It’s yet to be confirmed officially but unofficially I’ve been informed that it is the belief of the medical team that the transplant (graft) has not worked. Following in the trend of the +30 and the XY FISH, the +60 showed a continuing reduction in the presence of my donor, approximately 20%. Taking into account that I’m now at +85, logic suggests the presence of the donor will be even less and most likely beyond salvaging. Therefore another chimerism test was taken to access the current levels of the two of us. It is anticipated that this test will confirm the graft hasn’t worked; already the medical team has started to put measures in place based on a worst case result. Anthony Nolan has been informed and in turn they have contacted potential donors.
Although the chimerism test was marked as urgent, it will take a couple of weeks for the results to come through due to the complexity of the test. In the meantime I’m being weaned off cyclosporine in case there is a chance, all be it very slight, that he might to make a comeback. Weaning off the cyclosporine is also in line with what would happen should the final decision be made that I am officially to have another transplant. Once I’m off the cyclosporine, there is a six week period between being off the drug and proceeding with the next transplant which is likely to take place at the end of January.
A number of factors regards the transplant will be reviewed before going ahead with it. Such as, stronger chemo, maybe even some irradiation, maybe changes to my drug regime etc. A steel bridge can be engineered with precision but the human body isn’t something which is so predictable. We don’t all respond in the same way to drugs, alcohol, sunlight etc. Hence, why the conditions of my transplant will be carefully reviewed. I am under no illusion that should it go ahead, it will be a much tougher regime than the one I went through in August.
Remember that deck of cards I mentioned in my last blog? It’s safe to say, I’m on hold regards picking up the cards. Should the transplant occur in January 2016 and work, then it will probably be May before I’m in a position to consider ‘getting on with life’. To describe the situation as frustrating would be an understatement, especially when I feel well within myself. I know should the latest chimerism test come back as expected, I have to just suck up my frustration, wait patiently and get on with the procedure. I’m in no doubt that to go ahead with the procedure would be the right thing to do.
It’s not just back to the drawing board with regards the transplant, I have to review my finances as it’s looking as if I won’t be able to return to work until May. That will mean that I won’t have worked and therefore earnt a penny for over twelve months. It’s a heavy burden juggling the day to day stresses of life at the same time as having your health as a twenty four hour job. For now I shall leave that woe until the next step is ratified.
I am deeply disappointed, however I view this as a setback and up until now I’ve been very fortunate to have not had any setbacks. I despise the thought of another Hickman line, I’m gutted that just as my hair is returning it will go overnight with the chemo, I’m nervous about how strong the chemo will be but I figure I’ve been endured it before so I can endure again. The staff at Barts are lovely, they’ll hold my hand throughout and do their upmost to make this transplant work.
Whilst I wait for all the above to unfold, I shall make sure my time is fruitful by continuing to work on plans to raise money for Anthony Nolan, after all this is will their second precious gift of ‘hope’ to me. There was a silly saying when I was a child ‘first the worst, second the best’ I’m hoping that is the case because the third had a hairy chest!!!
Christmas cake to be raffled off to raise funds for Anthony Nolan
Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at: http://www.justgiving.com/Rachel-Jackson13