Day 26

After a long night Ellen is stable. Her blood tests suggest that her liver is working better. Her abdomen is still very swollen but her liver is no bigger. She is still pretty miserable but appears more comfortable. Her temperature is still grumbling so she is having a chest CT this morning. Her white cell count is creeping up so she may even be out of isolation by the end of the weekend!!

Day 25

Ellen has deteriorated today. Her weight has gone up and her abdomen is more swollen. We are anxiously awaiting how she does over the next few hours.

Day 24

After an anxious 24 hours Ellen's condition is stable. Her liver is still very big but the fluid in her abdomen has reduced slightly and her weight has remained the same, both of which are encouraging signs. She has also had a blood and platelet transfusion today and is still being very closely monitored. She has been pretty miserable today and has slept a lot. As ever, the waiting continues.

Petition

There is currently no government funding for neuroblastoma research. This is a petition set up by another family requesting that the government start providing some! Please will you sign and pass on as you feel appropriate. Thanks

http://petitions.number10.gov.uk/neuroblastoma/

Day 23 - veno-occlusive disease

Ellen has been worse today. She has unfortunately developed the dreaded veno-occlusive disease (VOD). This has happened because the high dose chemotherapy has damaged her liver. As a consequence her liver and spleen are enlarged and she is retaining fluid on her abdomen. This happens in over 50% of children who have a bone marrow transplant. It can be either mild/moderate and treatable or severe and fatal. At present the doctors feel that she has mild VOD. She has been very sleepy today and obviously feels rotten. She is currently being treated with a whole hoard of medications and being closely monitored. We can only hope she improves over the next few days.

Day 22

Ellen has had a bad day today. Her bone marrow has taken a hit and, as such, all her counts were very low this morning (Hb 6.6, WCC O.6, Neut 0.06, Plt 8! for the medics). She has had a constant nose bleed which looks far worse than it is. On top of all this Ellen was given too much fluid over the past 24 hours so was very bloated and found it difficult to breath when she woke up. She was slightly brighter after a blood transfusion, two platelet transfusions and two lots of frusemide (a diuretic to help her wee off all the extra fluid). We are just hoping that this is not the start of a down turn and that she is better in the morning!

Day 21

Ellen has been a bit better over the weekend. Her temperature has settled and she has managed to drink some water and milk. She is however somewhat annoyed with being stuck in this room with her drip pumps that beep every five minutes. She has taken to shouting at us to 'call the nurse' whenever her machine beeps. When the nurses arrive Ellen gives them a rather stern look. The consultant was even told on the ward round today - 'doctor you are in the way MOVE'. The general consensus is that this behavior signifies that Ellen is feeling a lot better but is not feeling totally right. Ellen is still being very closely monitored and we are certainly not 'out of the woods' yet.