No More Chemo - Transplant Day Tomorrow !!

Dear Bloggers…..Welcome once again,

Thank you for joining us and for taking the time out to keep up to date with things here in Manchester. It's lovely reading the comments each day, bless you xx

Wow, how quick the has time gone, it's the big day tomorrow!!!
Our little sweetheart has done really well today and even though it's called a 'rest day' she started a long-term course of Ciclosporin. Phoebe has been really good today and we've had a few ups and downs, which are to be expected, and it is like being on a constant rollercoaster!

We started with breakfast and Phoebe ate quite well, mostly enjoying her cups of tea and dipping her toast in, and her Rice Crispies – oh know you know what’s going to happen here don’t you!!! [Sure Do! - Ade]. If Phoebe is showing interest in anything to eat or drink, we are embracing it and encouraging her.

The next hour or so after breakfast was a little challenging as we decided to give Phoebs a bath, she has washes twice a day, and we thought it would be nice for her. As she is attached to the machine we brought the bath into her room to give us a little more space. She was OK and relaxed after a little while; she didn’t really like her hair being washed today but I have to say it was a little bit of an ordeal to keep her Hickman Lines and their entry site dry. Bless her, she was patient with me xxx

Phoebe has had a little sickness today and this may be due to the taste she has in her mouth; it doesn’t help with having around 12 or so separate doses of medicines throughout the day and into the evening. She has the last doses at 8pm and 10pm so it's hard for her when we have to wake her up and then ask her to settle again. She is also having her nappy changed 2-3 times in the night due to all the IV fluids. We are working hard looking after Phoebe's little bum, bless her, but it has started to break down a little now. The nurses and doctors are helping us and reassuring us we are doing things right.

Ok…so the Bone Marrow Transplant due tomorrow.

Sarah our BMT co-ordinator (pictured) came to see us today and asked how things are. Sarah is lovely and has been a real help in answering any questions we may have. We talked with her today regarding the bloods and what counts we will be looking at and these are WBC (White Blood Count) that fight infections, Hb (Haemoglobin) carries oxygen around the body, platelets which prevent clotting and Neutrophils which fight bacteria. We will let you know how Phoebs gets on with these and if you could all think about these counts and willing them to increase after the transplant, that would be great…the power of collective consciousness and all!!!

Sarah confirmed that we have received a really good donor stem cell dose which will be arriving at the hospital tomorrow between 12 – 1pm and this will be delivered to Dr. Trevor Carr,the Consultant Clinical Scientist. Dr. Carr is very highly regarded and looks after the stem cells and performs incredibly complicated scientific procedures to get them ready for transplant. He will work on them for maybe a couple of hours and then bring the cells up to Phoebe's room. Phoebe will be given meds. for any reaction that could occur and there will be doctors on the ward and nurses in with us whilst the transplant is taking place. Phoebe’s observations will be taken every 5-10 mins during fusion and some of her oral meds will be transferred over to IV along with some IV feed. The infusion should maybe take up to one hour.

We have taken some pics. for you all today of Phoebe’s room; it’s very sunny and we are in the process of putting a few decorations up. We have been asked what address people can send to, you may send to the hospital if you wish or you can also send to my Mum and Dad’s house:
18 Congreve Road, Blurton, Stoke on Trent ST3 2HA.

Mum and Dad came today, bless them, and brought a lovely cottage pie along with sandwiches for lunch too - oh the joy, we are truly blessed. Both sets of parents are doing everything they can to help make this journey as easy as possible. Thank you all so much xxx

This morning, whilst Phoebe was asleep, we had some lovely gifts delivered into the ward from a previous transplant patient. They now fundraise each year and bring gifts into the ward at Christmas; what a lovely gesture. Phoebs had a plate, bowl and mug set with big ducks on them and a selection box…yum yum!

Whilst Mum and Dad were here some clowns visited the ward to entertain the patients. They came to our window so mum held Phoebe up to it, but she wasn't sure about them at all; even more so when they started to blow balloons up. However, they gave Phoebs a lovely heart balloon now that's on the TV that she has warmed to!!! The hospital really do make every effort to help make your stay as comfortable as possible. There is a lovely lady called Muriel, the play specialist on the ward, who brought some craft material and paper for Phoebe. With these we made a poster for her friends at Circle Tots.

Later this afternoon Phoebe became a little withdrawn. I think she was tired more than anything and just wanted a cuddle off her Nana, bless her. The Ciclosporin may have unsettled her a little although she soon fell asleep after having it. However, she was was really chirpy when she woke up. TEA, TEA, TEA…just in case we didn’t understand the first time. Ooh she did enjoy it, bless her, but who doesn’t….(apart from her Godfather, Jonathan, who hasn’t been well lately with all the coughs and colds about. We wish Jonathan, Helen and the girls well and we look forward to seeing you all at the weekend!). Phoebe didn’t really have anything to eat and has settled off to bed after a little sickness with her 7pm meds. She is having regular obs. done and all is well; hope she has a restful sleep.

Ok so that’s us for now. I will sign off early tonight so Ade can sort the pics. and I look forward to updating you all tomorrow. Thanks for all your prayers, love and well wishes for tomorrow. Xxx

‘If Angels could wish, their wishes would not be for what we do, but for what we would be in the midst of blessing as well as misfortune’

All is well, much love xxx