Sunday, 27 September 2009

Feeling Better

Ellen is feeling much better. She has not had a temperature since Wednesday morning and is in very good spirits. We are still in hospital having IV antibiotics but hope to be allowed home this evening. Ellen will be having a new line put in on the 6th October and then her radiotherapy will begin on the 7th October. So, after a rather frightening evening we have only been set back by a few days....

Wednesday, 23 September 2009


Ellen had a rather unexpected visit to ITU last night. She had been a little tired over the weekend so we went to the peadiatric day unit yesterday morning for a blood test. This was taken from her Hickman line. Two hours later Ellen was very unwell with a high fever and rigors. Her pulse rate was very high and she was having to work really hard to fight against the infection coming from her line. She was quickly whisked to theatre and her Hickman line was removed. She then slept over night on ITU and we are now back on the regular ward. Ellen is doing fine today but we will be here for the next few days for IV antibiotics followed by the insertion of a new line in time for radiotherapy! On a positive note Ellen scans are clear.

Tuesday, 15 September 2009


Ellen has had a good few days. She has been on her first bike ride (she was pulled behind Daddy's bike in her new trailer) and had her first day at nursery school. We have, however, also been in hospital having lots of scan and today had her radiotherapy planning scan. All these have involved Ellen having either oral sedation or a general anaesthetic which always proves challenging as she is unable to eat or drink for six hours before the scan and when she comes round is like a drunk teenager (either giggling or falling over!). We have two more scans this week and then two weeks off before radiotherapy begins on Monday 5th October. This will involve 14 morning sessions of radiotherapy with a general anaesthetic. A very daunting prospect.......

Saturday, 5 September 2009

No news

Ellen is fine. She has put on half a kilo and is now almost running! We have a CT and MIBG scan next week. Due to Ellen's age and rather feisty nature she will have a general anaesthetic for this which is always quite a challenge! We hope her radiotherapy will then begin at the end of September. This will involve 10-14 blasts on consecutive days. This will again need a general anaesthetic each time but we will thankfully not have to stay the night in hospital.