Tuesday, 31 May 2011

Good to go..

Ellen's bone marrow aspirate is clear so we have had the go ahead for the bone marrow transplant to begin this Friday (3rd June). We are still in Bristol and will be until the end of this treatment. Ellen is pretty well at the moment. The bleeding she was having has settled and her temperature has been down all weekend. So, on Friday she will start seven days of high dose chemotherapy. At the end of this (10th June) George will have an operation to remove a large amount of his bone marrow. This will be given to Ellen via her Hickman line on the same day. We then wait for Ellen's bone marrow to become George's. Sounds easy enough but in practise involves too many risks to think about. The minimum inpatient stay is 90 days!! We will keep you posted.

Saturday, 28 May 2011

So near yet so far...

We have had a week of ups and downs. Ellen was finally discharged from hospital last Sunday after 10 weeks in hospital. We were so pleased to be home and to be able to sleep in our own beds. We had to visit the hospital on Monday morning for Ellen to have a new Hickman line, chemotherapy into her spinal fluid and a bone marrow aspirate to check that there was still no leukaemia cells present. This went well and the aspirate result was clear. We then set off to Bristol on Tuesday evening for a pre-bone marrow transplant check up on Thursday. This involved blood tests for both Ellen and George and a long and very scarey conversation with Ellen's new consultant outlining all the terrible and potentially life-threatening things that may happen to Ellen during the course of the transplant. As we were getting ready to go back to Cambridge it became clear that both Ellen and George had a high temperature. Ellen was promptly admitted to the Bristol children's oncology ward for IV antibiotics and George was shipped off to the Grandparents as he is unable to come onto the ward when unwell. Ellen's temperature settled but she then had a big bleed, probably from her previous duodenal ulcer. This has caused her blood counts to drop again. The doctors here are now worried, however, that an alternative explanation for her counts to have dropped could be that Ellen may have had a relapse of her leukaemia; they therefore want to do a repeat bone marrow aspirate next week. If this is clear, the transplant will start on Friday 3rd June. If it is not clear, we will be sent home with no further treatment options. Again the long wait continues. Please keep everything crossed for our brave little girl.

Tuesday, 17 May 2011

Biopsy result

The results of Ellen's biopsy are reassuring. Whilst there is some damage to her liver (which we knew about anyway) we have been told that it is not severe enough to prevent her proceeding to bone marrow transplant. This is very good news. We still have to wait for her bone marrow to show signs of recovery from the last round of chemo before progressing to the next stage, but Ellen is feeling much better and is starting to walk, eat and laugh again.

Friday, 13 May 2011

Biopsy done

We arrived in London yesterday evening in an ambulance. Ellen had her biopsy this afternoon which went as planned and without complications. We will stay here in King's overnight and then hope to go back to Addenbrookes tomorrow afternoon. We should get the results of the biopsy on Tuesday/Wednesday but are still waiting for Ellen's bone marrow to start working again. We hope that will happen soon as we are unable to go on to the bone marrow transplant until it does. The long anxious wait continues...

Wednesday, 11 May 2011

Pre-biopsy nerves

Ellen has managed to not have a temperature for five days and is starting to get a bit of strength back. We are finally set to go by ambulance to Kings Hospital tomorrow for a liver biopsy on Friday (subject to her not getting a temperature in the meantime). We should get the biopsy results by early next week. Please keep your fingers crossed as the outcome of the biopsy may be critical in determining Ellen's treatment options.

Friday, 6 May 2011

Some progress

Ellen has slowly improved over the past week. She is managing to eat a little bit and has only been sick a few times. Her temperature is starting to settle and her blood results show that the infection is improving. Unfortunately, her bone marrow is still fairly empty and we think it will be about a week until we see any significant change. It was decided on Wednesday that Ellen would not be fit enough for a liver biopsy this week. We hope she will be able to have it at the end of next week. The long wait continues....