Sunday, 17 April 2016

London Marathon

It is a long time since our last post. Ellen is doing fantastically well.
Next week I will be running the London Marathon for Clic Sargent. Please sponsor this wonderful charity :

Monday, 19 May 2014


Ellen is doing really well at the moment. She had her SATS last week - fingers crossed she will have done OK but, she certainly hates maths which doesn't help her chances of passing! Things have settled a bit with her liver - her last endoscopy was clear and we are only due a repeat in September. So, fingers crossed for a quiet, fun summer!

Today Ellen
decided she was going to dress up as a 'rugby player'.

Sunday, 9 March 2014

Ellen is 7 and endoscopy

Ellen is eventually 7. Not for one moment back in 2009 did we think she would ever reach this milestone. She had a really fun birthday in center parcs followed by a birthday party at 'funky fun house', with her school friends. She then had to have an endoscopy at Kings in London last friday. Her last endoscopy was cancelled due to a more pressing case (always a relief not to be that case!). Friday was thank-fully very straight forward and Ellen didn't even need to spend the night in hospital.

Last weekend Ellen featured in our local paper. The link is below. We are normally terribly reluctant to do anything so exposing however, Cancer Research UK funded a large chunk of Ellen's treatment. When they phoned me and asked if they could use Ellen's story to promote a current fundraising idea I replied "not a chance". I then realised that the person to decide was not me but Ellen. So, that evening I asked her "what would you think of being in the papers to tell the story about when you were unwell?". Her response was "I would love to", and you know it has been a real boost for her. So, if we have raised a bit of money for charity and Ellen feels more confident thats great ....

Wednesday, 19 February 2014

5 years ....................

Today marks five years since Ellen was diagnosed with cancer. Since that day she has had multiple surgeries, numerous chemotherapies, 23 rounds of radiotherapy, 6 hickman lines and a porta cath, a stem cell transplant (requiring six weeks in complete isolation and nearly proving fatal!) and, five months of a novel immunotherapy (ie she was the first child in the UK to have it!). This was followed by a SECOND cancer diagnosis - secondary AML. She had three further rounds of chemotherapy, during which she nearly died from neutropenic sepsis, and then a donor bone marrow transplant from her little brother - not a mean feet on its own, requiring three months in complete isolation. Recently she has been diagnosed with portal hypertension from which she has had two catastrophic gastrointestinal bleeds. Quite an eventful five years by any standards. Throughout all this Ellen has remained in the most part happy and enjoyed life. Today she cycled to the water park in Center Parcs, went on the slide on her own, down the rapids with some help and thoroughly enjoyed herself. More of a miracle is that she is coping well at school, she has lots of friends and to-date remains pretty unaware of the battles she has faced. We are so very proud of her.

Sunday, 12 January 2014

Feeling better

I am feeling better. I have been climbing a crows nest. Here I am.....
I have another endoscopy at the beginning of February. Hoping it will be straight forward........

Wednesday, 25 December 2013

Merry Christmas

Hello Everyone,

Merry Christmas. I have had a fantastic day. I have spent all day with my family having plenty of fun and Father Christmas brought me loads of presents. I am now watching Despicable Me 2 and looking forward to a second Christmas with my cousins tomorrow.

Have a happy new year.

Love From


Friday, 13 December 2013

We are home

Ellen is HOME! The endoscopy failed to show a point of bleeding. This is bad news in terms of finding a definite cause but good news as it suggests that whatever was bleeding has settled. The most likely explanation is that the bleeding was from the veins in her tummy caused by damage to Ellen's liver during her previous treatment. We are keeping everything crossed that she does not bleed again and that she can enjoy christmas without anymore hospital visits. She will have another endoscopy at Kings in 2 months to check everything is OK.