Transplant Day +53....Part II - Itchy, Itchy, Itchy!!!

Hi Everyone,

Part II of this weeks blog continues.....

Hope you are all well and thanks for all the lovely texts for Phoebe reassuring her about her hair, bless you all. I will certainly pass your messages to Phoebe.

Bless you..some of you have contacted me and said the blog can sometimes have you guys in tears, in all honesty I just sit and write how things are and how we are feeling, never once thinking it would evoke such emotion. So thank you for all your kind words of support. This journey wasn't always going to be easy and I always endeavour to express feelings as true as possible, it is like being on a rollercoaster sometimes but we have learned for all the heavy hearted times we also have amazingly good times..and I feel to get the true picture we want to be as honest as possible, thank you for sharing this precious time with us xxxx

Phoebe has been on great form today and seems to have more energy than ever!! Whilst I have been working in YDIY HQ!! this week, Phoebe has been enjoying time with the folks and is full of energy and enthusiasm from the moment she opens her eyes to when she is telling us about her day before bed, so much so she starts laughing as she knows everything she wants to say just won't come out quick enough!!!

Itchy, Itchy, Itchy is something we are hearing often as Phoebe shouts out whilst she dashes around and we know this is due to the GvHD, we are managing it with creams and steroids and keeping Rob informed on her rash. We are keen to sort the GvHD and this is showing a little battle going on inside her body, just have to hope and pray Phoebe's powerful cells accept the new stems cells taking charge!!

Whilst Phoebe was in hospital for her transplant, there was plenty of time to think and I decided it was time to apply to become a donor. So when we finally arrived home I contacted The Anthony Nolan Trust - www.anthonynolan.org and applied. From your application they decide whether you are a candidate for the next stage and I am pleased to say that I have now given a sample of saliva and this has been sent off for testing. You never know...I could be chosen to donate....how amazing would that be!! Just awaiting now to see if my application has been accepted at this stage and I will keep you posted.

After Christmas I will be holding some regular recruitment events at the Tollgate in order to help The Anthony Nolan Trust gain more donors and raise awareness for this charity. Without them Phoebe would not be here now, thank goodness they were able to find a donor and who not once but very kindly donated twice...how lucky are we??

Phoebe and I have enjoyed baking recently and I am working on trying to master the same taste as Mum's bread pudding...it's getting there but think it may take a little time It's a great way to recycle bread that could otherwise be wasted...hmm judging by my Dad's face when I gave him a piece..it looks as though....well lets just say...watch your teeth maybe a little tougher than I had anticipated!! He makes me laugh my Dad!!


Friday night saw us heading back to Manchester Hospital to meet Cheryl who was celebrating her 40th Birthday. Cheryl had booked to go on holiday to celebrate with her girlfriends, unfortunately as Emma was diagnosed Cheryl of course needed to cancel her plans. Emma was in the hospital on Friday having treatment and was finally discharged home for the weekend late afternoon, which is great news!! In fine style Cheryl made it to the bar in time to greet us looking fabulous and ready for some time out!! Other parents Carol, Dean and Clare joined us too and we thoroughly enjoyed dinner at Sangams along the curry mile!!

We are all infinitely linked by our amazing children and you get to meet some wonderful, strong, kind and unforgetable families...these are our blessings xxxx

Clare's son Alex is having treatment at the hospital and is due to have his Hickman line inserted soon. Alex, I have spoken to Phoebe about taking a picture of her 'wigglies' so that you can see what they look like. They become part of you after a while and even forget they are there sometimes!! So stop by for the next blog and we will post a photo. We are thinking about you all xxxx

Results from this weeks bloods are brilliant, the potassium level is still holding just in range so we continue with the treatment for this for the moment. Other aspects of Phoebe's bloods are really good and again we can hopefully withdraw further meds over the next few months. We still await the lymphocites to increase but need to be mindful it is still early days being Day +53 into Phoebe's road to recovery.

This weekend we are choosing the winner for Phoebe's Art Competition, we have still received entries in up to now so thank you to everyone who has supported us and sent entries in, they now adorn the corridors of Ward 84 Clinic Area. It's great to hear we have started a little ripple of Art Competitions, the ladies on our local cheese stall in Longton market have started their own Halloween Art Competition, these will all be displayed at the back of the counter so get sticking and painting and take your entries in to them as soon as possible guys!!

Also our friends at GUST Swim School - www.swimteaching.co.uk are very kindly organising a charity calendar raising funds for The Anthony Nolan Trust. They are doing incredible work in helping to save lives not just in the pool but for lives all over the UK!! Vicki is running an art competition with all the children attending classes and each of the chosen pictures will feature on the month's page. Vicki has kindly asked Phoebe to choose the winner which will be displayed on the front cover and they hope to raise over a £1000.00 so if you would like to order one of these calendars please get in touch. I will let you know the price on the next installment! You guys are brilliant!!!

I will also keep you posted on the dates for the Donor recruitment events coming up...

Tonight we dedicate our blog to our dear friend Heidi who has just celebrated receiving a First Class BA (Hons) Degree in Literature and History...oh and to top it off she also completed her first half marathon in Cardiff at the weekend..in 2hrs 12 secs!! You are amazing Heidi...you go girl!!, go take a rest now, you deserve it!! Well done we are all very proud of you and look forward to catching up with you all soon xxxx

Until our next update over the weekend, take care and enjoy the rest of your week folks!!

Rest easy

Much Love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx