Wendy'd gone out for the evening and I'd just got Caitlin off to bed when I got 'the call'. Our consultant Dr Colin Steward rang to say they'd had the results back from Great Ormond Street. It confirmed Proton pump failure. In his usual 'pull no punches' way he said this meant that Chemo therapy and a Bone Marrow transplant would have to be very aggressive. He was unwilling to subject Imogen to that as on every previous occasion that it has been tried it has been unsuccessful. That means exactly what you think it means.
To further complicate matters Imogen has a very rare tissue type so the chances of getting a match are very remote. If they try for a partial match then we're back to drug therapy, rejection and following complications. It's a lose/lose scenario and every one of the transplant team are unwilling recommend the operation.
In his words he can't provide quality of life, so that leaves us with 'palliative' type care. That means treat symptoms and make comfortable. He was keen that we pursue the avenues we're exploring i.e.sight and hearing assistance, physiotherapists, dietitians etc and he would arrange a face to face meeting with us.
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