Transplant Day +117 - The Miracle Journey Continues....

Good Evening Dear Bloggers….

Thanks for joining us on this chilly evening, we hope everyone has had a good day enjoying the sunshine!!

Our day has been a great one…well I say great…its Tuesday and as you guys may know by now…its clinic day!! Our trip to the hospital has been very positive with the good news that all the blood levels are doing ok. The recent treatment to erradicate EBV (Epstein Barr Virus) does have the unfortunate side effect of reducing the immune system. However, this is to be expected and we are now addressing this with doses of immoglobulins which help to boost Phoebs’ immune system up to more acceptable levels.

Phoebe still has the Norovirus and we are reassured that this will eventually clear and her appetite will return to normal. It is comforting to hear that this is a familiar trait with post Bone Marrow patients in recovery, the appetite being the final effect to return. We often talk to other parents in clinic and they too reassure us that their children are back to eating again, particularly when the amounts of medicines are reduced.

Phoebe continues to have a number of medicines which consist of anti-virals, anti-fungals, immuno-suppressants, potassium supplements and anti-sickness. We have gradually removed some of the medicines in the last couple of months but still has a staggering amount throughout the day. This may also be a reason for her lack of appetite and daily sickness. Over the next few weeks as the lymphocytes start to increase, we will reduce the medicines again as the white cells will start to do the work of the drugs…it will be a testing time but nothing we can’t overcome….with the amazing support we have both from the hospitals and here at home.

Now talking of the hospital, we arrived in Manchester today and were so surprised to be told that it was Sarah’s last day in clinic. Sarah has been covering the post of Bone Marrow Transplant Co-ordinator for a lovely lady called Jo Page whilst she been on maternity leave. We were sad to say the least and had to hold back the tears, it was really overwhelming as Sarah has been with us throughout the whole of Phoebe’s journey and has been a tremendous support for us and Phoebe, she will be sadly missed. We will stay in touch and see Sarah from time to time on the ward as she returns to her original position of Sister on the Bone Marrow Unit. We would like to Thank Sarah for the wonderful care she has given to us, always going the extra mile. We also welcome nurse Jo back and look forward to our next meeting in clinic where we will be able to chat more about our experience with Phoebe throughout her transplant and incredible recovery so far.

Phoebe has been on great form today wanting to be out and about in the garden. We have begun encouraging her interest in the garden by taking her to choose some pots and planting the flowers with her, having been cooped up inside for months, you can see she is thriving from the fresh air. The grandparents often take Phoebe for a short walk up and down the crescent, always returning with lots to tell us about everything they have seen. She is particularly fascinated with birds, aeroplanes, the moon, the numerous daffodils along the crescent and the neighbour’s cat who she says sits patiently and waits to be allowed in for his ‘din din’s’, she has sussed him out already!! One of Phoebe’s new sayings over the past couple of days when trying to get your attention is ‘excuse me, Mummy!’ whilst tugging gently on my leg and she says this so politely with her sweet little voice too bless her!! Phoebe continues to amaze us each day and we look forward to the next few months where we can return to normal everyday life getting out and about a little more.

Just a little mention tonight for the team at Abbott Laboratories who supply us with feeding bottles and tubes. Chris and the team have provided excellent customer service keeping us topped up with supplies. Bless you….Thanks Guys!!

Hi to all the crew down in Bristol. Thanks Iain for your message…We have spoken with the team in Manchester today and they have given us the all clear to come down for Rhodestock, so long as we stay in a B+B (as you can imagine Ade is so chuffed being a fair-weather camper!!!) this year and still need to keep a little distance but we are excited to be joining you all again….sadly not celebrating a wedding, you got me good an proper with that April fool!!!….but seriously c’mon now won’t you consider it Jed, getting us all excited!!! Can you let us know the new campsite details to book local accomm. Hope all is well with you guys…xxxx

Thanks so much to everyone for your lovely comments, texts and messages of love and support….bless you, it keeps us going!!!

So team…we’ll be back with you all at the weekend but for now, enjoy the rest of your week, take care.

For our nurse Sarah...you are an angel...bless you for your wonderful care. x

’Angels can be a comforting presence when life is so unpredictable, walking with us, waiting for our call.’

Rest easy..much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx