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.

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.

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:

http://uk.news.yahoo.com/5/20091210/tuk-brave-toddler-in-cancer-therapy-tria-45dbed5.html

http://news.bbc.co.uk/1/hi/health/8401508.stm

http://www.timesonline.co.uk/tol/life_and_style/health/article6950871.ece

http://www.dailymail.co.uk/health/article-1234689/British-children-test-cancer-cure.html

http://www.mirror.co.uk/celebs/news/2009/12/10/x-factor-cash-will-help-research-for-childhood-cancer-115875-21886599/

http://www.telegraph.co.uk/health/healthnews/6769790/Pioneering-new-treatment-could-offer-hope-to-childhood-cancer-sufferers.html

Round one done

Ellen has nearly completed her first course of Retinoic Acid. She has had very few side effects with only a bit of dry skin. She is very well, talking more and more and getting much stronger. We have had no problems with her new Hickman line however, she did manage to pull her nose tube out in a rather full lift much to the suprise of our fellow passengers!

New Hickman Line

Ellen's new Hickman line was put in yesterday morning. It was all very straight forward. Lets hope it stays in this time! We have started the Retinoic acid this morning for two weeks. Ellen is still enjoying life and is already looking forward to Christmas....

Retinoic acid

Ellen is doing really well. She has been enjoying her new found freedom without her Hickman line. Sadly she is having another one put in on Tuesday. She will then start her Retinoic acid. This will be twice a day for two weeks followed by a two week break for six cycles. We will give this at home so hopefully no need to stay in hospital! The main side effect will be dry and pealing skin mainly on the face. We have been assured that this will not hurt her but will look somewhat unsightly. It is lucky Ellen is so little and will hopefully not care.

Just waiting..

Ellen has recovered well from the radiotherapy. She has been a bit tired and had some rather impressive tantrums but is eating well and continuing to put weight on. We are now just waiting to find out when her retinoic acid will start. We have been given a few weeks off so we are making the most of it. We went away for the weekend with a group of friends and are off to Dorset for a mini holiday tonight. Unfortunately Ellen managed to pull her Hickman line out this weekend. This was a bit of a shock and resulted in a rather rapid drive to the hospital but thankfully no harm was done. However, Ellen now has to have another one put in; yet another general anaesthetic!