Ellen is 4

Ellen had her birthday celebration on the ward this week. She had fun dressed up as 'Jessie' from Toy Story. She is doing pretty well at the moment. We are still waiting for her bone marrow to start working again before we find out if the chemotherapy has worked. We hope to then have a few days at home at which point we will have a proper party.

Update

Ellen is doing as well as can be expected. The temperatures and mucoscitis seem to have stopped, but she is very tired and all her hair has now come out. She is on IV antibiotics and is being fed via naso-gastric tube. We still have a few weeks before her bone marrow will hopefully start to pick up and we will find out how successful this course of chemo has been in attacking the leukaemia.

Lag effect

The effects of Ellen's chemotherapy are now kicking in. She has a temperature and is developing mucoscitis (inflammation of the lining of her gut). She will soon need another nose tube as her appetite has tailed off. These effects will get worse before they get better so we now just sit and wait for her to feel better.

Doing OK

Ellen's Hickman Line went in fine. She has now had three days of chemotherapy and is doing OK. We now have a week more of daily chemotherapy. We will then continue to be in hospital for 4 - 6 weeks whilst we wait for the effects of the chemotherapy to wear off. At this point we will find out if the chemotherapy has worked and therefore what the next step will be.

Signing in

After a truly wonderful summer Ellen has sadly become unwell again. She has had several viral infections over the past eight weeks. We initially thought that these were straight forward winter bugs but it has now become clear that Ellen has developed Acute Myeloid Leukaemia. This is a rare complication of the bone marrow transplant she had 18 months ago. Today she is having another Hickman Line put in and will start a course of chemotherapy that we hope will clear the leukaemia cells. It is going to be yet another tough journey for Ellen as the doctors are not sure if the chemotherapy will work. We remain positive that Ellen's strength and tenacity will get her through this.

Signing out....

Ellen really enjoyed her first visit to the swimming pool. It is hard to believe that this time last year she was nearly half way through her bone marrow transplant and was to face over a month in isolation and a long hard battle with VOD. Heres to a summer of swimming, fun and the holiday club which starts in two weeks.

We are now hoping that Ellen's life will now be that of a regular three year old with no medical news to report and, as such, we feel it is time to sign off from regular blogging. Thank you to all those who have supported us over the past 18 months; there are far too many of you to mention everyone but without you we would never have made it this far....

It is OUT

Ellen's Hickman line is safely out. She is so pleased and can now enjoy the delights of the recent heat wave without the fear of it coming out and bleeding or it becoming infected. We plan to take her swimming on Thursday. This will be the first time she has been for 18 months and as she used to love it so much will be a very special moment!