Tis the season to be jolly

Sometimes even I am taken aback by the many twists and turns of our lives.  For all of November Daisy was in Great Ormond Street where she had a major five hour surgery, central line infection and sepsis, blood transfusions, fluid resuscitation's and various ongoing bladder infections.  Once  she was stable and the hospital were not doing any more than we would do at home (which as you know is quite a lot really!), we transferred for a lovely transitional stay to our hospice, this time the one in Hampton, Shooting Star House. 

Happy to be in the ambulance transferring to Shooting Star House


The hospice stay was a chance for us to once again re-group as a family, for us to get our heads around Daisy's increased care needs and to try and find even more nooks and crannies for the growing list of medical kit and medications she needs.  It was a much needed respite break too as Andy took a tumble on an uneven pavement while rushing home to see Jules' Christmas Play and ended up with a broken wrist! (I found it amusing until someone pointed out that not only would he not be able to drive until it had healed but also putting up TPN and doing all the IVs and medications/stoma bags/catheters was now out of the question!).

Daisy came home from the hospice, we were reunited as a family  and then the next adventure began, where Daisy became a princess for a day!  While we were in Great Ormond Street Andy took a call from the lovely Meg Bhari , founder of a charity called "Believe in Magic", she offered Daisy the chance to be one of a group of special princesses who were invited to visit Buckingham Palace and decorate the palace Christmas Tree!

So excited to be heading off to the Palace with mummy!
with special friend Rhea infront of the Palace Christmas Tree

We never allow ourselves to get too excited about any treats that are arranged for Daisy because so often plans can go awry so it was only on the morning of the event that we allowed ourselves to get a tiny bit excited.  Not only was Daisy going to be a princess for the day but Meg had arranged a for a beautiful dress to be made for her by the lovely Nicki Macfarlane (who made the Duchess of Cambridge's Bridesmaid dresses).  She was also given a tiara and matching silk shoes. Daisy joined 15 other special little girls who were chauffeured in their own Bentleys to the Palace.  Initially she had been a little overwhelmed, after all only a few days previously she had been a hospital patient and was still very fragile but she soon got into the spirit of the day when she waved her special Palace security pass at the tourists waiting outside the Buckingham Palace gates. They probably thought we were visiting dignitaries!

The Palace staff were as excited as we were, it was the first time they had hosted a tea party for children at Buckingham Palace and they really got into the spirit of it, helping the girls colour and decorate decorations to hang on the tree.  In fact I was so involved in helping Daisy with the glitter that I didn't see a very pretty young lady come and sit next to us, she introduced herself as Eugenie and then told Daisy that her granny lived upstairs!


Believe me Princess Eugenie, once can never have too much glitter on a decoration!

Daisy was most excited at the arrival of Santa bearing presents including a pair of pink Buckingham Palace socks.  We left the palace and the fun continued as a beautiful ballerina from the English National Ballet arrived dressed as the Sugar Plum Fair and sat down to read the girls the story of the Nutcracker. (I was also glad to see her tucking into a large piece of cake afterwards too!) - it was such a magical day and as the day progressed Daisy became less and less anxious, it was lovely to see her beautiful face full of smiles and not wracked with pain as it had been the week before. 



In true Daisy fashion she soldiers on, she is back at school and has thrown herself into the Christmas celebrations as well as the increasingly over the top build up to her birthday.  Her beloved Singing Hands came to school to perform for the whole of the Junior department as a pre-birthday treat and Daisy was beside herself, surrounded with her best friends, her teachers, Mummy and Daddy and even big brother Theo (who she calls Yoyo) finished his mock gcse Chemistry exam in time to drop in.

Christmas parties and activities have been in full swing since Daisy has returned home, we have been Ice Skating at Hampton Court Palace, met the real Father Christmas and his reindeer in Richmond Park and Daisy played a Ballerina mouse at her school Christmas production of The Snowman.  But before that there is her birthday.



On Saturday she will be 8 years old, 8 years of major highs and major lows and never a dull moment - she defies the odds over and over, confounds the medics with her resilience and ability to bounce back from the worse case scenarios - she is just amazing.

In fact we all think she is so amazing that we agreed for her story to be told as part of a TV fundraiser called Text Santa.  This year ITV have selected six charities to benefit from the Text Santa fundraising including Together for Short Lives which supports the work of the 49 Children's Hospices in the UK. Daisy's story features during the evening of live TV to show how the work of Children's Hospices are so essential to families like ours.  Without that respite stay at the end of another long hospital stint we would not have had chance to pause and catch our breath and without our hospice community nurse coming to the house for a few hours between Christmas and New Year we would not have chance to have a bit of quality time with our older children.  We want everyone to know how vital the services of Children's Hospices are in the UK and how much they rely on donations to exist and provide their essential services to thousands of families like ours.  You can see Daisy's TV debut if you are in the UK by tuning into ITV at 8pm on Friday 21 December. 
text santa




3 comments:

Steph Curtis said...

I can't stay in and watch sadly but I I'll def have it on record and will be fast forwarding to that important part! You've had such a lot 'on your plate' lately that I really hope you manage to find time to unwind and relax over Christmas, and enjoy the good things in life - eat, drink, and be merry!! Happy Christmas to you all and I'll look forward to catching up at a Starbucks in the new year ;) x

Alison said...

Go Daisy!!!! But as we all know she has an extra special family behind her.....I'm beginning to envy her social life..... Special wishes for a great day on Saturday for her Birthday and of course a visit from Santa on Monday night. love and hugs xxx

Alison said...

Go Daisy!!!! But as we all know she has an extra special family behind her.....I'm beginning to envy her social life..... Special wishes for a great day on Saturday for her Birthday and of course a visit from Santa on Monday night. love and hugs xxx

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