Saturday, 27 February 2010

Round four

Ellen has started her fourth round of immunotherapy with a week of daily IL2 injections. It has been a relatively uneventful week with a few episodes of vomiting and Ellen feeling pretty washed out. We are back in hospital on Monday morning for her week on ITU which we also hope will be uneventful.

The marathon sponsorship is doing amazingly well. Many thanks to all who have donated. For those yet to do so, please see the Running For Ellen link above.

Sunday, 21 February 2010

Ellen is 3

Ellen is 3 today. After a slight hiccup with a visit to the hospital in the early hours of friday morning (it turned out to be a bog standard viral 'cold' something we are no longer used to) she has had a fantastic weekend. She really enjoy herself and had more energy than we have seen for over a year. She rode the "big girl's" slide on her own at Woburn Safari park but then slept through the safari drive! She had a Birthday Tea Party with a cake and candles that she loved blowing out (several times) and some really lovely presents. We are all now pretty exhausted and are gearing ourselves up for our fourth IL2 week.

Thursday, 18 February 2010

A year ago today

A year ago today, Ellen was first admitted to Addenbrookes. What a year it has been! After 110 nights in hospital, 7 operations, 22 general anaesthetics, 20+ blood transfusions, 30+ platelet transfusions, 9 rounds of chemotherapy, 14 rounds of radiotherapy, countless courses of IV antibiotics, a bone marrow transplant, 80+ injections and 6 weeks of a completely novel treatment, we are still standing! We certainly wouldn't be if it was not for the huge support of our family and friends to whom we are eternally grateful. However, the real star is Ellen. She has amazed us every step of the way with her tenacity, stoicism and good humour. We cherish each day that we spend with her.

Monday, 8 February 2010

To infinity and beyond...........


We made it home on Saturday morning. Ellen has been sleeping alot but is otherwise very well.

Friday, 5 February 2010

Almost done

Well, round 3 is nearly finished. This cycle has certainly been easier than the last two - mainly because Ellen has not had problems with her breathing. We were moved from ITU to the regular ward on Wednesday morning. We are now waiting for her last anti-GD2 infusion to finish then fingers crossed we will be home tomorrow or the day after. We cannot believe that we are now over half way through the immunotherapy....

Monday, 1 February 2010

Round 3

Ellen's IL-2 went surprisingly smoothly. Despite making Ellen tired and anaemic (she had yet another blood transfusion on Sunday) there was only one significant temperature and she has managed not to lose any weight! She had a good weekend which included a very successful trip to Woburn safari park. We are starting her antibody therapy on Paediatric ITU this morning and are crossing our fingers that this is a better experience than the last two. One of Ellen's very brave friends, who has been a great support to us over the past year, is also fighting neuroblastoma and having a very challenging time. Please can we ask for your positive thoughts and prayers as she has a tough week ahead.

Many thanks to those who have donated to the 'Running for Ellen' fund! If you haven't done already please support this great cause (link above).