Transplant Day +7....1 Week since Transplant

Happy Friday Everyone!!

Hope you all had a good week and looking forward to the weekend before the big return to school, college or work following the summer break.

Its been another great week here in Manchester and Phoebe continues to amaze us with her bravery in dealing with the on-going medicines and treatment each day. It's already one week since transplant and even though every child and their recovery is different, Phoebe is doing incredibly well at this stage.

During this last few days, Phoebe has had some slight sickness but this is mainly after a bout of coughing. We also think that her taste buds maybe changing and this is common after chemotherapy where food/drinks can have a metallic taste.

Phoebe's general diet has reduced greatly after 24 hours of stopping the steroids and has been a direct contrast to when she was eating like a horse!! Its ironic ...we now face a daily task of compromising everything to just get her to drink something and to eat a few nibbles of a plain cheese sandwich even. Rob would like to avoid giving TPN which is Total Parental Nutrition fed directly through her Hickman line bypassing the usual process of eating and digesting. It provides all the nutritional formulas containing salts, sugars, vitamins, fats and amino acids which aid metabolism (easy digestion). We will aim to encourage Phoebe as much as possible to avoid TPN and general feeding through a naso gastric tube (tube into nose feeding directly into stomach).

There has been lots going on this week and we have changes here on the Bone Marrow Transplant following a ward inspection. All rooms are required to de-clutter to leave all surfaces and floors clear which of course is necessary to avoid items gathering dust and harbouring bacteria. We have today received a large cupboard to help with storage and thus providing a solution for any clutter!! We endeavour to keep things as tidy as possible but sometimes all homes get a little busy, especially when you are up to your knees in stickers, paints and general items to keep Phoebe entertained whilst being contained in one room for 24 hours per day. Its important for Phoebe to feel safe and secure and to show her that we are enjoying being here too and for the moment this is our home...hmm it actually makes me think though, if we can cope with what we have here...do we actually need everything we have at home????

Due to the new influx of viruses currently doing the rounds, the management here at the Unit has decided to limit any visitors onto the ward apart from nominated carers and patients who attend for appointments whilst still in semi-isolation. Even though it is nice for people to visit and see Phoebe through the window, we all agree this necessary and do all we can to prevent the spread of infections, especially as the children here need to be safe being immuno-compromised. We still look forward to visits from our friends and family and this gives us a little time away from the ward, helps to keep us refreshed.

Here is our chosen art work for today and this is from Hannah in Stoke, great use of recycling with the original picture of Phoebe. Thanks Hannah. See you soon.

Feeling pretty tired as Phoebe hasn't really settled and its getting fairly late so leaving it there for tonight and look forward to catching up with you all tomorrow.

Rest easy folks,
Much Love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx