Hope this next update finds you all well out there and thanks again for joining us.
It's been a great three weeks since our last update and Phoebe continues to be well, she goes from strength to strength and amazes us with her bravery continuing on like nothing as ever happened!!
We visited the Royal Manchester Children's Hospital for Phoebe's clinic appointment today and this time Rob checked in with us. He is thrilled with the progress made to date although keen to reduce the ciclosporin once more before finally planning to stop all medicines, apart from Penicillin which Phoebe will take for the rest of her life. After chemo there is a chance that there may be some damage to the spleen (one of its roles is keeping your blood clean) following chemo and so the Penicillin just helps to give her body a little help. Phoebe still has dryness of her skin which could be the last remnants of GvHD and a little eczema, but I guess being in semi-isolation and the cold weather of late means staying indoors keeping warm with central heating on and which can make her skin worse.
Bloods have been taken today and these will be used for routine testing along with cell splits, this is where we can define the percentage of donor cells showing in Phoebe's overall bloods against her own cells being produced. The results of this usually take around two weeks. We would like the percentages to continue in stability at 93% or higher, it may have reduced a little and we have to prepare ourselves if this happens...learning to be optimistic realists!!
On the positive front, Ade has celebrated his birthday and this was spent with close friends at Jo and Rob's house, thank you so much for inviting us and hosting Ade's birthday!! We had a great time, it felt such a long time since we were all together, we are incredibly blessed to have such amazing friends who have been with us from day one and every step of the way since, bringing us laughter especially through the tough times!! Thank you guys, you are all a tremendous strength. Ade, being as it was his birthday, had the choice of food for dinner and we asked Phoebe what she thought Daddy would like....CURRY!!!! She shouted!! Oh she so knows her Daddy!!
Following Ade's birthday and also the reason for surrounding ourselves with close friends is also that we think about Eleanor being as it was her memorial on March 1st. It is of course a naturally emotive time although we concentrate on making sure we enjoy ourselves because thinking of our girl brings smiles and we feel she would be happier to see us enjoying ourselves than feeling too sad, we of course raised our glasses to her and keep her in our thoughts and prayers. Thanks for all the incredibly kind messages of love and support from everyone out there.
Now talking of positivity, Mum is doing well and recovering from an operation on her foot, it has been long overdue and she has approached this change in her mobility with great confidence and fortitude, she is determined that this will not deter her from enjoying everyday life. Here she is chilling with Phoebe!!
Life has been busy here and I am working on a few events within the Tollgate, one of which is starting the recruitment clinics for the Anthony Nolan Trust, stay tuned for dates, will keep you posted.
Also arranged is a Charity Family Photo Shoot on Saturday 26th March with photographer Cathy Bower, where you can treat yourself or Mum to a portrait with the whole family or grandchildren even. We have a special offer of half hour sitting and you will have a number of shots taken and 10X8 picture (Roughly A4) for Just £26.00, Marie our resident hair stylist has booked time out so you can have a treat and maybe have a wash and style along with Beauty by Ali who will be coming along to offer treatments....and this is all just in time for Mothers Day....a little something different I thought!! Call me on 07775 533385 to book your appointment. Part of the proceeds will be included in our fundraising for The Anthony Nolan Trust.
Working freelance brings a really varied and interesting week with a few challenges and this week brought a new experience being interviewed for 6Towns Radio.co.uk which is an internet based community radio station. Chatted with Bret about living in Stoke, positive vibes, life in general..oh and of course...Oatcakes!! It was really enjoyable, I felt quite nervous to begin with but after a little while began to relax. Received great feedback from listeners and the team at the Station so special thanks go out to Bret Shah who hosts a show fortnightly 1-3pm. Listen in xx
It's getting quite late now and wanted to update tonight following a really lovely evening celebrating Confirmation, my dear friend Helen's daughter Regan asked me to be her sponsor, what a privilege and honour. Thank you for asking me Regan, I am thrilled, you were a star tonight and read impeccably xx
So for tonight as its now 1.20 and I will bid you goodnight, due to the time I will post some pictures in a gallery form for you to enjoy tomorrow.
Thanks for joining us, rest easy folks.
Until tomorrow
Lynn, Ade, Phoebe and Spirit Eleanor xxx
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