Transplant Day +52......The last few days....Part One

Hi Everyone,

Its been an enjoyable few days since our last update on Tuesday. This is part one of this weeks update, part two will be with you tomorrow!

Hope you are all well and thanks for popping by to update on Phoebe's progress. Welcome also to all our new bloggers joining us too!!

Phoebe continues with her amazing recovery and her appetite remains steady which is more than we could have hoped for given the memories from the last transplant. She loves a good sandwich and has started on a recent craze of ham, cheese and cucumber and would happily eat this for breakfast, lunch and dinner!! For the moment we are concentrating on Phoebe enjoying what she wishes and just trying foods again especially which are rich in potassium....hence to say we are feeding her up with banana's and she is keeping us entertained with her monkey business just like George her huge Cheeky Monkey whom some of you may know!!

Along with a good appetite Phoebe continues strong with her medicines and has even started to take them herself! For a few more months she continues on a range of anti-biotics and other blanket drugs to assist her immune system whilst it is establishing. Results from blood tests taken last Monday show that Phoebe's immunity ratio remains 100% donor cells although we are aware this may change and reduce...fingers crossed Phoebe's immune system will accept the new stem cells and the graft will eventually stay this time.

Today has been clinic day and Rob is incredibly pleased with Phoebe's progress. Bloods are showing steady in their recovery and he couldn't wish to see anything better. This of course lets us just release a small wave of relief although we live with the reality that everything can change just when you are least expecting it!! Rob has now reduced the Prednisolone which is a steroid taken orally, this controls the GvHD (Graft verses Host Disease). We continue with all the other medicines and will eventually take each of them away as the recovery continues and Phoebe's immune system strenghtens. The Ciclosporin which is the immuno-suppressant therapy will slowly be reduced following the next 50 days of recovery where we hope this graft has had time to settle and is finally here to stay.

Each visit to the hospital brings its own unique experience and today the clinic seemed quiet in comparison to the buzz and chatter we felt last week. Phoebe feels very comfortable at the hospital and you can just see her confidence growing especially now she is feeling better and more like her old self. Rob always looks so pleased to spend time with her each week...bless her, she even ran into the corridor and asked Rob "how is the football this week?" Rob being a Liverpool supporter couldn't help but smile and said.."well, it could be better, thanks Phoebe!!".

Talking of confidence, something we have experienced over the weekend with Phoebe was becoming aware that she is a little self-conscious about her image, probably more than we had even given thought to and at three years old you may think a child has far more things to be interested in! Ade was asked to go to the Stoke match against Bolton on Saturday by an old friend Darren and being as I have had a pampering weekend recently, its only fair Ade should have some time out although can't imagine it was as relaxing shouting in excitement/frustration from the terraces!! Anyhow, Estelle came over for dinner here and shortly after Ade arrived back with the boys, they made themselves comfy in the kitchen ready to devour their Subways. Phoebe was really happy to see Ade and the boys and was running around exciting, maybe even showing off a little!! until Estelle and I noticed that Phoebe had become really quiet, she came into the sitting room and picked up a picture of herself, she went into the kitchen and showed the boys. When I asked why Phoebe she was taking the picture, she explained that she just wanted the boys to see what she was like when she had hair....Aaah, bless her, there have been many moments where Phoebe has stopped me in my tracks with some of the profound things she says but this time my heart sank in a way I hadn't experienced before, a feeling I will never forget....

Throughout the treatment process, there have been a couple occasions where Phoebe has appeared to be concerned about her image. Whilst the preparations were under way for this transplant, you may remember we decided to shave Phoebe's hair as it had started to come out in large clumps. After, I remember Phoebe stroking her hair and saying with tears in her eyes that she really wanted her hair back but this was said with such sadness in her sweet little voice, it was just one of those moments that will stay with me for ever. After a while she was distracted from this by the list of positive things to think about without hair...one being not having to wash as often!! We always reassure Phoebe that with or without hair she is absolutely beautiful, everyday reminding her of how much it has grown so far...bless her!!

As I said earlier, each clinic appointment is different and today Angela pop in to our treatment room. Angela Blenkinship is a truly wonderful lady who oozes calmness, the energy radiates around her and instantly makes us feel relaxed and comfortable. Angela works within the Family Support Unit at the Royal Manchester Childrens Hospital and has been with us following Eleanor's and Phoebe's journey since Eleanor died in March 2007. They are a brilliant team and do some really special work with families, supporting them through possibly the toughest periods in their lives both from practical and emotional aspects during and after their stay in hospital.

Each year the Family Support Unit invite us to a memorial mass at Salford Cathedral, their skills, experience and awareness show their understanding about loss. The attention to detail for this event is superb and each year they reassure all the bereaved parents that each child is remembered, through their choice of songs, poems, prayers, candles, flowers for each mother and reading all the names of the children. This is a special event where we can centre all our thoughts on our children and offer them our thoughts and prayers along with the opportunity to catch up with some old friends and support the families joining us for the first time.

Another member from the support team is Adele, she has helped us with the practical sides of our visit, even just by popping in each day and seeing how things are to arranging accommodation for the families, the team are an invaluable asset to the hospital. So thank you to all everyone at Family Support, you have been a great source of strength.

Now, there are many other things I have to tell you about but will save them for part two. So we'll say goodnight as its very late and catch you again tomorrow. xxxxx

Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx