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.

Marathon not a sprint...

Ellen has continued to have bad mucositis and is still being sick. She is being fed intravenously (as her gut isn't working) and she is on regular morphine to relieve pain. She has had a few brighter spells, however, and made it out of bed and into the playroom a couple of times. She even managed a brief trip outside on Thursday to see Daddy hit with a water-bomb! We can expect more of the same for the next few weeks.

This time last year Ellen was coming to the end of her neuroblastoma treatment and a number of people (including her Dad, two of her uncles, a second cousin and a number of other close friends of the family) were in final training for the London Marathon. As a group of 12, the "Running for Ellen" team raised a total of over £75,000 for Sparks to fund research into curing neuroblastoma. This year one of the team is doing it again! Please support David Johnson (DJ) in this great cause by clicking here.

Tough week

Ellen has had a tough week. The second round of chemo has caused her to have bad mucositis (inflammation and ulceration of the digestive tract). She is being sick, has constant diarrhea and requires morphine to manage the pain. She is unable to leave her bed and feels understandably miserable! The chemo has now finished but these symptoms are likely to continue for a while longer and we still have a wait of 4-5 weeks in hospital before her bone marrow starts to function again.