August 14th, 10 – Jake 28

Our Dear Friends,

We must update you on Jacob’s progress and are sorry to have left it so long. In short the news is mostly very good and we are mightily relieved after a year of dramatic swings of emotion, to be on slightly more steady ground. Jacob had a stem cell transplant on June 24th, receiving stem cells from his brother Ben’s blood. By the 30th June those stem cells had begin engrafting within Jacob’s bone marrow (where his leukaemia cells had been developing in the past) and completely replacing it.  The process is nothing short of miraculous. A small sub-section of Ben’s blood (the stem cells and some plasma) is simply dripped into Jacob’s blood stream and somehow it knows to go to the areas of Jacobs body (the bone marrow, and various other soft tissues) which had that week been completely destroyed by intense, full-body radiation. There in this foreign place Ben’s stem cells transformed into bone marrow which within ten days was producing high quality un-diseased blood, so good that the awful and very painful side effects of total body irradiation were healed up and Jake was discharged.  We don’t begin to understand the science involved, but the results were astonishing and humbling.  On the first biopsy to check on the progress of the transplant they told us that there had been a 100% engraftment – in other words Jake’s immune system was now Ben’s.  By no means all transplants are so quickly successful. Jake now has two DNAs, Ben’s in his blood and bone marrow, and his own elsewhere – amazing.

The so far successful transplant is not the end of the story however. First Jake’s new immune system is very very weak, rather like a new born babe’s, and will have to develop its own resistance and be once again inoculated against all the diseases (Polio, MMR, smallpox etc ) that children are inoculated against.  Secondly because of the compromised immune system he still is very easily infected and all infections are serious for him, (a minor cold last week had him hospitalised for four days).  Thirdly, the success of the engraftment is partly because of the use of anti rejection drugs which lower the resistance of the body so that Jake’s body does not fight off Ben’s stem cells.  Gradually over the next few weeks these anti rejection drugs will be withdrawn, this will possibly mean that Jake’s body will try to reject Ben’s cells, giving Jake an illness called Graft versus Host Disease (GvHD) which can be serious. So we have continued worries as you can imagine, but Jake has been very strong and the doctors and nurses are very pleased with his progress.

His poor feet have been the main cause for concern recently. The nerves supplying his feel have been seriously damaged by one of the chemotherapies he endured earlier and give him immense neuropathic pain all over both feet. This makes walking and standing very painful and unbalanced. Pain killing drugs have largely hidden this pain over the last few days and he is greatly relieved to be able to walk short distances now.  This pain however could continue for quite a long time we are told. He is still on a complex collection of drugs for all sorts of things.

His brain lesion actually and wonderfully shrunk to very small proportions during the transplant and most of the swelling has gone.  The lesion now presents much less of a threat, though there are still many medications to treat it and the danger of further fits. Jake is back to playing the piano big time now and on his new grand piano he is working hard to strengthen his weaker left hand with left hand studies but also managing to sneak in the odd Chopin ballade or Bach prelude and fugue. The progress is very clear now and his playing is deeply moving to us all of course. Music making seems more healing than ever.

Also healing has been the massive consciousness of the love and warm thoughts of literally hundreds of friends and relatives who have faithfully supported us all with kind words and little and big deeds.  The kind enquiries of passing acquaintances around Canterbury and well beyond, have continually recharged our faith in the goodness of human nature and the many cards and letters you have sent are most gratefully read by all of us. We feel both humbled and enriched by such outpourings of care, thank you. Our workplaces, St Edmund’s and Christ Church continue to  be very supportive.

We continue to be hugely impressed by the work of the Marsden hospital, whose workers at every level still move us by their care and consistency.  The kindness, knowledge, skill and unflappability of doctors, nurses, therapists and social workers is still matched by that of the generous cleaners, workpeople and receptionists. Amongst many generous gifts to the Marsden generated by Jacob’s experience there, has been our brother in law Sam’s recently completed 450 kilometer sponsored cycle ride across Norway.  The proceeds of this immensely gruelling journey, and a recent concert given by the Ryder Family at Orange Street and the Maridadi choir all go towards equipping the new teenage cancer unit at the Marsden. If any one else wants to donate to this please follow the link below:

Thank you for supporting us all,

Jonathan, Cherry and Jacob


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