Transplant Day +85 - An unexpected trip to Manchester...all is well though!!

Well…Good Evening Bloggers…

Welcome and thanks for joining us on this next instalment of Phoebe’s progress, hope you are all well and enjoying your Friday night after a busy week.

Tonight I find myself writing the first part of the blog from the car on our way home from the Royal Manchester Hospital; goodness me… technology hey and of course being a woman…making good use of the time too as it will be fairly late by the time we arrive home. During a relaxing morning, we received an unexpected call from Sarah our BMT Co-ordinator to inform us that Phoebe’s bloods have been monitored and are showing signs of Epstein Barr Virus (EBV).

In general most of us carry the EBV virus and this can show as a common cold with flu like symptoms but on initial infection if our immune system is low this can fully develop into glandular fever. The incoming donor stem cells already contained this virus and it has been detected significantly early in order for us to treat with maximum effect.

As I mentioned earlier, Sarah called and asked us to head over for around 3.00pm, at the time I was taking a walk with Mum, needed to leave the house as cabin fever was setting in, it’s just been too cold to take Phoebe out these last few days!!

Ade had a brief chat with Sarah; she and Rob are not too overly concerned as they have been monitoring the bloods and were ready to start treatment once the virus started to show itself. How incredible is that, EBV was detected last week, they wait until bloods show a certain level then treat immediately. So often we look back at certain things that have happened and realise we should have recognised the signs in front of us as she has been quite tired this week but hopefully, now Phoebe has received her treatment of a drug called Rituximab, this should help to deal with this virus and we shall ask more on Tuesday.

Here we are with Shiva, he has looked after Phoebe on the Unit and just popped in to say a quick hello.

This is Allison who has been looking after Phoebe today, she is preparing to take the lines down as Phoebe finishes her IV meds. And a delighted Ade as we are allowed home…….

Our sleepy princess….all ready for her bed at home...

Phoebe has been quite well this week but her appetite remains non-existent, we need to be patient as this will return to normal soon. She continues to test positive for the Norovirus and again this will also take time to clear. We soldier on with the daily regime of the tube feeds and rigorous drug therapy but this is an incredible small price to pay to have her here at all, never mind being at home even!!

Our wonderful news for this posting is to let you know we have received a lovely letter from Phoebe’s Donor. It was just so incredible to read and it appears that she may be an artist. Ironically, some time ago I brought a beautiful card with a picture of young girl with blond hair sitting next to her cat facing away…this image reminded me of Eleanor and Casper and as it was the anniversary of their passing I wrote a small message in it for them and…….astonishingly the letter from the donor contains a picture with a hand drawn picture of a cat just like in the card….wow, it blew me away…take a look….now that is what us girls term a ‘happenstance!!’

As it has been somewhat chilly this week, we have enjoyed just ‘being’ at home with the folks, drinking cha (as Phoebe now says!!) staying warm and focusing on keeping Phoebe healthy.

Here is our first squirrel visiting the bird table having a good munch.

Phoebe just loves a good game of hide and seek. Coming ready or not.....

BOO!!

A big cheesy grin for all you bloggers!!


Follow me Granddad…..

You will be pleased to hear that Andrea called first thing on Wednesday morning to say she would be joining me whilst Ade was at the match and I have to say,

we had a truly fabulous evening, with a tasty dinner and a good girly catch up…perfect, so thanks for joining me Andrea, it was lovely to see you hun enjoying a good giggle, a real tonic catching up xxx

I am pleased to let you know that Auntie Winnie is doing really well, bless her, she is having lots of visits from her family and neighbours to help her through these difficult times, she is a lovely lady and is always full of fun, it will be nice to see her getting back to her regular trip out to church each week along with a good dose of the bingo!!

So guys….keeping it brief tonight, we are all well here and looking forward to the weekend, hope you all enjoy your weekend and thanks for all your continuous love, prayers and support, especially the comments on the blog too, it means so much to us all here

For Tracey, Chris and the Boys, thinking of you all, especially William, our prayers and positivity are flowing your way....may you be surrounded by the angels, much love xxx

Much of human history is marked by the presence of beings who help us to be more than we are. We call these beings angels. We look for their presence, but sometimes we forget to see.

For now folks rest easy, much love,

Lynn, Ade, Phoebe and Spirit Eleanor xxx