Another positive day...

Good Evening Dear Bloggers,

How are we all this fine evening? Hope you are all well and thanks for popping by.

It’s been another positive day here in Manchester, with good progress from Phoebe Margi and an abundance of friends who so kindly made the trip over, thanks so much all of you.

So the day started out with a little apprehension hoping Phoebe would be able wait for her breakfast, lunch and dinner (that she would no doubt eat altogether)once she had woken from her anaesthetic. Phoebe needed to take some meds very early this morning as she would need to fast and have no liquids from 6am so we both felt a little tired when we first woke but gently fell back asleep and able to have a lie in until 8.30am!! Feeling much more awake today after deciding to put a couple of extra layers on me..realised how cold I have felt over the last two weeks, even though it’s not exactly cold in here.

The doctors called for her around 11.45am and she had been so good, as we made our way through the ward she became a little anxious because she now recognises the type of room. Until today Phoebe has been taken down to the main theatres which are much bigger but all the operating rooms look much the same. Today, Phoebe had her lumbar puncture and intrathecal medicines in our mini operating theatre on our ward...how good is that...along with our own dedicated labs to enable results immediately...it really is fantastic. Phoebe now knows she will be going asleep and got a little upset but I managed to get Phoebe to focus on all the things she wanted me to prepare for her when she wakes up, I gave her that many options, she didn’t have time to think and within a few seconds (and I mean literally) the anaesthetic has worked and she is fast asleep.

Now if Phoebe needs to fast for any of her treatments, we fast with her, its a little agreement that we set ourselves. Neither Ade or myself leave Phoebe’s sight to have a drink or eat any breakfast until she in theatre and we then quickly seize the opportunity to grab something to eat and drink because before you know it, Phoebe’s awake, sat up in bed and telling us what she fancies and we naturally want to be on the ball...heaven help us!! Aaah obviously I only say this in jest but we prepare ourselves and stand at the base of her bed ready to receive her requests and try to fulfil them as quickly as possible, it’s like being in a comedy sketch. This morning, it was cheese, cheese, cheese and yes....more cheese, just in a cup...with a spoon.....then it moved onto cheese with crackers, then her favourite sandwiches and well you get the picture.

We try and explain to Phoebe that it is her medicine that is making her think she is hungry but of course it’s a hard concept for her to understand because she really doesn’t want to know because she feels what she feels and that is HHHUUUUNNNNGGGGRRRRYYY MMMMUUUUMMMYYYY!!!!

As I mentioned earlier, we had an abundance of friends pop by today, Andrea and Bert came with half a dozen oatcakes in tow just in case we happen to run out in the middle of the night!!! It was nice to have some time with Andie as we took the opportunity to pop round to our local Cafe Nero not too far from the hospital. As we walked over there, we were joined by our dear friends Liz and Pauline. Liz Scott is a dear friend and mum to another of my friend’s Jo Scott.....Hi Jo.

Liz very kindly looked after us when we visited Lourdes in France earlier this year and came with Pauline who very kindly helps out each week at Circle Tots looking after all the mums and grandparents with a lovely cuppa. We all strolled round to the coffee house and literally talked non-stop, time stood still and everything felt normal...just for a while. Before long Ade called me to pop back as Phoebe needed the loo and will only go with me at the moment, bless her. We headed back and time had passed so quickly and before we knew it, everyone needed to head off to avoid the traffic. But before they left Andrea spent the next half hour looking after Phoebe and her food requests, even making a turkey sandwich and Andie is a veggie too....things you do for your God-daughter!!! Thanks Andrea for all your help today.

Within a few minutes of the guys leaving we had some more visitors...here came Owen, Michelle and Vicki. It was great to see them and Owen was so enthusiastic to tell us what he had been doing all day. We giggled and talked about Owen’s direct question put on the blog comments...’So, is Phoebe going to be ok or not’....well there is nothing like being direct Owen and that’s what makes Owen so special, he’s down to earth and straight to the point, no messing!!! Ade and Owen had some quality time together and Phoebe decided to join us girls in the family room for a cuppa.

We feel very humbled to have you guys visit considering the journey over here, it may not seem very far for some of you but we appreciate that not all folk like to travel on the motorway or drive the distance. So thanks to everyone who has managed it!!

Again another positive day, Rob popped by and is very pleased with Phoebe, we discussed the possibility of going home and maybe sharing some of the chemotherapy care at Cheethams but after some consideration Rob feels he would like Phoebe to be here just in case we need to run any tests and are able to get the results back quickly. We need to be on our toes to keep Phoebe stabilised and in the best possible health ready for transplant. Ade and I, having sat and reflected back on the last couple of weeks agree very strongly that given the grievous situation when we first arrived from Stoke, it would be unlikely that Phoebe would be here with us now.

Rob and his team have done tremendous work to get Phoebe well and where she is now. Managing this very rare disease and presentation with such humility and care, taking and respecting opinions from all of his colleagues and team in the hospital, around the UK and abroad, you can imagine how humbled and appreciative we are. It goes without saying that we have also received a huge abundance of miracles from the unseen power around us, there has been such a tremendous amount of positive thoughts, energy and prayers centred towards Phoebe that we can’t help thinking this also has an enormous part to play. So thank you to all of you out there, whether it’s in thought or prayer you have helped us to keep strong and stay positive with healing all round.

We are dedicating tonight’s blog to our dear cousin Gemma and her lovely new husband David, they tied the knot today in the wonderful historic town of Chester, with a beautiful intimate ceremony today they for sure will continue to celebrate throughout the week until their fabulous garden party celebration and hog roast on Saturday. Congratulations to you both, we are so thrilled for you, here’s to a wonderful future together. Wishing you all the very best in life...xxx God Bless xxx

Popped a few photo's on especially on for you Maddie...Hope you enjoyed camping in the garden xxxx

Rest easy dear friends, see you tomorrow xxx

Much love

Lynn, Ade, Phoebe and Spirit Eleanor xxxx