Ros was discharged and spent the weekend at the farm

A nice quiet weekend. She was eating better, drinking normally and all symptoms seemed to have gone away - other than being very weak.

Frogspawn in the moat

Starting to make some progress again

Six days after she went in the Doctors from Kings and Derriford think they know what is wrong. It is not any form of infection (extensive tests, and repeats, being negative), but they believe it is a side effect of some mild rejection of the bone marrow transplant (graft Vs host desease). This is to be expected and 'a but of it is good' as it proves things are working well.

She also has her bone marrow biopsy test results which where emailed from Kings. A month ago they showed that her new bone marrow was 58% of all the marrow (the rest being her old stuff coming back) They had hoped that the new stuff would have risen to the mid 80% by now, instead it has gone down a tad to 52%. So she will go with me to Kings on Tuesday / Wednesday and they will probably give her a top up of the transplant - this will only take an hour and not require chemo etc.


They let her out of Derriford Hospital yesterday for a few hours - change of scenery, bath, see the kids and a meal. She went back in at 9:00 p.m. Today they have done the same thing - which is nice for her. It also means that she has to do some exercise walking to the car, which she needs as she is very weak from not eating and losing too much from the other end

She is looking a lot better than earlier in the week, eating and drinking better, and was feeling 'locked in' where she was. We take her back in later this evening.
The kids are not getting much of a week - their half term. But this morning Barbara and I took some school children around the farm, seeing chickens, goats, cattle, sheep, a hare, a buzzard, lots of things we grow, and then we cooked some potatoes and meat for their lunch. The children came with them and had a lovely time. They both got a new computer game a couple of days ago - so all was not too bad

Ros is still not well

She came in on Saturday, and they still have not found out what is wrong with her. They have taken loads of tests. She is not eating, drinking a bit, is having hydration through a drip, and is being sick and having diarrhoea
The worrying thing is that last night, after days of multiple antibiotics intravenously, she got a temperature of 38.9C - which is not good.
We are going to ask them to liaise with Kings, in case they have any ideas

Picture Taken Sunday when on Oxygen

Her blood test results seem fine though. She was only on oxygen for half a day earlier in the week. Yesterday she was a lot better in her self - drinking a lot more, including high energy drinks. She should have the results of her bone marrow test, taken three weeks ago, by next Tuesday when we were both due to go up by train to Kings. I think that will be post phoned or done by video link if they can do their end

It would be nice if she could come out of isolation and go and see the new art display in the hospital

Roz is back in hospital

Roz is now over 100 days after transplant and was doing really well. She came down with a low grade tummy upset, then sickness and diahorria and eventually with a high temperature.
So last night she was admitted, and put on intravenous antibiotics, rehydration, ... , and now oxygen

She expects to be in for two or three days, all being well.
The kids are on half term, so they will probably come back to the farm until Roz feels very much better - she could not cope at home with Steve working


I had to have a tooth out this week, and thought I might be admitted. The simple extract turned out to be 1 1/2 hour ordeal with two dentists, followed by a £100 parking fine for over running my ticket. Luckily the heavy duty antibiotics they gave me before and after seem to stop infection

Done frommy Iphone

Day 98 - The Hickman line comes out

Last week Roz and I had our bone marrow tests. Afterwards we did some shopping in London and had lunch and afternoon tea in John Lewis. That is the first time Roz has been able to have a meal out - given the smell of which had been making her nauseous. It was a very long and tiring day, as we had reserved 4 hours in case she needed any treatment - which she did not need

Yesterday Roz went to the consultant in Plymouth and she said that Roz need only come to clinics every two weeks, instead of every week.


She still needs regular blood tests just in case the  CMV comes back and to monitor rejection

Both hospitals agree that the Hickman line can come out - so that is coming out today. Another major milestone, which will remove another potential source of infection. It does however mean that blood tests etc will need a needle in her, like normal folk.

Our friends from the States left today after we all had had a great time - even though the weather was awful. We took them to see Roz and the family at the weekend. We had a lovely lunch in Tavistock, and then after a bit of shopping had afternoon tea in the Bedford hotel. Lois had to check out the 'Candy shop' for her daughter back in the States - seen her getting help from Isabel. Then we played with the kids and chatted back home.

Roz still needs a lot of help, so Steve's mum has been down all week - which is a big help


Roz's son has met the Doctor and has a blood test - waiting results. He seems a lot happier.

I am still much the same - except I keep getting Gout, which is very painful, and the painkillers that deal with it inhibit white blood cell production !! I also broke a tooth which needs extraction - but the doctors think I can manage that, even with neutrophils at .6.

A major milestone for Rosalind

Last week was a major milestone. Roz was going anemic and the doctors thought she needed a blood transfusion, but they took a considered view and did not give her it. The reason was that last week was when Roz came off the anti-rejection drugs. These suppress the Bone Marrow production. She has also gone to a much reduced level of the anti-viral tablets - which also suppress the bone marrow. So the thought was that her new bone marrow should be given a chance.

It has done well, and she has not needed the transfusion - and is looking well.

However, this is a time to be very wary, as host Vs graft (or vice versa) disease can appear and need to be managed. So yesterday and today when she got a mild dose of diarrhoea she immediately rang both hospitals to check - they both agreed to not worry and test her tomorrow - Wednesday

So tomorrow Roz and I both have scheduled bone marrow biopsies, blood tests, and Roz meets the consultant at Kings. We arrived at Robert and Jessica's a couple of hours ago, had a nice meal and chat. They got engaged at Christmas - the whole family is delighted.

The photo below was taken a few days ago in Roz's local town of Tavistock, when we all went to do a few hours shopping

Tomorrow is also a good day, as very old (in the sense of know them a long time ) and dear friends of ours from San Francisco are coming to stay with us for 10 days or so. Our first visitors besides immediate family for a year - and we hope to get a few days off as holiday