I knew that treatment would drastically alter her appearance

Within days of Leah’s diagnosis I knew that I wanted professional photos.

I wasn’t really expecting Leah to die but I knew that treatment would drastically alter her appearance.

Chemotherapy causes hair loss and high dose steroids cause hamster cheeks.

I explained to Leah that I wanted some photos of her as she was then, so that she could look at these when she was going through her treatment and use them to remind herself of what she normally looked like and would look like again.

As a family we never did professional photos so I didn’t want to go to some formal studio, I wanted Leah to feel like she was visiting a friend who happened to have a camera.

I knew just the person, she works from home, and she has a very cute baby – Alison Hill

When I talked to Leah about this she said that she didn’t want to go on her own, she wanted her boyfriend Nic to go with her.

So Alison took some photos of her and Nic together and some of each of them on their own.

This was good too as it meant that Leah had some beautiful photos of her and Nic together, to stick on her wall when she was in hospital.

Leah and Nic had a brilliant evening’s fun at Alison’s house while Nic’s Mum and I had a lovely walk in nearby Muff Glen.

I now have 32 absolutely gorgeous professional photos of Leah.

Last week Alison sent me a gift of a 6″x4″ copy of every photo from the photo-shoot which I have put in a little album.

She also sent me two CD ROMs of all the photos – one for me and one for Nic.

These photos are so beautiful and so precious to me now.

Do not be afraid; do not be discouraged,

Leah is quite sedated today but when I speak to her she opens her eyes & will often indicate ‘yes’ or ‘no’ by nodding or shaking her head.

The Doc on duty is “old school” and the last time he spoke to me he was so blunt and pessimistic about Leah’s chances of survival that I had a very sleepless night – my ONLY sleepless night since Leah’s admission as I am quite practiced at sleeping in a hospital environment.

Therefore I was not looking forward to what Dr KillJoy had to say to me today. I certainly don’t want any Dr to give me false hope, I just don’t want them to take away hope completely and thankfully today he didn’t.

None of the samples taken from Leah’s lungs on Monday have grown any bacteria, viruses or fungi so the Docs have now concluded that her respiratory failure has been caused by inflammation in her lungs not infection, but this is still a complication of transplant.

They are now giving her mega doses of intravenous steroids. They have also decided to defer the immunoglobulin and I have been given a few different reasons for this – personally I think it’s because doctors differ!

Today’s Doc says that Leah’s condition is static – that in itself is good news – that nothing major has gone down hill since yesterday. He says that if there is going to be a positive response to the steroid therapy it will take at least 4 or 5 days – so let’s keep hoping and praying.

I’m going back in to Leah now to play all those beautiful faith filled songs that she loves to listen to. Thank you everyone for your lovely messages of support.

Every day as I head into ICU I try to fix my mind on one Bible verse that will give me the strength to keep going – this is today’s verse –

“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9

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.