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.

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.

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...

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.

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....

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.