Slow Progress

Ellen is still very poorly and into her fourth week of this infection; she has been in hospital for three months now (with only one week at home) which is understandably taking its toll. She is starting to show some signs of progress (less vomiting and tolerating more nutritional feed) but still having high temperatures. We are trapped in a vicious circle as the infection is suppressing her bone marrow recovery but she can't fight the infection effectively without an active bone marrow. A combination of this slow recovery and the logistical impact of all the public holidays has delayed the liver biopsy in Kings Hospital which we now hope will be towards the end of next week. Thanks for all messages of support.

Getting complicated ...

Ellen is off the Paediatric Intensive Care Unit. She is still having temperatures and vomiting but no longer needs oxygen. We are still waiting for her bone marrow to start working and her blood counts to improve. This is likely to take another week to ten days. Only then do we think that her temperatures will improve. She is also at risk of picking up further infections during this period so we are really hoping that things remain stable.

Two days ago Ellen vomited fresh blood so yesterday she had a general anaesthetic and an endoscopy to try and indentify the source of bleeding. The bleed had come from her small bowel due to the damage done by her recent courses of chemotherapy. This is good news as things should heal on their own. However, the endoscopy also confirmed that Ellen has some damage to her liver. We are unsure what has caused this, it is most likely due to all the chemotherapy she has previously had. As a bone marrow transplant will involve treatment that may further damage her liver we now need to determine the cause and extent of the damage. This will involve taking a sample of Ellen's liver tissue and looking at it under a microscope. As Ellen is at such risk of bleeding this procedure will have to been done by passing instruments down her jugular vein. They are unable to do this at Addenbrookes so this will be done at King's Hospital in London. This will hopefully be done next week and will involve a trip in an ambulance and an over night stay. We are all terribly anxious that the liver is damaged to such an extent that Ellen will no longer be fit enough to have a bone marrow transplant and will thus have incurable disease and no chance of long term survival. After all she has been through this will be a very difficult reality to face. So please please keep your fingers crossed for our brave little girl.

Update

Ellen is still on the Paediatric Intensive Care Unit. She remains unwell. She is still having regular fevers despite a multitude of antibiotics and is still requiring oxygen and morphine. She is also struggling to keep any fluids down without vomiting. We are waiting for her blood counts to come up as this should help fight the infection. Things could be a lot worse, but it is taking a painfully long time for us to see any improvement.

Intensive Care

Ellen has had a bad 24 hours. We were transferred to Paediatric Intensive Care Unit (PICU) yesterday afternoon as she was becoming progressively unwell with fevers and difficulty breathing. It became apparent that her Hickman line may be infected, causing severe sepsis. The line was removed this morning. This involved a general anaesthetic and was carried out on PICU as Ellen was too unwell to wait for a theatre slot. Her condition has improved slightly since the Hickman line came out but she is still very poorly. She will be kept on PICU for at least a few days whilst they continue to monitor her closely.

Poorly again

Ellen has been unwell since the weekend. She has had a high temperature, is vomiting and again has fluid on her lungs. We are waiting to find what the cause of the infection is. Ellen is obviously feeling really rotten. She has some brighter spells during the day but is generally pretty miserable which is so unlike her. We are still waiting for Ellen's blood counts to improve. Hopefully when that happen she will start to feel a bit better...

Ellen is starting to get better. Her mucoscitis is improving and her chest infection has cleared. Today she managed to get out of bed a build a "den" with hospital sheets and blankets. We are still confined to a side room but hopefully that will change over the weekend so we can visit the playroom and even enjoy the sun...

More of the same

Ellen has had another bad week. The mucositis has continued and she has had problems with fluid overload as a result of all the medication and supportive infusions. This has caused fluid in her lungs and associated breathing difficulties, requiring her to have oxygen at times. She has had temperatures and a viral infection, so all in all not much fun. We hope things will pick up a bit this week.

We have now had confirmation that the next stage of Ellen's treatment will be a donor bone marrow transplant. Fortunately, her brother George is a tissue type match. Sibling matches are generally better than non-related donors and we don't have the complication of searching the worldwide bone marrow register, which is good news (except maybe for George!). The transplant will take place in May. It is a lengthy and complicated procedure and needs to be done in a specialist unit at the Bristol Children's Hospital. We can expect to be there for at least 3 months! We are hoping that Ellen gets some time at home before then as she will be in an isolation room for most of the time in Bristol.