Wednesday, 30 December 2009

A Very Merry Christmas

Ellen had a wonderful Christmas. She really perked up the few days leading up to Christmas and was miraculously well. She enjoyed Father Christmas' arrival (although she realised it was her Uncle Will almost immediately) and had a fabulous time opening all her presents. She has now started her second round of immunotherapy treatment and is so far coping very well. We are due to go into hospital on 4th Jan for a new Hickman Line (the current line only has one lumen and she needs two); this will be followed by five days of antibody treatment.

Wednesday, 23 December 2009

Much Better

Ellen has been really well over the last few days. She is back to her normal self and is really looking forward to Christmas. Fingers crossed she remains well.

Monday, 21 December 2009

Slow recovery

Ellen has been slowly recovering from her immunotherapy which has taken longer than we had hoped. She has lost a lot of weight and is really tired, but is starting to feel a bit better despite a number of episodes of being quite angry.....which is understandable! We have been getting ready for Christmas with the hope that Ellen will be well enough to enjoy it and trying not to think about the next round of treatment.

Tuesday, 15 December 2009

Round one done

Ellen is back home. It has been a pretty horrendous few weeks. Her stay in ITU was not too complicated and we are hoping that the next cycle of treatment will be on the regular ward. Ellen did however feel dreadful throughout with sickness, temperatures above 40 degrees, 'flu-like' symptoms and leg pains from her injections. She is in reasonable spirits today but very tired. We have been told that these side effects should wear off this week.

Tuesday, 8 December 2009

A Suprise - Anti-GD2

Ellen has started a new form of immunotherapy treatment. This is quite complicated and has come as quite a shock to us all. She is very well, the change in treatment is due to a national change in 'protocol'. She is the first child in the UK to receive the treatment and as such we are surrounded by much anxiety. The treatment aims to mount an immune response to any remaining cancer cells. It has been used in the States and parts of Europe and been shown in preliminary studies to be pretty effective. However, as is predictable it is not without its side effects. From last Wednesday Ellen was given a daily injection of IL-2 for five days. This caused her to be reasonably unwell with fever, flu-like symptoms and horrible local reactions at the injection site. Yesterday morning Ellen started a five day course of Anti-GD2, an infusion given over an eight hour period. Ellen will be on ITU for the period of the treatment due to the potential side effects (mainly intractable pain). Anti-GD2 and IL-2 will be given on five separate occasions and it is due to finish in mid-April. Ellen is doing OK this morning but is pretty knocked off on a morphine infusion.

It has been very difficult coming to terms with the fact that Ellen will again be made to be unwell as we all felt that we had made it through the 'tough' bit of her treatment. We are all trying to focus on the potential benefit of the therapy and hoping that she will cope with the next few months. Sadly the battle has re-commenced!

Apologies for not mentioning this earlier. We have been sworn to secrecy until news of the clinical trial was announced this morning. Various related press releases below: