Transplant Day +178 ...Giving a little back!

Dearest Bloggers...

You are all so kind, thanks very much for all the wonderful and positive feedback that we receive after each posting and its great to hear we have so many followers!!

We would like to welcome our new Bloggers who have recently joined us, please feel free to register on blogger and leave any messages below if there are any questions you would like to ask, alternatively please feel free to e-mail me at lynn@oldfields.net

Hope this latest update finds you all well and enjoying life through these drizzly days. After speaking to many of you, there are bloggers out there taking the opportunity to jet off to warmer climates especially as its half term, have a great time everyone and we look forward to hearing all about your trip!!

With all this rain and cold weather, we are spending lots of time keeping snug and avoiding all the bugs and viruses out there at the moment. This is imperative for Phoebe as her immune system continues to recover and develop at a slow and steady pace. Phoebe remains in a semi-isolation status and we now may be for a little while longer than expected.

Following our visit to The Royal Manchester Children's Hospital on Monday, Denise, who is one of Phoebe's consultants has decided to try and reduce the medicine Ciclosporin a little further this week. This is an immuno-suppressant therapy and as we reduce this by 0.1ml each week its very important to monitor Phoebe particularly with her skin as this may break down and be vulnerable to infection. The immunosuppressant therapy is used to reduce the activity of Phoebe's immune system and therefore avoid the risk of potentially fatal GvHD.


Routine bloods have been taken at the hospital and Phoebe was incredibly brave although she was quite upset with me after waking up from a deep nap and finding I had placed the anaesthetic cream on her hands rather than her arms. As she has been having weekly blood tests we note that the veins are beginning to break down a little which is normal when you are having regular testing. Denise and Rob are otherwise incredibly pleased with Phoebe and her progress to date. We too are thrilled as the graft appears stable at around 93% donor and we only hope and pray this continues. Rob is positive that the graft will stay and in most but not all cases a second transplant settles in the 90's...

As you see Phoebe's hair is now beginning to grow again and she reminds me of a little pixie!! One of my many lessons learnt throughout this process is that even some 3 year olds are actually aware of their self image. Phoebe is much happier that her hair is growing and in many post-transplant patients there can be changes to the condition of the hair...Phoebe is now developing curly hair!!!

Like many of you out there, the thought of summer is helping us to stay bright and cheery through these dark rainy days....with plans to head out for some long weekends with the caravan (now affectionately known as Shed-draggers!!) we can at least plan for a few mini-breaks around the country. We will be visiting campsites within a few hours drive of Manchester, this brings reassurance should we need to be admitted if Phoebe develops a temperature etc.

Even though Phoebe is in semi-isolation, Ade and I are able to head out and see friends providing they are free from colds and viruses etc. Phoebe however, is still unable to mix with any children and bless her, she is really keen to see her friends and play but she understands very well that once her blood has recovered we can make up for lost time!! We enjoyed dinner with our dear friends Helen, Jonathan, Heidi and Iain on Saturday, hope you had a lovely birthday Heidi. Travis, Stella and Nathan brought some lovely homemade gifts and books for Phoebe. Thank you so very much guys. Phoebe loved the letters and was thrilled when she saw Stella's brilliant homemade paper icecream too!! Very much looking forward to joining you all for the Rhodestock Camping Festival...Did you decide on the theme this year of Literary Characters?

Some great news on the fundraising...the team are looking to do the three peak challenge again this year which was post-poned last year following Phoebe's unforeseen admission...will keep you posted on the date. Also our friends at GUST swimschool www.swimteaching.co.uk who designed the Charity Calendar for the Anthony Nolan Trust have almost finalised the incredible amount raised so far and this well exeeds a £1000.00 - a special thank you to you guys and Gwen at the Tollgate for the amazing fundraising and to everyone who has so generously given to this cause. Without the Anthony Nolan Trust - Phoebe would not have survived.

Please read the amazing story of how the Trust began - www.independent.co.uk/news/obituaries/shirley-nolan-648598.html

After reading this story it's difficult to believe that because of Anthony and Shirley's experience and her challenging campaign, we have been able to keep Phoebe alive by finding her a suitable donor...it leaves you feeling truly overwhelmed.

Other special news to share and I am delighted to tell you I have now been accepted by the Trust as an eligible donor and have my fingers crossed that I will be a suitable match for someone. With this in mind I will be contacting The Anthony Nolan Trust to organise donor recruitment clinics at the Tollgate ...decided to set myself a target to sign 1000 donors and within minutes of posting this onto Facebook I had lots of people commenting that they would be ready to sign up for me...you are all brilliant...Thank you, will keep you posted. Thank you to everyone who responded whether already accepted or unable to donate for medical reasons...its great to know we have such incredible support out there, very much appreciated xx

There is still so much news to share and its getting into the early hours now so...part II will follow in the next few days, for now...

Rest easy folks and I look forward to catching you all in the next few days. All our love Lynn, Ade, Phoebe and Spirit Eleanor xxx