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.

Round 2

Ellen has recovered from her first set of chemotherapy and came home on Monday for a well deserved week away from hospital. She has been on fine form and we received good news on Thursday that the initial chemo has worked and she is now in remission (ie no sign of leukaemia cells). Unfortunately, given the high risk of recurrence, she needs further intensive treatment which involves another round of chemo followed by a bone marrow transplant. We are heading back to hospital for round 2 of chemo tomorrow and, all being well, expect to be there for 5-6 weeks before Ellen is well enough to come home again.

Still waiting....

Ellen is doing OK. She had another infection towards the end of last week, but that has now settled with more IV antibiotics. We are still waiting for her blood counts to come up before they can assess how she has done. This will take another week or so.