Ok...we're back......The Journey Continues.....

Dearest Bloggers,

Well…. we’re back having taken a little break, thanks for joining us here for another update on Phoebe’s progress. We do hope you have all been well since our last visit and it seems we have been greatly missed following all the tremendous support and concern shown whilst being away.

Amongst the many positives experienced since embarking on this great journey with my beautiful girls, one of my greatest lessons is learning to live in the moment and ‘just being’. This great journey has no doubt had an incredible effect on all of us, testing us with its fair share of amazing highs and physically draining lows but nevertheless we have come to appreciate all of those times.

For me I have greatly welcomed the fact that I have been able to talk to you guys about everything but for some reason the last couple of weeks have left me experiencing only what can be termed as writers block! Its that feeling …ok I’ll take a break and update tomorrow and then when I get a spare hour, the exhaustion takes hold…I’ll do it tomorrow I’ll think…but then tomorrow comes around again so quickly….and again I’ve fallen asleep but like I say, its taking those times for what they are, listening to your inner voice and just going with the flow of life….my my…I am sounding philosophical these days….

So..to our dearest Phoebe. Since our last update, Phoebe has been doing remarkable and her lively spirit continues to inspire us all each and every day. She is still coping with daily sickness and testing positive for the Norovirus. Her bloods levels have been up and down and Rob has shared with us his delights seeing Phoebe’s progress each week and the downside being a few concerns regarding her weight gain which has been very very slow…..I, on the other hand have had absolutely no problem in this area and have put on enough weight for the two of us….so the Special K diet starts Tuesday….after the bank holiday weekend of course!!! :o)

Phoebe’s bloods are holding up well and without going into too many specifics of the cells, Rob Wynn our Consultant in Manchester is watching them very closely due to the fact that Phoebe’s own stem cells have started to increase in number again, this is a fairly familiar scenario but Rob is continuously monitoring the results and keeps us updated each week at clinic. He remains very positive for Phoebe’s future outlook and once she has started to increase her weight and shift the Norovirus we can maybe then begin to relax a little. Phoebe still has the Hickman line fitted into her chest and I have to say this has been a real Godsend when we think of how much blood the hospital have taken over the last six months, it has made the whole procedure far less stressful….Phoebe takes great delight in helping the nurses by choosing which line she would like them to use first etc.

We continue the daily rounds of tube feeding since Phoebe’s appetite has not yet returned and this may still be due to the Norovirus. She complains that her mouth has a funny taste and therefore doesn’t want to eat but due to the fact that she has also had to contend with a bout of thrush through her system you can understand why, bless her. Lynette our dietician has been supporting us alongside Rob and continues to allay our concerns by reminding us that all children especially around Phoebe’s age who have gone through a Bone Marrow Transplant have trouble with their appetite but reassures us this will return normally, its just a matter of riding this time and continue to press on with the tube feeds. On our last visit to the clinic, Lynette and Rob decided to change Phoebe’s feeds and increase the calorie intake which is like going from full fat milk to condensed milk I guess. So far Phoebe has taken to it relatively well even though she continues with some sickness.

Phoebe’s immune system is still low but continues to strengthen each day, therefore, we are still in semi-isolation avoiding crowds especially indoor areas and close contact with children. Having taken good advice from Rob and the nurses at the hospital we decided to head down to join in for the annual Rhodestock camping weekend, this time in the very beautiful Wye Valley area which is in the Forest of Dean…and is well worth a visit. Ade, Phoebe and I booked ourselves into a local hotel this year and for the first time in a long time we were just so thrilled to be there, out in the open air absorbing the warm sunshine and enjoying just feeling relatively normal for a change. Phoebe absolutely loved every moment especially having such freedom at last; it did her and us all the world of good. Everyone helped to make it a wonderful much needed weekend so special thanks to Heidi and Iain and everyone for such warm hospitality and all the hard work that goes into arranging the weekend. It was really lovely to catch up with all the children too even though we had to keep a distance with Phoebe. They have all grown so much since our last trip to Rhodestock…we look forward to catching up for another social soon guys xxxx

Throughout our time in Manchester during the Bone Marrow Transplant we had some work carried out on the house, there were a few jobs that were still outstanding and would still be in 10 years if we hadn’t pulled our finger out…as they say…..so after the camping weekend we had arranged for them to be completed but this would mean that we were unable to stay at home due to the dust etc. We decided to just relocate not necessarily taking a holiday as such but to have a change of scenery for the few days needed to complete the work. We found ourselves on the east coast in a tiny fishing harbour called Staithes. As we were unable to visit the touristy areas having to avoid any crowds etc, we were just content to enjoy the view of the harbour outside our back door and breath in the sea air which rejuvenated us and especially Phoebs. I looked forward to taking my laptop (as I am now temporarily doing some work from home) and settling down at night to relax and do some work but unfortunately we had absolutely no signal on either of our phones or laptops, this being another reason for not updating you all for a while. So Ade, Phoebe and I took the opportunity to enjoy some relaxing walks and fill our lungs with the refreshing sea air…it was well needed and did Phoebs the world of good.

So, that’s been us really and up to date we have just been at home dealing with the regular daily regime of tube feeds and medicines which can be exhausting. Ade has been well and is hoping to return to work very soon. It has also been nice to begin my return to work, spending a little time in the office and attending a very enjoyable Redstone Corporate day at Keele on Monday, this being another sign that our lives are starting to return to a little normality. It felt a little overwhelming to begin with as it has been some time since I have spent time away from Phoebe and then thrust back into the corporate environment with so many people. It was great to see my colleagues win awards for their hard work and effort especially over the last year, everyone made me feel very welcome and I felt extremely blessed to have received the support from the team during my time away from work. Thanks everyone for your kind words of support and encouragement during Phoebe’s recovery, bless you xxx

A few messages tonight……Congratulations to Helena, Dale and Lucy for the wonderful safe arrival of their new son and baby brother Joseph. We hope you have some restful sleeps and look forward to meeting Joseph and for that coffee we’ve promised soon!!

Congratulations to my God-daughter Eve and Madeline on making their first Holy Communion on Sunday, it was a pleasure to be a part of this special celebration. God Bless you both xxxx

Very special birthday wishes to Marge who is celebrating her birthday tomorrow….Happy Birthday Nan xxxx

Special thanks to our Mums and Dads, Nan and Ed and all the troops for all your help we do so much appreciate everything you are doing for us. Xxxx

Thanks to my girlfriends for helping to keep my sense of humour….and to all the guys for looking after Ade, you are all amazing and we count our blessings to have you all on this journey with us!

Now as this blog has taken a little while to write tonight, I will say goodnight and I will ask my personal techie to attach some photo’s tomorrow evening as we have a busy day ahead…

So for now folks…thanks for being so patient and I look forward to updating again mid-week.

May the Angels keep you all safe, be open to their guidance……watch out for their sign of a white feather!!

Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx