The next Chapter....

Dearest Bloggers and Bloggeroonies...

Hope you are all well and thanks for popping by and taking the time to read our latest update.

Looking back at last month's posting we can't quite believe everything that's being going on and you know me I can chops for England so will do this in two parts mainly as we have lots to tell you.

Apologies for the wait on photo's, hope you like these with many more to follow.

Ok....where do we begin? Well with Phoebe I guess....at the moment, she is doing superb. Fighting off a chesty cough and cold but following our visit to clinic on Friday to see Rob, he is not overly concerned by this after a thorough examination and having a listen to her chest. We discussed how Phoebe's bloods were doing after the last round of tests and at present her white T-Cells remain in the 90's percentage wise with the whole donation of stem cells sticking around 80%. Rob is extremely pleased with Phoebe and her progress and we can continue to feel positive that we are able to look forward to our future as a family...those words we thought we'd never hear!!

Phoebe's skin is doing much better and now using the steroids less regularly, her scalp is still itchy dryness but otherwise everything is well. Apart from this really we continue with regular appointments at the hospital and look forward to everyday life together, enjoying time with family and friends.

We also discussed our Three Peak Challenge that still needs to be completed after raising so much money last year before Phoebe was urgently admitted, we will keep you updated on the plans for this.

Now, talking of family, since our last update at the beginning of May, Geoff, Ade's Dad has celebrated his 70th birthday. It was the first time that Phoebe had actually gone out at night and she was very excited....until she got into the car and promptly fell asleep!!! After a quick nap, she was awake and raring to go at the party, entertaining everyone as you can imagine. Geoff celebrated in style with all their dancing friends and being the very generous Dad he is, decided instead of receiving gifts, he would ask for donations....amazingly over £1,000 was raised and we are extremely grateful to everyone who donated. Thank you very very much everyone. Geoff decided he would donate the funds raised to Rob Wynn (Phoebe's Consultant) at The Royal Manchester Children's Hospital to help with his research funds into these very complicated diseases.

Later in May, we were invited to a candle service at Salford Cathedral for all Children who have passed from Manchester Children's Hospital.

It is a truly lovely service, so thoughtfully put together by Angela and the Family Support Team. We all gather as a family there and take the time to remember our other beautiful daughter Eleanor.

There is a wonderfully calm and peaceful atmosphere, with candles and pictures of all our children placed on the altar. Families gather and it is lovely to see familiar faces, knowing that we are there and connected because of our children brings a special bond between us all. Along with poems and songs, each family take the turn to take a candle up to the altar and then given a simple white rose, such a special touch, its like a little hello from them!
We have all the children's names read out and have an orchestra playing wonderful music, creating a incredible atmosphere, its very positive and we look forward to being involved with next years service - helping to show new families that we can survive and that our children are very much remembered xx

Whilst being at Manchester, you meet some incredible people. During the second transplant, we met up with Cheryl and Emma her daughter, some of you may remember us talking about them, Emma won the art competiton with us. Well, we are thrilled to tell you that Emma is very much on her road to recovery and has started back to school.

At the end of May, Cheryl told us about Donna's Dream House in Blackpool and they were visiting if we would like to join them and another lovely lady called Jo with her son Aiden. We contacted them and arranged to go the next day. Len welcomed us along with the BBC who were filming for BBC North West News and doing a feature on Donna's Dream House. You may have seen this on TV's secret millionaire. This is a wonderful place run by Len and Barbara providing holidays for families with Children who have life threatening/limited diseases. Phoebe and I had a wonderful stay there, with a cinema on site and jacuzzi Phoebe had her first taste of swimming again, she loved it.

We were treated to breakfasts out and a visit to the Zoo. Len arranged for a horse drawn carriage to collect Emma, Phoebe and her friends and took them to the Sealife Centre and Madame Tussauds, it was a fabulous visit and we look forward to staying there again. Thank you everyone for looking after us and
making our stay so special. If you know a family that would enjoy a holiday there, please feel free to contact myself or Len at Donna's Dream House - www.donnasdreamhouse.co.uk

Being out and about again has given us all a new sense of freedom and we have just love being outdoors and taking walks with friends and having time away in the caravan. We had booked some time away before Phoebe begins school and planned to stay in Chepstow for a few days camping at our annual Rhodestock Weekend and then moving onto Devon for the following week. We have returned from an amazing holiday and going on today's weather were extremely pleased to have had such hot sunny days, we were very blessed.

OK...I will hold it there, its a monumental day for us tomorrow and Phoebe is beginning her next chapter by beginning her school life, we will let you know how she gets on this week along with much more to share in part II - stay tuned for the next update this week.

For now dear friends, thanks for joining us...night for now xx