Transplant Day +36.......A superb week...

Hi Folks,

Its nice to be back and thanks for your texts and emails asking where we have been this week having taken a few days out from writing. Hope all is well.

Apart from the drizzly wet days it's been a brilliant week and we are gradually seeing Phoebe returning to her old self. She has been keeping us entertained and just this week Phoebe turned a corner especially with her confidence. She astonishes us with her memory reminding us of moments that happened over 12 months ago, this in turn boosts our confidence and reassures us that there appears to be no evidence of any damage done when we saw the initial beginnings of HLH in her brain just a little over two months ago. Wow when we say two months ago it doesn't sound like a long time at all considering everything Phoebe has been through and how scary those times were, it seems like a lifetime ago!!

From our last update on Monday Phoebe has continued to improve throughout this week and again her taste buds are changing although the appetite is still slowly recovering, I guess it will take some time and won't really helped by the amount of medicines she is taking. Talking of medicines, Phoebe has settled into the routine again of taking them, however, she is mastering her style of persuasion and stalling techniques...and sometimes if in doubt just makes a run for it!!

Ade and I have felt a little more confident to have time out for ourselves although one of us is with Phoebe pretty much all the time and especially during medicine time. Taking a look at the medicine chart it can appear very intense and sometimes overwhelming so we are very aware not to leave any responsibility with the to give Phoebe her meds...we're sure it won't be too long before Phoebe is marching herself into the kitchen and preparing them herself!!!

With this build in confidence I decided to return to work on Wednesday and thoroughly enjoyed seeing my clients again, receiving the warmest welcome. Working freelance has given me the freedom to concentrate on Phoebe and her recovery and given many other family situations, I consider myself extremely fortunate to be able to do this.

Wednesday evening found us at our favourite restaurant with our old friends Chris and Leanne, didn't feel too guilty indulging on pecan pie following a good workout at the club with the new Zumba classes. It will be good to see a few of you down there, come have a go!!!

Thursday morning we had a visit from our Respite Nurse Lucy who comes to our home to help and spend some time with Phoebe, we all enjoyed time with Lucy and look forward to catching up with her again next week. Whilst getting ready for the day on Thursday, we noticed a rash had appeared all over Phoebe's torso. This looked like it could be GvHD (Graft verses Host Disease). This is where the incoming cells attack the host and we now see the effects of this with the rash. It doesn't appear to affect Phoebe, however, we contacted the BMTU and took Phoebe over to see Rob. He confirmed it was GvHD and has started Phoebe on some steroids. We are just awaiting the food cravings to develop, so far its been pasta characters in sauce....but not Noddy as he's for boys (apparently!!!).

As I mentioned earlier, its been a busy week and Thursday started with Ade and I having a quick wash and blow dry in the salon at the Tollgate with Maria before being filmed at The Donna Louise Hospice in Trentham. Pam our counsellor contacted us as the team from Comic Relief were making a film about the hospice and wished to speak with a couple who had received help through the counselling services following the death of their child. Naturally, whenever we are able to help especially Treetops, we are pleased to help.

Thursday finished with Ade heading out for a few beers with the lads whilst Helen and Estelle headed over here for a couple of hours...thanks again for the tasty cup cakes Estelle, look forward to catching up again soon.

Phew, what a day on Friday with all the rain..we took this day to chill and head over to Margi's, it's been a really great week which finished off with a curry out with the girls last night...super end to a fabulous week.

Enjoyed a pyjama day today with Phoebe making pancakes...perfect!! Mum popped in today, and we all had manicures!!!

Heading off to The Monastery in Manchester with Andrea tomorrow for a Mind Body and Spirit Fair so will update again on Monday following our visit to the clinic...

For now, thanks once again for keeping up to date with us and I look forward to catching up next week.

Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx