Friday, 31 July 2009

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!!

Thursday, 30 July 2009

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.

Wednesday, 29 July 2009

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.

Tuesday, 28 July 2009


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

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.

Monday, 27 July 2009

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!

Sunday, 26 July 2009

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.

Friday, 24 July 2009

Day 19

Ellen is slightly better. She is talking more and even sat up to have a game of 'greedy gorilla' yesterday. She is, however, still on morphine and has a grumbling temperature. If this does not settle over the weekend she will need to have a CT scan to look for a possible fungal chest infection. We are still waiting anxiously for signs of the dreaded VOD, for which we still have a few weeks of the 'high risk' period left.

Wednesday, 22 July 2009

Day 17

Ellen remains the same. She is still suffering with mucusitis and she has had to have an increase in her morphine. Other than one smile and a half laugh yesterday Ellen is very quiet and still sleeping a lot. The doctors seem satisfied that all is on track. The wait continues...

Monday, 20 July 2009

Day 15

Ellen is still suffering from the high dose chemotherapy. She has only managed to utter three words today - 'leave me alone'. She has had a platelet transfusion and has been sleeping a lot which means her pain is better controlled. The next 21 days are really critical for Ellen as she is at risk both from infection and from a serious complication of the chemotherapy called veno-occlusive disease. The doctors are happy with her progress but things could change at any moment. We are taking it day by day.

Saturday, 18 July 2009

Day 13

High dose chemotherapy is nasty, nasty, nasty. Ellen has been feeling well and truly rotten today. Her mucositis is getting worse. She has been pretty sick and has stopped eating and drinking all together. Her pain is being controlled with a morphine infusion which is certainly helping. We are still being assured that this is what to expect at this stage....

Friday, 17 July 2009

Day 12

Ellen has had a difficult day today. The high dose chemo has caused the inevitable side effect of mucositis - mouth/gut ulcers. These have given her enough pain to require morphine. However, in true Ellen style when the pain had settled she has had bouts of laughing and playing.

The photo attached is of Ellen's new best friend Archie (Grandmum and Grandads new puppy) - she asks how he is everyday (he is obviously missing her as much as she is missing him).

Wednesday, 15 July 2009

Day 10 - isolation begins

We are now 'in isolation'. Ellen is not neutropenic but due to the Swine flue risk we have been isolated 'just to be on the safe side'. There is apparently no need to panic and in all honesty we are probably in the safest place possible at the moment. That said we still hold our breath as we pass through the hospital concourse and have completely banned visits to the supermarket and trips on public transport. Not a sacrifice really.

Ellen is doing reasonably well. Her third stem cell infusion happened without complication. However, for the first time today she has not wanted to go out of the room but is now thankfully soundly asleep. We are still 'all holding in there'!

Monday, 13 July 2009

Day 8

Ellen has had a reasonably good day. Thankfully her line does not need to come out and she is not yet in isolation. Her first stem cells were infused today which went to plan. She will be given more stem cells over the next three days. After that we just wait for her bone marrow to recover. As ever we just hope things will run smoothly....

Sunday, 12 July 2009

Day 7

Ellen has been better than we had expected today. She does have a line infection. We will find out tomorrow if her line will have to be removed. Nevertheless her stem cell transplant will begin tomorrow afternoon. We are not yet in isolation but that will probably start early next week depending on her blood test results. We just keep our fingers crossed that things will run smoothly next week.

Saturday, 11 July 2009

Day 6

Well it has begun.....

Ellen has been impressively well for the past few days. She was even allowed home for a couple of hours yesterday evening. However like a bolt of lightening she has become unwell this afternoon. One minute we were painting in the playroom and the next she had a high temperature and a very impressive rigor. She has a presumed line infection and is back on IV antibiotics. We just hope that this will keep it at bay or we will run into the nightmare of a new line in the middle of her stem cell transplant.

Wednesday, 8 July 2009

Day 3

We are now half way through the high dose chemo phase of Ellen's bone marrow transplant. She is doing amazingly well. She has spent most of the day running up the hospital corridors singing 'We are the champions'. It is still very tough for us as we are aware that Ellen is somewhat of a ticking time bomb as the side effects of the chemo will not present themselves until next week. We have been told that all children respond differently and we can only hope Ellen's response is a mild one!

Monday, 6 July 2009

Day 1

High dose chemo has begun. We are now in a small side room which is thankfully 'air conditioned'. Ellen is in good spirits, little does she know how long she is going to spend in this room...

Last few days of freedom

Saturday, 4 July 2009

Back to reality

Ellen's bone marrow transplant will start on Monday. This will take a minimum of six weeks and initially involves very high dose chemotherapy for a week. Her stem cells will then be given back to her via her Hickman line. This whole process is very high risk and we have been told that Ellen will become extremely unwell throughout the procedure. We are all (apart from Ellen who remains her cheerful self) completely terrified. We will keep you posted.......