Transplant Day +33 - With a few ups and downs...

Hi there Bloggers and Bloggeroonies,

We hope this posting finds you all well and thanks for joining us with another update on Phoebe’s progress following her recent Bone Marrow Transplant.

Today has been a good day and Phoebe had a settled night following her initial sickness around 11.30pm. The nurses gave NG feeds at 3.30am and 8.30am which she tolerated really well. Nicola our Nutritionist (left) has advised feeds should be every 3 hours but this morning it was all hands on deck for one of the patients who was particularly unwell at the time. As I said, Phoebe seemed to be tolerating these feeds throughout the night and this morning she ate an incredible breakfast, having half a bowl of porridge and a full slice of toast with jam thickly spread (aarrgghh!! Can’t actually believe I’m typing those words)…but needs must and of course this was accompanied by Phoebe’s favourite…a nice cup of tea……the big tea belly!!!

Phoebs was in good spirits this morning but did seem a little tired although she still wanted to walk about constantly. We had a lovely time playing at her little table in the room and she particularly likes to read some mini Disney books that her friends Cameron and Emma so kindly bought for her. Each short story features the female characters of Disney, e.g. Ariel, Sleeping Beauty, Snow White, Cinderella etc.; when Phoebe wants to read them she refers to them as "The Girls, The Girls". It is amazing as we begin to understand what Phoebe is saying; she has a fantastic understanding and knows exactly what she wants. As some of you may know, Eleanor didn’t like dummies but loved her muslin cotton sheet. However Phoebe absolutely adores her dummies and not only is she asking for her dummy, it has to be the blue or pink one by request now!!!! Erm, hmm not fussy at all then!!! Phoebe has always been quite tactile and her special click dummies helped her to develop her fine motor skills early on.

Throughout the morning as Phoebe had the nutrition feeds her appetite reduced, which can be expected, although when the troops arrived (right), bless them, she happily munched on some apple out of Mum’s pasta salad along with some sultanas etc. It was great to see the guys here today and we had the full quota; well we say that but Ed is at home keeping everything ticking over!!! Bless them, they arrived with really tasty sandwiches that Kevin kindly made for us at the Tollgate. Thanks Kev. Also, Nan kindly made us a flask of milky coffee, which is so comforting…it reminds me of the fabulous day trips out with Mum and Dad, especially to the seaside. Mum would make us a flask and some cold toast to take with us…it was so exciting. I usually asked for mine before we even reached the motorway!!! Aah fond memories….our parents and Grandparents Nan and Ed look after us so well and I just hope that we are a fraction as good as them!! To top it all, Mum made us some cottage pie with broccoli…wow!! Phoebe had a few snacks during the afternoon and managed to keep most of it in her tummy.

Whilst the folks were here (left), we took the opportunity to have a run out to a place called Manchester Fort; it’s a retail park about 15 mins. drive and has some good stores. It gave us a little time out and we came back refreshed for Phoebe…with a cheeky TK Maxx bargain in tow!! BAG IT NOW…BAG IT, BARGAIN IN THE BAG, IN THE BAG!!! Most of you know I enjoy finding a cheeky bargain!! Anyone found any during the sales season?

When we returned, Phoebe had fallen asleep mid-dance with Mum and Gwen, bless her. Gwen had brought a lovely doll for Phoebe (right) which was kindly hand made by one of her friends Rita and Phoebe loved it. She started to dance with it but after a while just happened to completely fall asleep, she was so tired. Looking at the blood results today, we can understand this as she had a low Hb and a transfusion took place later in the day!!

As early evening approached, we noticed that Phoebe didn’t really want anything to eat…not even Wotsits!! Since yesterday, Phoebe has had a slight rash located on her tummy, back of her shoulders and around her neck. This is quite faint and we have noticed it now covers her chest, abdomen, and neck. We won’t worry too much as Rob didn’t seem overly concerned, stating that if it did eventually turn out to be GVHD, it would be at the mildest end of the scale. Ironically, this is viewed as a positive as it shows the new cells are fighting to remove any remnants of the old ones. Rob was happy with this situation and viewed it as totally treatable.

As Phoebe lay settled she started with a gentle cough and this is a sure sign that a bout of sickness is on the way. At around 7.30pm Phoebe had been really sick but we eventually settled her stomach and she went back to bed. Just after this she rubbed her nose and caught her finger in the NG tube which is attached to her cheek - out came the tube! We needed to re-insert this as soon as possible because meds and feed were due. It was a little difficult inserting the tube tonight as Phoebe had been upset anyway, but finally it was in situ and we managed to settle her again.

By 9.30pm Phoebe had more sickness but there was nothing in her tummy only the meds that Ade had given to her down the tubes. Aaah bless her, she was so tired. She has now settled and we have decided to give her a feed via a machine over one hour to see if she can tolerate this again. There can be many reasons why Phoebe is sick and we have to remind ourselves that she is only a few weeks past having chemotherapy too; this in turn can bring issues to the stomach and other organs but we will sort things out and get her back to eating well with little worry.

We will have a good chat with Rob tomorrow regarding the rash and catch up with Nicola our Nutritionist regarding the line feeding; we will of course update you all tomorrow.

As we have returned to the Unit, so have a few of the other patients and it is nice to catch up and here their progress. We have been speaking with a family on the ward who follow our blog and today their little boy has been transferred to intensive care where they can keep a closer eye on him. I'm unable to go into any further details and ask that you keep Sonny in your prayers tonight that he will be better and back with us on the unit as soon as possible.

Both Ade and I are fine. Ade is doing a brilliant job with all the medicines and looking after Phoebe and me too. My diet, well… it’s going….OK. Ade asks me if I’m still eating my gruel and having seen so many programmes on the TV about obesity over the last couple of days it spurs me on to look after myself and not to indulge…too much ;o). It is somewhat difficult when we have our lovely play specialist Muriel pop by with a huge tin of chocolate bars c/o the Charities Office…I resisted the temptation for a curly wurly and as I have offered my diet up for Phoebe, she happily had a few bites of Cadbury’s fudge!

Well everyone, another day done and we bid you farewell. We will of course keep you posted on any developments but for now…rest easy….

‘Listen for your Angels and they’ll sing you a tune. But only when you listen closely.'

Wishing you all a peaceful sleep,

Lynn, Ade, Phoebe and Spirit Eleanor xxx