my room.

She said that she & my TYA Social Worker were concerned about some of the issues I was experiencing in ICU and the impact of these on my stress levels.

She said that she would speak to the nurse in charge on my behalf and wanted to know which issues I wanted addressed.

I explained that most of the nurses were brilliant and some of the doctors, especially the younger ones, were good at communicating with me – the problem was that how I fared on any given day depended on who was on duty.

I said that there was really only two issues that I wanted addressed.

One was the fact that when certain consultants were in charge I had to beg for information.

Whenever I was asked to leave ICU during Doctors rounds I would say to the nurse looking after Leah “Please ask the consultant to give me an update when he has finished his rounds.”

On more than one occasion this request elicited the following reply from a nurse “It is not the norm in this unit for doctors to speak to relatives on a daily basis.”

I told my TYA nurse that I NEVER wanted to hear that phrase again – the patient in the bed was 16 years old, she was just a child, I was not just a relative I was her mummy, she was dying and I didn’t care what the norm was in that unit – I wanted the opportunity to discuss my daughter’s medical condition with the doctor looking after her, on a daily basis.

The other issue I wanted raised was the amount of time I spent sitting outside ICU in the corridor, separated from my child.

I accepted that the policies of the unit meant that I was asked to leave for all sorts of reasons.

Most of the nurses kept this time as short as possible, but sometimes it seemed that the amount of time I was left sitting out in the corridor varied according to who was on duty.

My time with my critically ill child was so precious to me and I felt actual physical pain in my heart when forcibly separated from her.

I asked my TYA nurse to ask the staff to please keep separations as short as possible.

My TYA nurse was very understanding and went and spoke to the nurse in charge in ICU.

The particular nurse in charge that day was one of the kindest, gentlest people you could ever wish to meet and she was maybe a little taken aback to hear that a small minority of staff treated me very differently to how she treated me.

However, she took on board what was said.

Leah’s CT scan that day showed serious deterioration and we very quickly found ourselves discussing end of life plans, so the goal posts moved quite dramatically.

However, it was so important for me to know that I had professionals like my TYA Oncology Nurse Specialist & Clic Sargent SW who would listen to me, support me and advocate on my behalf.

Leah takes a selfie

Leah takes a selfie


Visitors are not allowed to take photos in ICU but Leah took this “selfie” this morning.

She is very awake but comfortable & making very determined efforts to communicate via her iPad but it’s complicated by the fact that the muscle relaxants have made her vision a bit blurry.

She says that being on the ventilator is easier than when she was struggling to breathe. Leah’s oxygen levels have continued to improve & I am hugely relieved as they certainly weren’t looking so good yesterday, either before or after she went on the ventilator.

I try to choose my words carefully when writing on this Journey page, I’m too tired and befuddled to remember all the ICU consultants names so I have secretly given them nicknames – today we have Mr Happy – they haven’t all been allocated complimentary titles!

Thank you to those who asked – I slept reasonably well last night & feel fairly well rested. I have use of the lovely room in the Cancer Centre over the weekend if I want it.

Leah used her iPad to put this photo on her Facebook page and underneath she wrote the words “Didn’t exactly plan my sweet 16 birthday or the New Year to be like this but thanks to everyone whose been praying. I love you mummy “


My new sleeping arrangements

My new sleeping arrangements

Leah was fully sedated & unconscious last night so I slept in a nice room in the Cancer Centre beside the hospital.
Doc says that Leah made some progress during the night & they have been able to turn down her oxygen a bit which is good news.
They have temporarily reduced her sedation so that she is awake for a while this morning.
She was allowed some Polly Pineapple ice pop which she enjoyed.
The ICU is managed by the anaesthetic consultants on a rota basis so Leah has a different consultant every day – I’ve met 6 so far.
They all have very different personalities & different balances of optimism/pessimism in how they communicate information & some have better “people skills” than others & to an extent this can add to the challenges of the situation.


Diagnosis of PCP

Diagnosis of PCP

Written in the Cancer Centre.
Leah’s chest infection has been confirmed as PCP – a type of pneumonia that only occurs in people who are immunocompromised.
 She’s on continuos oxygen and is on intravenous antibiotics and is back on steroids and is being regularly reviewed by her own Dr and by the ICU Dr in case she needs more intensive support.
If her condition stabilises our Dr hopes to be able to transfer Leah to Altnagelvin, our local hospital, early in the week.
This hospital we are in is approximately 70 miles from home.
Tuesday is Leah’s 16th birthday and the 1st anniversary of when this journey started – it was on her 15th birthday that Leah visited her GP and had a blood test taken which resulted in her being referred to a haematologist.
This led to 3 months of investigations & eventually we received a phone call in April telling us that Leah had paediatric myelodysplasia with monosomy 7 & needed a bone marrow transplant!
Prayer would be much appreciated for Leah’s speedy recovery please.


Admission to the Cancer Centre

Admission to the Cancer Centre


Tonight was to be Leah’s first time attending a big family get together since her bone marrow transplant – she’s day 179 post transplant.
The Dr told us a few weeks ago that her lymphocytes were on the rise & were out of the “danger zone”.
Leah was a bit short of breath when climbing the stairs yesterday but her temperature was normal & she was otherwise well so we decided to wait and mention it at today’s scheduled appointment.
A chest X-ray and subsequent CT scan today revealed a serious chest infection so Leah is now an inpatient in the Cancer Centre at Belfast City Hospital.
The results of her viral screen will be back tomorrow and that will provide a definite diagnosis but the doctor thinks that this is an opportunistic infection i.e. an infection caused by a bacteria or a virus that is not harmful to a healthy person but harms a person whose body’s natural defense against infection is damaged.
If this is the case then Leah hasn’t ‘caught’ this bug from anyone – it is yet another post transplant complication but anyway we should know more tomorrow.