A happy day

On 19th of March the family all met up at the house and then went off to dinner at a local restaurant. I had become and 'old age pensioner' (65 years old a few days earlier) so it was a nice time to relax on a lovely day in South Devon

The kids had a lovely time running around the grounds

all very confusing

At Kings they did not, in the end, do a top up stem cell infusion for Rosalind.
They had found that her white cells were increasing very well, and on detailed examination were from her new bone marrow - which is very good.

Her red cells are still low, and they seem to be mainly from her old bone marrow - rejuvenated a bit. They also have a high iron (ferritin) level much higher than mine - 2000. This high level will be OK for a while, after which they can get it down with the normal well trained leeches!


So they have taken more tests, lowered the use of certain drugs that could be inhibiting the new bone marrow and red cell production a bit and will see again in tow weeks

So overall it is good news

Ros and her mum then spent a few hours in London before coming home. It was nice as they met up with Ros's brother Simon and girl friend Sari and all came back down on the train together

Perecentage of Donor Bone Marrow

A few weeks after her transplant Roz's new bone marrow was 58% of the whole. The second bone marrow test showed it had gone down to 52%, so ten days ago King's did a special blood test that showed the % was now done to 20%.

As a result Kings will do a bone marrow top up from the original donor next Wednesday. Kings have enough on ice to do up to 6 top ups, and seemingly it is quite common.

It is just like having a blood transfusion and only take an hour or so as an outpatient.

So Barbara will take Ros down next week

Barbara and I went to a funeral of a good friend who died at 48years old after 7 years fighting a brain tumour - which came back. He leaves a wife and son aged 17.

Apart from that we are all feeling fine and realively up beat

What a bugger

Well the bad news is that my (Richard's) MDS has progressed - which is the technical term for got worse. My blasts have gone from normal (2%) to 8%. Between 5% and 10% is called RAEB-1 (refractory anaemia with excess blasts-1). This is what Ros had originally over a year ago - it then progressed to RAEB 2 which is between 10% and 20%. If it goes >20%, then you have leukaemia as well)

The situation for me is therefore to have bone marrow tests more frequently and monitor that and my blood tests more carefully - watch and wait
In addition as my iron level (ferritin level) is in the 400 region, which they had stabilised me at deliberately, they will now try and get it down closer to 50 (proper normal). The reason for this is that any drugs, chemo, transplant or other treatment they might give me in the future may well involve a series of blood transfusions. Each transfusion would automatically give me iron from someone else. Many MDS and leukaemia patients have an excess iron problem purely from too many transfusion - a ferritin level over 1500 or so can effect your heart, lungs or other major organs. So they immediately whisked me off for more blood letting. We are going to ask them if there is another way of getting my ferritin level down, as although this way is easy it does put extra strain on my poorly bone marrow as it repalces the blood - and just maybe that is what has triggered the 'blast'-ed problem.

The good news for me is that my iron level is good and since I had an infected tooth removed my blood results have got better, and I feel a lot better - less fatigue etc. Weird ain't it? Anyway I shall move forward with this new situation with a postive attitude.

Roz

The good news for Roz is that she is eating really well and they think things are going well, and they have the balance of treatment fine. Her blood results are good. They have taken a set of special blood tests to check how well her new bone marrow is doing - results in a couple of weeks