Tuesday, 26 January 2010


We are very pleased that 12 of our friends and family will be running the London Marathon this year for Ellen. They will be running for the charity SPARKs (SPorts Aiding Medical Research for Kids). The vast majority of Ellen's treatment would not have been possible without medical research, a great deal of which is funded by charities such as SPARKs. Although we realize that funds raised this year may not directly impact on Ellen's care, we hope that they will help other children who will suffer this terrible condition in the future. We are really grateful to those giving up their valuable time to run the marathon for Ellen; please support them all - SEE THE FOLLOWING LINK: http://www.runningforellen.com/

Ellen's Team are: Simon Walker (Ellen's dad), Will Gelson (Ellen's Uncle), Toby Walker (Ellen's Uncle), Harry Boyd-Carpenter, Geriant Morton, Nick Druett, David Johnson, Rowley Aird, Susie Calderbank, Matt Rees, Iwan Walters, Tom Sumpster.

Monday, 25 January 2010

Round 3 starts

Ellen has had a good week and has been really well. We managed to visit the London Aquarium on Friday which she really enjoyed. Sadly round 3 of her immunotherapy starts today with daily injections of IL-2. She coped pretty well with this last time so lets hope this week is not too bad.....

Sunday, 17 January 2010

Feeling Better

Ellen is getting steadily better. It has taken her all week to regain her strength and she has lost a lot of weight again. She is certainly feeling the cumulative effects of an intensive near year of treatment, and its hard to believe that we still have three more tough months ahead of us. However, this week should be a good one before her IL2 next week and then immunotherapy re-commences on Monday 1st Feb.

Monday, 11 January 2010

Finally home...

We have just got home from the hospital. Ellen has recovered pretty well from this cycle of treatment. Her temperature has come down slowly and it has taken her a few days to get rid of the extra fluid she was given with over the past week with her immunotherapy. She has also had some rather loud snoring at night which seems to be related to a 'viral cold' (every little thing is taken seriously surrounding this treatment). Despite being very tired she is getting back to her usual happy self. We only hope this cold does not lead to a temperature and thus a swift visit back to Addenbrookes!

Friday, 8 January 2010

Second round nearly finished

After a long week Ellen's second round of immunotherapy is hours from being complete. She has coped very well and despite the earlier hiccup things have run relatively smoothly. Her pain has been well controlled with morphine and her breathing has become much more settled over the past few days. We hope to be home by the end of the weekend and are very pleased to be 40% of the way through this horrible treatment.

Tuesday, 5 January 2010

Round two

Ellen is back in hospital for the second round of her immunotherapy which has already been somewhat eventful. She had a blood and platelet transfusion and a new Hickman line put in on Monday morning. Her immunotherapy was then started on the regular ward and everything was going impressively smoothly until she decided to almost stop breathing. A very scary experience as at that moment, there were no doctors or nurses in sight. Thankfully a passing Consultant was virtually rugby tackled to assist and Ellen was sorted out pretty quickly. It seems that this was caused by the combination of a swollen throat from her anaesthetic, an allergic reaction to the immunotherapy and excess fluid on her lungs. We were rapidly moved to ITU and are continuing the remainder of this course here. Ellen has been reasonably well with today's infusion and we hope the rest of the week will be a little less eventful.