1st Day of Conditioning Treatment

Hi Everyone,


Hope all is well, it was lovely to see some of you have found the blog and its been really nice to hear the positive feedback.


Well, what a start to the day. Phoebs woke at around 6.15am and we opened the curtains to a lovely snowy view (ok, it is of the hospital car park but compared to a wall with some stone steps, we've definitely been upgraded to the luxury suite!!) - She loved it, there was a set of footprints pressed into the snow, it was a perfect opportunity to start telling her about Santa!!!

Its been a fairly busy day today with the nurses popping in to do regular observations on Phoebe and the consultants visiting us with updates ready for the start of Phase II. There was a little anticipation about today as the first day of conditioning is usually the worst when it comes to the reactions to the drugs. We were just awaiting clearance from the donor side of things before we could proceed. Nuti - one of the doctors looking after Phoebs asked Ade and I for a sample of blood to be sent to Cambridge Uni as they are continuing the work in researching the genetics in the hope of locating the gene. It went quite well and Nuti managed to get a good sample, I gave him a giggle when he actually thought I was being serious about having a 'I've been brave' sticker!! Ade did well too considering he doesn't particularly like needles. Phoebs was quite excited when we both came back with plasters the same as hers!!

Nuti spent some time with Phoebe and was surprised how well she was doing with her development, I think the impression of the pig won him over!! Sarah, our BMT co-ordinator has been really great keeping us updated and spending time with Phoebe, they are all so pleased with her and all remain really upbeat on a positive outcome with Phoebe being so well. Jo, one of the Ward Sisters here, spent some time with us too, doing assessments and explaining things on the care plan side. Sarah, Jo and all the staff have made us feel very comfortable since we arrived and confident too that Phoebe is having the best care. It was nice to talk with Jo and get to know her a little more..we talked about her nursing career and bizarrely it turns out that she travelled in Oz and was working in Sydney 1996/1997 when I was there; it was nice to reminisce about Sydney and where we used to live.

The Hickman line is working well and is so much easier for Phoebe than going through all the stress of trying to get bloods the regular way. Nothing more could be done until we had the clearance so we decided to take a trip down the main hospital corridor for a walk (we live on the edge, us!!!), trying to give Phoebe a bit of freedom before the isolation part starts. We visited the shop and - even in hospital - girls I managed to bag a bargain!! BAG IT!! We bought some nice tinsel and a foil Christmas tree to hang in Phoebe's room.

Angela - our family counsellor came to see us and was so pleased to see Phoebe doing so well. Angela has been an immense source of support from day 1 of being transfered here with Eleanor through to the present day. We've always popped by to see her for a cuppa when we can, she's lovely and just has this calm aura around her.

Bless 'em, the troops came today (Mum, Dad and Gwen [Ade's Mum])and they braved the snow for us and arrived with a fabulous buffet of sandwiches that could have fed the hospital, pickles and crisps to boot!! They are such brilliant parents and have looked after us incredibly, we are so blessed. Phoebe was really pleased to see them and greeted them with a resounding Nannnnnnaaaaaaaaa!!!!! and Ga Ga. She took Gwen straight off to show her the new Christmas tree on the ward, Phoebs new words for today have been baubles and scissors, or as Phoebs says ....ssszzzz, it's quite a hard word really when you think about it!!


Phoebe seemed to get really tired this afternoon, so took the opportunity to have a 20 min power nap, felt like I'd been asleep for hours. Ade took the Mums and Dad over to his new pad (the parents accommodation), he has a nice sized room with shower facilites and kitchen etc. We are really lucky to be able to stay over and be so close to Phoebe during this time.

We were told by a few of the nurses, during our time here with Eleanor in the older hospital blocks, that in the past parents had to leave their children on the ward and would not be able to see them again until they were well ....how times have changed hey!!


Time was pressing on and the cut off time to start the treatment was by 3.30pm. We thought now that the treatment would be started tomorrow but at 3.00pm we received word that we were going ahead. Madg is one of the consultants working along side Rob Wynn, and he came by to explain about the delays and the procedures going forward, bless him, he's lovely too!! Rob came to see how we were all doing and was pleased we could start today. We started at 3.15pm and finished around 9.00pm. Phoebe has done really well, especially coping with the side effects, she started with a temp which peaked at 39 but antibiotics and paracetamol were started and she seems to have settled more now. She's not really had much appetite today which is fairly expected but has been really thirsty. We are so very proud of her, she is doing really well considering this is probably the hardest day, more tomorrow..Onwards and Upwards!!

Well its 12.20am and need to get some kippage in...

Thanks for joining us and for all your constant love, support and positive vibes, it means so much, please don't forget to pass the blog address on and I look forward to catching up with you tomorrow.

For now dear friends...

Good Night xx