A busy day here in Manchester...

Happy Friday Everyone,

Hope everyone is well and looking forward to the weekend..anyone have anything nice planned? Let us know as it’s nice to hear what’s happening with everyone.

Tonight, there is a lovely atmosphere in the parents room as we sit and chat about our day and I’m currently sitting with Carol whose daughter Kia has received her Bone Marrow Transplant today...Congratulations Kia and wishing you all the very best for a speedy recovery.

Phoebe has had a really busy day which started out with another appointment for an EEG. For this test Phoebe has probes put onto her head which will record any abnormalities in particular relating to the visual disturbances, having had two previous tests lasting for 20 minutes, today’s test was for 4 hours. We had put the probes into place whilst in the neurophysiology department and this gave us a little time together outside the ward. Olga accompanied us back to the ward with the monitoring machine in a pouch, Phoebe coped really well and had to have a little netting popped onto her head, she looked like a little munchkin out of The Wizard of Oz, bless her!! (I have taken picture which may be used for future bribes when she is a teenager!! )

Along with the EEG, Phoebe has begun a stronger chemotherapy called Etoposide today and this is given through her line for around 4 hours too. During this time Phoebe has happily relaxed watching her favourite Peppa Pig whilst merrily munching away on her oatcakes with cheese and current fad of turkey and cranberry sandwiches. Now for all you folk over there in the states, this could be a new taste sensation, there is no doubt our Parsnip will show you how it’s done properly!!

One of our aims this weekend will be to try and get Phoebe back on her feet a little more, she is still a little wobbly but seems to be more steady each day and we have noticed this more whilst she is sitting up. As it’s only been a day since she had the Hickman Line fitted she is invariably sore especially around her neck where the line is first inserted. We are managing to hold Phoebe very gently and she regularly tells me if it’s painful. Some of you have asked if Phoebe is asking what is happening and from day one we have and continue to explain everything, she lets you know when she’s heard enough and needs to rest. Phoebe is acutely aware of her surroundings but we endeavour to reassure her and make her feel as comfortable as possible. We have approximately five different medicines to give her twice per day and I have to say that she is incredible with taking these especially as they taste just ghastly; again she never ceases to amaze us with her resilience in coping with this daily regime.

The ward staff have been fabulous and it’s very strange as we look around and wonder if some of these folk have actually go home, the days seem to role into one. Tonight we have Helen and Jessica looking after us, they have such an attentive caring manner, we know with all the staff here, we are in good hands. Thanks to Jane who has been with us today, you have been a star. Phoebe has been making Jane laugh quite a lot especially with her quips and comments and she has seemed a lot more like her old self.

Today we have had some lovely visits from our dear friends at Treetops – The Donna Louise Hospice, it was nice to be able to introduce them to the staff here namely Rob and his team along with Angela from the Family Support Unit. Angela has been with us since day one of our time here and its lovely to still be in touch likewise with so many of the specialists. Eleanor has been on our mind constantly since we were admitted as there have been many painful reminders as we look back and reflect on our time back in Pendlebury.

We have also had a visit with our lovely friends Vicki and Gaz who have made the trip over here, so thanks guys it was great catching up. This week we have had no shortage of visitors which has been great and this is helping us immensely, we know it helps Phoebe when she sees regular faces, especially the ‘Troops’ and her God-parents and friends. Thanks for making the trip. xxx

Thanks so much to all our family (the troops) and friends for all the caring and thoughtful texts each day, its very humbling knowing there are so many people thinking and asking about Phoebe along with the wonderful gifts we have received onto the ward. The nurses enjoy bringing the post and have been quite envious it’s not for them!!! You are all too kind xxxx

As its getting quite late now and I promised myself I’d be in bed by 11.30pm tonight, feeling quite tired as I had a late night last night having enjoyed a curry with our dear friend Susan, so for now folks....

Thanks again for the wonderful comments and positive response for Phoebe’s Blog and we look forward to catching up again tomorrow.

Rest easy dear friends...

Much love

Lynn, Ade, Phoebe and Spirit Eleanor xxxx