Not quite to plan.....

Hey there everyone,

Welcome folks once again, can’t believe another day has passed so quickly. Our day hasn’t gone quite as planned due to the fact that Phoebe should have been in theatre this morning for Hickman Line insertion. We fasted from 3am for food and last drink at 6am...or so we thought. We were all ready to go but unfortunately there were a number of emergency patients that needed to be seen, so today we have learnt about patience. Phoebe coped incredibly well with not being able to drink or eat until 4.45pm even though she asked every 2 mins for an oatcake with cheese...you can take the girl out of Stoke, but can’t take the Stoke outta the girl!!! My goodness, I have never seen Phoebe eat so fast, it was like a conveyor belt passing the food and drink along...she was SOOOO hungry!! For tomorrow, we wait and repeat the same routine again and hopefully Phoebe will be called down first thing.

It’s remarkable how you become conditioned to the routine of everyday life whilst staying here in Manchester. Phoebe continues to amaze us with her strength and endurance throughout this time which is also helped by all the great support from you guys out there. Here on the ward you feel part of a big family as we spend the day drifting around the ward, into the play room and into the parent’s room. It’s interesting to hear all the different stories from the patients and parents we meet and there is a great atmosphere on the ward, very relaxing and the staff make you feel very welcome.

Phoebe continues with good progress and for today no further evidence of visual disturbance, we can breathe a sigh of relief for now, we have learnt after so many times not to get our hopes up but to keep hope within us and take each hour as it comes.

There is no decision made as yet with regards to the date when we will be starting treatment to remove Phoebe’s immune system, it’s a case of keeping things in balance and watching results. Our friends Jonathan, Jude and West came to visit us last night and sat in with us whilst we shared some time talking with Steven Hughes. Steven is a genetic immunologist and is working with Rob very closely regarding the treatment. After a long day for all of us, we strolled out feeling incredibly humbled that we have such amazing people working very hard to heal Phoebe.

So guys, tonight I’ll keep it brief only having a couple of hours sleep last night...

Just a few mentions....

A very special Congratulations and Well Done to Regan who has collected a music award from school and special award for head girl in her year....So proud of you Regan, Well Done...Regan is a lovely girl and has a wonderful mum and I am very privileged to call Helen a dear friend....must run in the family as Isaac, Regan’s brother won the same award last year!! Great news, it made our day.

Special mention to Joseph who had a brief stay in our ward, he was very brave, bless him and possibly the most stylish little chap who would certainly give Becks a run for his money!!

Also to our new neighbour Cameron, who is proving to be a very entertaining member of our ward, so welcome Cameron, its lovely and lively having you around.

To our new found friend Cheryl who is staying here with her daughter Emma, Cheryl brings the warmest smile and has made us feel so welcome, you know when you have made a friend for life...thanks for making this time that little bit easier, its lovely to spend some time with you... Thinking of you. xxxx

Our dear friend Rachel sent us a text which was lovely, bless you...it read ‘May God be in Rob’s mind, heart and hands whilst looking after Phoebe and we of course extend this out to all the doctors and nurses who are caring for children in hospital and receiving treatment around the world.. Thanks Rachel.

So here’s to a new day with lots more positive progress you tell you about and we look forward to catching up tomorrow.

Rest easy dear friends....

Much love

Lynn, Ade, Phoebe and Spirit Eleanor xxx