Transplant Day +158......Almost at the summit now....we hope!!

Evening Dear Bloggers,

Wow, its the 1st of February 2011 already and what a busy month January has been!!

We hope you are all well and thanks for joining us again for the next update in Phoebe's journey.

With lots to catch up on since part one of this update, we are pleased to be able to tell you that Phoebe has been making great progress this week, particularly with the condition GvHD. GvHD is where incoming cells attacks the host and this condition has been lingering for some time now, to understand it a little easier, it looks as though the donor cells are taking charge and winning the fight. The donor blood is now producing more donor stem cells.

Ade and I feel like we are reaching the summit of the gigantic mountain which has taken some 7 years to climb although we are still learning to master the art of patience and resist even daring to believe that this whole experience with our children is hopefully coming to a positive conclusion.

In some ways, experiencing this journey has taught us the importance and gift in some ways to live in the moment, just accepting what is and to just 'be'. This takes the pressure off disappointment although you also live with a sharper awareness that things can also change in a moment, taking you out of your comfort zone.....thus again bringing a precious reminder of our blessings which we sometimes take for granted....

Not that I have been thinking very much about all this, enough philosophy for now!!!

Ok, so Phoebe's recovery....with the condition GvHD, it can affect the patient in different ways and with Phoebe it has affected her skin to the point where it completely cracks across all the joints in her fingers, she has coped so well with the pain of this...and you know what this is like if you get those tiny cuts on the edge of your thumb nails or with a paper cut, it affects your nerve endings ...eeek. She is so brave bless her.

At clinic with Rob last Monday, he was thrilled by her wellness overall, particularly as it had been two weeks since we stopped the steroids. Previously, when reducing the steroids it has agitated the GvHD rather more and could be clearly shown in the condition of Phoebe's skin but by Wednesday and it seemed as if it happened overnight...we saw dramatic and dare I say miraculous change to Phoebe's skin. Instead of having lumpy, cracked and sore areas on her ears, hands, chest and feet, her skin felt so smooth, you can see the amazing change to her. It's been so long since she has been able to keep her hands in water for more than a couple of seconds before getting upset but this week she has happily splashed about in the sink, taken baths and enjoyed playing particularly covering the bathroom walls shooting with her water jet...oh the joys, bless her!!!

We hope that the GvHD has burnt out now meaning we are about to start on our next task of tapering off the immunosuppressant therapy called Ciclosporin. As Phoebe's neutrophil cells are increasing, this will allow other white bloods cells to start doing their work and fighting off viruses and bacteria.

So with this renewed optimism, we allowed ourselves to relax a little and with our friend Estelle, we arranged to meet some of our hospital family for dinner at Tampopo in Albert Square in Manchester. www.tampopo.co.uk.

It was Carol's birthday and the evening was filled with plenty of giggles, a few cocktails, superb food in one of our favourite restaurants and very entertaining company...a great night. Thanks everyone for making our evening out so enjoyable. Happy Birthday Caz!!

Phoebe is keeping busy with baking and Santa very kindly brought us lots of lovely gifts from The Kids Cooking Company, www.thekidscookingcompany.co.uk here she is looking cheeky whilst baking with Lucy our community support looking very busy making muffins!! Aaah and other ways to use the mixing bowl!!

Getting geared up to take our first trip out in the caravan this year and campsites are almost booked ready for the long weekends we are having at Easter especially with the Royal Wedding!

Thank you so very much for all the wonderful support and kind words of encouragement for writing the blog, its a pleasure and we have lots more news to update you on....stay tuned!!

So, for now folks rest easy and we'll keep you updated following our next clinic appointment on Monday.

With love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx