Transplant Day +140 - With some good news....

Hi there Bloggers!

Hope all is well out there and thanks again for joining us.

We seem to have spoken about the blog to so many people this week and it still stuns both Ade and I on the sheer amount of bloggers out there keeping up to speed on the latest developments from Phoebe’s incredible recovery following her bone marrow transplant. So a great big thank you for the constant amazing words of support we receive from you all and the fact so many of you take the time to check the blog and follow Phoebe’s journey.

So…since Sunday and following our appointment this week, we again find ourselves having good news and positive gentle steps towards Phoebe gaining a full recovery. Something my Mum said to me today…”just think…this time next year you will be preparing Phoebe in the next few months ready for school!!!”…can you imagine my reaction? When I have met with friends at the playgroup we often talk about the fact that all our children will be at school together and how quickly it will come around ….doesn’t time go fast as you get older!!!

Anyhow…where was I….in the recent weeks we find ourselves moving into new territory with Phoebe as she is now older than Eleanor was when she passed. It’s a reflective time as well as an incredible experience watching Phoebe develop and time seems to be passing so quickly we feel the need to absorb each and every experience given to us. It also feels time now to start focusing on regular everyday things such as eating and increasing Phoebe’s appetite along with quality play time as it’s been a long time focusing on Phoebe being in hospital and her recovery since.

Phoebe continues to amaze us each day and following our clinic appointment Tuesday it feels that somehow we have turned another corner with her…so to speak.

Rob returned from his recent trip to Oz and by all accounts had a thoroughly good time and so well deserved too, it was great to see him again and he too was pleased to see Phoebe looking so well. Ade managed to have a good chat with Rob and it was decided that we should reduce Phoebe’s medication again. Due to Phoebe’s blood counts increasing Rob decided to stop four of the daily drugs and this currently leaves just two daily doses and a second weekend dose of medication which is a huge leap in progress. Now speaking truthfully, hearing this made me feel very nervous but I absolutely trust Rob’s judgement without question and now just hope that Phoebe keeps well and her immune system is able cope with the daily surgence of viruses and bugs out there. We are still in semi-isolation and this will continue until we are told otherwise. Now without going into too much scientific detail Rob explained that the bloods results are good but they are watching them closely as Phoebe’s own stem cells have started to increase again. We hope and pray that these will even themselves out and she continues on her steady recovery.

On a very positive note this week…we have had our first negative result from the samples given in detecting the Norovirus. A further sample will be tested to check two concurrent results but at this moment in time we hope to have seen the last of the Norovirus. Both Ade and I have learnt to be patient as we have no control on how quickly Phoebe can heal from all of this only hoping that her sickness stops soon. As some of you who have been with us from time to time will know, everything can change within a second especially dealing with the sickness but this seems to have lessened over time, as its so unpredictable we are kept on our toes constantly!!

Phoebe’s appetite continues to be somewhat challenging especially over the last few days but over the next few weeks this will hopefully begin to pick up particularly when we remove the naso-gastric tube for good. Speaking of the ng tube, Ade and I have had a few busy nights just recently and yesterday was no exception as we awoke in the early hours hearing a loud cry from Phoebe, bless her, she must have caught her tube and pulled it out as the tape came completely off her face, she was quite upset but after some good cuddles she calmed soon settled off. When this happens, depending on the time and day, we contact our community nursing team who do a sterling job by visiting us at home to re-insert the tube. The procedure is not pretty and Phoebe has just recently really started to protest with a few kicks and screams…just becoming a little assertive I say!!!! She does incredibly well as its really uncomfortable having it re-inserted but we assure her it’s a quick procedure and she often reminds us to ‘do it quickly!!’ and then reassures herself saying how brave she has been….and for everything she has been through she is so so brave and funny keeping us all smiling even during those difficult moments!!

This week has enabled Ade and I to have a little time at out and visit work with Phoebe spending the afternoon with Gwen at the Tollgate. Its always nice to see the guys at work and the company I work for called Redstone have been an incredible support to me since finding out Phoebe required a Bone Marrow Transplant and this has continued throughout. Its now time for me to start integrating myself back into working life and again the company have been incredibly accommodating by allowing me to work from home for a short time before I return to the office. This is just another sure sign that we are back on the road to normal life, something which Ade and I have come to realise is so precious and helps us to appreciate each day.

Its been nice to catch up with a few friends this week and as always this makes me truly thankful for the wonderful friends and fabulous support we have. Good to see you Helen and thanks for helping keep my sense of humour!!

Thanks to our family for looking after us constantly, we are so so thankful and truly blessed to have you in our lives.

Special wishes for our little cousin Alfie Lymer who is celebrating his birthday tomorrow, have a lovely time sweetheart and we’ll see you over the weekend!!

Its been lovely to catch up with our friends in Ireland this week and tonight I’d like to dedicate the angel blessing to Tom. Tom is a warm, thoughtful, true gent who has along with many others over in Ireland said prayers constantly for Phoebe since she has been born and for this we will be eternally humbled and grateful. This time it is our turn to say prayers for Tom as he has been unwell for a little while now and we send our prayers that you will feel better soon Tom, all our love, prayers and thoughts to you and all the family.

‘The plants breathe out and we breathe in, not noticing the exchange. And so we walk with angels, seldom noticing the company we keep’

Pictures to follow tomorrow....

Rest easy folks until our next update….

Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx