Transplant Day +11 - The Road to Recovery

Evening All!!

Welcome and thanks for joining us for another update!!

Wow, only two more sleeps till Santa!!

After a fairly restless night (I must have heard every bleep of the machines!), Phoebe awoke this morning quite upset which is most unlike her. Of course we can expect all kinds of changes to happen with what she has been through.

It seems Phoebe has had a sore tummy today; this may be due to the mucositis. As she has had her blood transfusion she improved during the day but later this afternoon started to be a little uncomfortable. At breakfast Phoebs wanted to feed herself; she loves 'Cheerios' and had a little toast too. At lunch we ordered some creamy mashed potato, broccoli and peas with yummy cheese sauce. Again she tried a some of this by herself and it's such a good sign that she is still interested in food, but due to the mucositis she can be a little sick after. We are still encouraging her to eat at regular meal times and just need to work a little more on her drinking.

Phoebe's energy level increased today and she just wanted to play and watch Iggle Piggle. We laughed so much today as she's so entertaining and has me in fits of giggles when we weigh her in the mornings. She happily sits on the weighing tray and pretends she is in Iggle Piggle's boat; it makes her laugh when it wobbles!! Phoebe is weighed each day and this has been consistent with her level of fluid intake.

Our nurse Jo came to join us today as she has been off for a few well deserved days. It was nice to see her back and some of the nurses are trying to get their holidays in before Christmas so we have had a few different faces popping in. Phoebe is bringing a smile to all the people on the ward from parents, nurses and other staff. Our Ward Clerk, Ann is lovely. Phoebe remembered her name even though she has been in isolation for nearly two weeks so when she saw Ann this morning and shouted to her you could tell it really made Ann's day.

The nurses really enjoy looking after Phoebe as she is so responsive to them all and we enjoy the banter, especially with Sarah when she starts her ‘nagging’ (all positive of course, think she’s been collaborating with Gary!!). Sarah always pops up to see us each morning and before she leaves for the day, she enjoys her work but I bet she would just like to stay and play with Phoebe all day!!! Rob is on call this week and popped by to reassure all is going very well but we have a long way to go. One of the most important things for recovery of something like this is not to rush it and we are just taking each day at a time. We will return home when the time is right for Phoebs.

As it was Monday, Rebecca the music specialist visited the ward (see video clip above) and it was great to see her for the last session before her maternity leave. Phoebe enjoyed her session today but seemed a little tired; there were lots of instruments to choose from but the Cabassa is still her favourite!! Ade was glad to be with us today and joined in the song with his fine voice [Not! - Ade], he specially requested ‘Alice the Camel’ for his Mum Gwen as she couldn’t be with us today. By the way, he does a very good ‘Mac the Knife’ as is available for hire – good rates mind!!! Welcome to the blog Rebecca and on behalf of Phoebe and all the family of Bloggers, we wish you and your Family all the very best for festive season and for your new arrival.

Can you actually believe it….NO TROOPS TODAY, aaarrrgggghhh!! We missed you all so much!! Mum and Dad had to catch up on some things and sort pressies to bring to the hospital, oh and feed the fish!! Gwen, bless her, has a case of Laryngitis. I spoke to her a few times today; she is ok but does sound like she’s inhaled a full tank of helium!!! Thank goodness she has a great sense of humour because she sounded like a little squeaky mouse on the phone and we were giggling as we tried to have a serious conversation. I’m sorry Gwen, I’m not laughing at you, but with you of course!! Even as I write this I’m remembering it and have to stop myself…hope you are feeling better. We’ve missed you all today and look forward to tomorrow!!

Didn’t manage to get out for my walk today as it was that fine rain that soaks you… ‘ c’mon now…everybody in..it’s spitting!!!’ By 3.30pm I had a touch of cabin fever and just had to get outside. I realised that I hadn’t stepped foot outside the room since 1am!! It was great to sit on the bench outside and catch up on a few calls. It was lovely talking with you today, Margaret and Sandra, and thanks for your lovely words of support.

Phoebe took a while to settle tonight (see video clip above!) but she is now fast asleep. I have completed my task for today and pleased to say, I have written our first letter to the Donor and will give this to Sarah to forward onto the Anthony Nolan Trust for her. We are not sure if our Donor has any information at all about Phoebe but can you imagine what it’s going to be like when we meet! It’s a long way off yet but the thought if evokes all the emotions imaginable.

Hi Parsnip, in answer to your question regarding the blood transfusions, Phoebe has had a couple now which have all come from the same donor. This is very much a supportive procedure when her blood counts are showing at a certain level.

Hi Rachel, thanks for your question and sharing your story today. I’m sure Spirit Sam will be pleased to receive his Christmas greetings and he’ll be around watching over his sisters!

Throughout this journey, we have been very lucky and having this room has been one of the blessings. We are able to stay in this cubicle for the entire duration of our stay and this makes everything so much easier as Phoebe is really settled. We have an en-suite and the facilities on the ward make it feel as homely as possible.

Thanks for the call Susan xxx

Well guys, another day is done. Thanks to everyone for your calls, txt's and messages. We do so much appreciate all the support. We wish you all a restful sleep (if you Bloggeroonies can with all the excitement!!).

For now….

I would like to dedicate this angel quote to my Uncle Jimmy. I ask my angels to look after you and keep you safe xx

‘And the Angel said unto them, Fear not; for, behold, O bring you
good tidings of great joy, which shall be to all people.’

With love xx
Lynn, Ade, Phoebe and Spirit Eleanor xxx