7th Day of Conditioning Treatment - Final day of Chemo Tomorrow!!!

Hi Everyone….

You’re not getting addicted to the blog are you??? :o)

As I write this, I just have a huge smile on my face as it's incredible to think so many people are reading this….How are you all?? Hope everyone is well and welcome to another instalment of Phoebe’s Journey.

Ok, where do we start, lots to tell you about tonight so I’ll get on as it's now 21.42. Go on, sit yourself down now!

We started today after a fairly restful night with some really funny moments; when I awoke and greeted Phoebe she was just sat in her cot giggling away and there can be no better way to start your day, surely? Ade arrived and we started breakfast early. Phoebs hasn’t eaten too much over the last couple of days but this morning she had about 6 teaspoons of Cheerios and a few bites of Daddy’s toast, oh and of course her little cup of tea bless her!!.

Phoebe is constantly keeping us entertained and we can really see her sense of humour developing. This morning she really tickled me when she called me over in her singing voice “Mummy, get it, Mummy get it”. I turned around to find she had her foot lodged into her wooden shape sorter whilst giggling and when I went over to her she looked at me, said ”oh” and pulled her foot out! She thought it was hilarious….oh geez she really had me - I put my hands up - I’ve been had by my 16 month old daughter!!! :o)

You know the special moments we've talked about...well it was Ade’s turn today. Phoebe was sitting in her cot after getting her ready for the day and Ade decided to start singing some songs with her…luckily she has escaped the 80’s influence so far!! (Don’t tell him that though). Ade started with 'Twinkle Twinkle' and Phoebe just began to sing for the first time; she started sounding some of the words and in the right place!!! We both looked at each other in astonishment and were speechless (c’mon it doesn’t happen that often with us two!!). It was amazing to hear her, he had tears in his eyes, he was so moved, and he said it was one of those moments you never forget!!

We had a lovely visit this morning from our friend Michelle and, bless her, she came over laden with gifts for Phoebs and us. Thank you so much Owen for the very lovely handmade cards you did for Phoebe Margi and us, such lovely handwriting too. You are very talented Charley Farley (that’s my cheeky nickname for Owen). Michelle was also telling me about Owen's part as Ralph in his school’s Christmas production of ‘Ralph the Reindeer’. Mum was very proud of you and said you were brilliant, especially your singing!! Well done you, we're proud of you too Charley!!! ;o)

The troops arrived and it was lovely to see them, bringing our clean washing amongst other things. Each day they make the journey to see us, supporting us all the way, we are so lucky to have them. Above is a piccie of Mum, Gwen, Phoebe and Rebecca (see below) from later on in the day. Mum was telling me how Auntie Winnie is getting on and I’m glad to say she is now out of hospital and she seems to have recovered so well but will need to have regular x-rays. Sending you all our love and positive energy to you Auntie Winnie for a continued speedy recovery xxx

Phoebe sure knows her own mind and today she didn’t feel like any lunch. The consultants have explained that Phoebe will have a loss of appetite so we don’t worry about it too much. She has had lots of nappy changes as you can imagine with the hydration required for her current (and final!) chemo. Her little bum has started to become sore so we're managing it with a special barrier cream, but it has been a little tough for her today.

Guess what….just when we needed something to take her mind off it, in walks the hospital music specialist Rebecca. It was like the angels had sent her; the nurses hadn’t mentioned this and so it was a lovely surprise. We had songs and played with lots of instruments - here is Phoebe playing the cabassa. This was her favourite and she really enjoyed herself, but not as much as Gwen when we had a resounding rendition of ‘Alice the Camel’. I think Rebecca was surprised by the enthusiasm that we had because of our withdrawal symptoms from Circle Tots (and that was just the Nans and me!! Ha ha!!!). How are you all at Circle Tots? Miss you and sending you all our love xxx

As the afternoon wore on, Phoebe became quite tired but still managed to have a piece of bread and butter. Mum still says ‘c’mon now, eat your piecey nice’ (Stokie lingo) and it's still lovely to hear it after all these years!! Bless her!!

Phoebe did extremely well today as it turned into a pretty heavy afternoon. As she is so young she may occasionally try to pull at her Hickman line so we put a loop into it just in case. We weren't due to get the dressing on it changed until at least tomorrow as nursing staff try and leave it for at least 12 to 14 days to let it knit properly into the skin. Phoebs must have caught it a couple of times today as she started to show that it was painful. Rachel, our nurse for the day, was great with her but she Phoebs went through it when we had to take the old dressings off, bless her. It must have really knocked her about a bit as she was quite sleepy and tearful, so I took my opportunity for some cuddle time.

The nurses have been so pleased with how Phoebs has taken her numerous oral medications. Most children tend to have the NG tube by now, but on the whole she’s not too bad at taking them and the majority will stop in the next couple of days. It’s not a nice procedure putting them in, so 'short term pain...' etc. We then tried give her some oral meds. as they have to be taken at regular intervals and this was hard for her today. She was quite sick with them and it's a little upsetting to see her go through it but I just kept reassuring her it was OK and that it would stop soon. We then left Phoebs to settle for a while and she finally managed to take them OK.

So far things are going well and as expected as Rob informed us when he popped by with a further update. We may have a few dips some days, especially one to two weeks after chemo and BMT, so you guys will need to bear with us then. BUT, for now, we are all just going to concentrate on the moment in hand and not worry about tomorrow.

We found out something very interesting today; Rob explained that donating stem cells doesn’t have to be as painful as it used to be. Our donor will donate their stem cells by peripheral blood stem cell donation instead of the more traditional bone marrow donation procedure. The donor will be given injections of a drug called 'Filgrastim' that will increase the number of stem cells in their bloodstream. This will then enable the donor to have the blood taken as you would in a standard blood donation procedure, the bone marrow cells will then be filtered off and the remaining blood returned. The advances in medicine are incredible, don’t you think? There have been studies into the effectiveness of both procedures and Rob is very happy to accept the stem cell donation by this method. We are pleased that our donor will be more comfortable with their choice of donation.

Phoebe picked up again around tea time although she again didn’t fancy anything to eat. Ann, our nurse for today, explained that Phoebe may now have a metallic taste in her mouth due to the chemo. which will reduce her appetite. Well it did for a while until she saw her Dad’s peas, her favourite, yum!!

Phoebe received some post today from her friend Molly. Both Molly and her Mummy Becky are regular bloggers; thanks for taking to time to leave the lovely daily messages of support and encouragement. Phoebe really liked her ‘In the Night Garden’ magazine and card. Bless you, that was really kind of you Molly. Phoebe sends you kisses xxx

Here is Phoebe looking really cool in Uncle Gary’s sunglasses. Phoebe’s room is really sunny and warm and she’ll hopefully be coming home with a suntan!! I would like to give a special mention to Lisa, Gary’s partner, who is enjoying the blog and tells me there are quite a few of her colleagues at Ernst & Young who are avid followers and look forward to the daily update. 'Hi!' to you guys there. Thanks for all your love, encouragement and support Lisa, it's lovely having you around hun xxx

Before I leave you tonight, I would like to say on behalf of Ade, Phoebe and myself a very big Thank you to Klate and all the boys. Ade joins the group to visit a place they call ‘Thut’ (Stokie speak for ‘the hut’) in the Newlands Valley near Keswick. Each year, depending on what they have spent, they each have refunds from any monies left and this year the guys all donated their refunds, totalling £145.00, to the The Donna Louise Trust. That was really kind of you all; I know Ade was going to try and join you for a few hours on Saturday but unfortunately he was unable to make it and I know he dearly missed you all this year. Klate, thank you, we appreciate you facing your fears of needles so well done you, go for it and give blood!!! Boys, thanks so much, it’s greatly appreciated. As some of you may know, The Donna Louise Trust is a charity based Childrens Hospice and the organisation is in need of funds to continue its work. They have been, and continue to be, an incredible support to us as a family throughout our journey with Eleanor May. We are incredibly touched by your gesture boys, Bless you xxxx Goebels, can I just say I have particularly missed your enthusiastic singing in my ear when I come to pick Ade up!!!! :o)

Ade would also like to say a big 'Well Done' to Tony Pulis, John Rudge and all of the team at Stoke City for an impressive fightback and point against Newcastle United last Saturday. You put a smile on his face! We especially appreciated your e-mail of well wishes John and we know a lot of the staff there are following the blog; Ade says he hopes to be cheering the team on again in person soon.

Spirit Eleanor continues to be in our thoughts and hearts everyday, in everything we do, and I know she is remembered by so many of you. Thank you for keeping her spirit alive, I’m sure she's watching over her little sis. We love you very much, God Bless you Eleanor xxxx

Thanks so much for your continued love, support and encouragement and glad you could make it. We all look forward to a new day and Phoebe's final day of Chemotherapy, have a restful sleep now. xx

‘Life seems to run wild, but God holds the reins and angels tend the
harness’

Much love xxx