Tuesday, 28 June 2011

Day +18

Ellen's mucositis is starting to get a bit better. She is still on a morphine infusion but is not being sick so much and her mouth is not quite so sore. She is able to sit up and is a bit brighter, but she is not yet eating or drinking and continues to be fed intravenously. We are waiting for George's stem cells to engraft (ie for Ellen to start growing her new bone marrow) but expect that to happen over the course of the next week. That in itself may bring more risks and complications but we find it best to take one day at a time!

Wednesday, 22 June 2011

Day +12

Ellen is still having a really tough time. The muscositis is so bad that she cannot eat or drink anything and she is on a constant morphine infusion for pain relief. Her mouth is very swollen and it is difficult for her to speak. She is still vomiting mucous and blood, and we have been told that this will continue for another four or five days. She also spiked a temperature of 39 degrees today, which we hope is nothing too serious but only time will tell.

Friday, 17 June 2011

Day +7

Poor Ellen is having a rough time. Her guts are really suffering with mucoscitis. She is being sick regularly despite maximum anti-sickness. She no longer has her NG tube as there seems little point with her vomiting so much. She has also had some blood-stained vomit which is a bit of a worry because of her previous duodenal ulcer. She is again on regular morphine for tummy pain. We have been told that this should continue over the next few days and will hopefully not get significantly worse.

George has recovered well from his operation.

Tuesday, 14 June 2011

Mucositis again...

Ellen is getting used to her isolation room (aka "Rapunzel's Tower") but unfortunately is now starting to feel the effects of the chemotherapy conditioning regime. She has developed mucositis, which means she is being sick regularly, has diarrhea and is unable to eat. She is being fed by a combination of feeds through her naso-gastric tube and intravenous nutrition in her Hickman line. The sickness often leads to her needing a new nose tube (currently averaging one new one per day) which is very uncomfortable and distressing for her, yet she remains amazingly brave and stoical. We have been told that the mucositis will get worse before it gets better over the next week or two. She is also on a cocktail of various antibiotics, antifungals, immunosuppressants and other IV infusions. All of this is to be expected at this stage but understandably that is little consolation to Ellen!

Friday, 10 June 2011

Well done George!

Transplant day has gone to plan. George had all the hard work to do but his operation to remove a significant amount of bone marrow went fine and, other than being sick all over his mum, he has recovered ok. Ellen has now received the transfusion of George's bone marrow stem cells. She is doing well so far but is likely to get very poorly over the coming weeks due to the effects of the conditioning treatment and it will be some time before we know whether the transplant has worked or not. In the meantime, she is now in her isolation room which she cannot leave until the transplant has grafted. Thanks to all for your continued support.

Wednesday, 8 June 2011

Calm before the storm

Ellen is doing well. She is having her last infusion of high dose chemotherapy today. She has managed to only be sick once and has as yet not had a temperature. The effects of this chemotherapy are delayed so we are now just waiting for them to kick in. We go into isolation on Friday after George has had is marrow removed. Ellen will not be allowed out of the room for a good few weeks. She will only be allowed to be visited by her Mum and Dad and is likely to get very poorly!

Saturday, 4 June 2011

Treatment started

Ellen has been moved to the bone marrow transplant unit and has started her treatment. This has so far been uneventful. She is in good spirits and we hope she may be allowed out for a few hours each day to enjoy the sun.