I thought she was crazy to even ask the consultant to let her go

I thought she was crazy to even ask the consultant to let her go

This is the emblem of the N.I. Children’s Hospice. Last night was Leah’s High School Formal and every guest was given one of these badges to wear in remembrance of Leah.

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Leah had looked forward so much to going to her own school formal and was very excited about the fact that it was on St Valentine’s Day. The design of the badge seems so fitting for the occasion.

The formal Leah went to in November was her boyfriend’s formal. I thought Leah was crazy to even ask the consultant to let her go. We were just back from Bristol and her immunity was very low. Leah had spent months in isolation.

The haematology consultant looked into Leah’s pleading big brown eyes which were filled with tears. I reckon his head said no but his heart said yes – so yes it was.

Being immune suppressed meant that Leah couldn’t go into crowded places to look for a dress but we found some shops that were very quiet during late night opening. The young shop assistant who helped us choose Leah’s dress was very understanding – Leah had a Hickman central line in place and needed a dress that covered this.

Leah’s toe nails and finger nails had been badly affected by her illness and chemotherapy – she had developed Beau’s lines – so we needed to find a foot care specialist and a beautician who could attend to these.

Leah had never worn her wig (supplied by the Little Princess Trust) so we also needed to find someone local who could style this for her nearer the time. There seemed to be so many challenges in getting Cinderella ready for the ball but thankfully God blessed us with friends with talents and with good contacts.

By the week of the formal Leah’s toe nails were beautifully manicured and they remained so till the day she died.

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Leah wore false finger nails on the night.

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The morning of the formal Leah had a hair appointment at Roco in Derry where we were taken to the VIP suite and served hot chocolate with marshmallows – a treat Leah loved. Ronan, the proprietor, styled her hair (wig) and treated her like a princess.

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Next it was lunch, then off to the beauticians for Leah to get her makeup done. The time just seemed to fly – as soon as we got home it was time to help Leah get dressed. Then Nic was arriving and there was flowers and photos, laughter and excitement.

Our daughter was like any other young girl going to her first formal, excited and beautiful. I was like any other proud mammy, taking lots of photos and choosing the best ones to send to friends and family.

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The next day was Friday. Leah and I spent every Friday in the Bridgewater Suite of Belfast City Hospital. Bridgewater Suite is where haematology and oncology patients go.

As we arrived for our appointment that day my heart felt so heavy. I realized with crushing sadness that the bit where Leah was “just like any other teenage girl” was gone again. We were back to reality – our reality – a reality where my daughter was very sick.

I thank God for a doctor who made a decision from his heart and not his head and gave our daughter the opportunity to be a princess for a day.

Kindness transcends physical environment

Kindness transcends physical environment

Doc says that there has been no further deterioration in Leah’s medical condition & some tests today show a slight improvement. Docs here have been in contact with her consultant in Bristol to get guidance from there also.

This is the third hospital where Leah has been treated as an inpatient this past year. Every hospital is so different & each one excels in different ways.

The ICU @ BCH is part of an old building and has no facilities for relatives, not even a toilet or shower. All the other patients are elderly & I am usually the only relative here outside designated visiting hours.

I think that initially the staff found my constant presence something of a surprise & I was repeatedly asked “Are you staying??” & my answer didn’t vary.

They have now got used to me being here although I haven’t got used to being regularly asked to leave the room so that the staff can “work” with Leah as in Bristol this never happened even once!

However the standard of nursing care is excellent & they have gone to great lengths to make things more comfortable for me during the night & have found somewhere within the hospital where I can have a shower in the morning – as I’ve said before “kindness transcends physical environment”.