September 12th, 09 – Jake 5

Dear All,

Thank you again for so many texts, emails, letters, cards and calls.  They mean so much to us – they bring both comfort and bridge us to another and more secure world. It’s been a very hard week for all of us.  We are still full time at the Royal Marsden Hospital in Sutton, Jake in a four-bedded ward, Cherry and I in ‘relatives accommodation’ which has been a  life saver – we are so grateful for this generous help.

Jake is suffering from astronomically high blood sugar, the result of the massive doses of steroids he’s been on. He had eventually to be rigged up to a continuous drip of insulin and checked day and night every hour to monitor the levels of glucose in his blood.  This additional blood check means the piercing of his finger hourly, so by now he has had more than 100 sharp finger pricks and yet is still playing the piano almost daily for an hour or so. With his declining energy levels this hour represents a monumental effort. Yesterday, Tom, a great young flautist and dear friend came to play with him in the upstairs chapel here and Jake’s insulin ran out in the middle of Bach’s E Minor sonata so sadly they had to stop and Tom had to leave before the insulin was replaced

Jacob has tolerated the most aggressive of chemotherapy drugs (a whole complex cocktail of them) pretty well but the steroids have generally been a pain – totally essential – but a pain. They have had the usual effect of blowing his face up. He has had his hair shaved off since it had begun falling out but since then the rate of hair-loss seems to have decreased. Jake is now slowly coming off the steroids but this has its own effects, he has now been confused, (even having difficulty sequencing a shower routine) depressed and silent for the last four or five days – only music providing any sense of normality – he still plays with accuracy, deep emotion and discipline even after hardly a verbal communication all day.  We are told that this is a common reaction to coming off the steroids and that the high blood sugar is also usually a temporary side effect – but you can imagine how worrying it all is.  Every day seems to bring its own new anxieties.  His blood immunity has remained relatively high and he has only needed transfusions of blood platelets and plasma to boost the clotting mechanism – again this is normal – indeed we had expected a number of full blood transfusions.

The nurses here and there seem dozens of them – continue just astonishingly caring and time-giving.  One (mother of four girls under six and also a qualified masseur) has just shown Cherry how to improve her ability at foot massage, and all are unstinting with their time and willingness to help. There has hardly been an exception. The ease with which this caring and time-generosity is given suggests it is part and parcel of the ethos of the whole place and other patients all say the same.  This example tells me that a positive, loving and generous atmosphere is just as possible in schools without any diminution of efficiency – indeed the ‘product’ here is all the more excellent and effective for it. Doctors too, Mark Ethell Jake’s main consultant whom he sees twice a week, with the usual entourage of silent, note-taking, juniors, gives as much time as we need, answers all questions authoritatively, clearly, sometimes amusingly but always sensitively and hugely comfortingly. His daily doctor, Raj Singha has just the same combination of giving and knowledge.  We have nothing but praise for the NHS here.

When Jake’s blood sugar is controlled (it’s presently very erratic even with the insulin drip) he will be discharged to return to Canterbury within a week. The date of release depends upon stable blood sugar, not getting some last minute infection and the results of a bone marrow biopsy. We will probably know more on Monday 14th. After return to Canterbury Jacob will enter stage two of his multi-stage, 166 week treatment and this will be largely based at the Kent and Canterbury Hospital just up the road from our house.  He will have four days of Chemo therapy there as an out patient and one day per week he returns here to the Marsden for lumbar punctures and other tests to see how its all going.

Christ Church University and St Edmund’s have been really kind and understanding to us throughout and are putting no pressure on us to return, but if all goes well then I expect to be in work on 17th and 18th helping with some staff development and Cherry will return on a part-time basis the next week. We will the share Jacob’s care at home with our jobs as best we can.

We have now been away from Canterbury since the beginning of July. We have learned so much from our 3 weeks in India and 6 weeks in hospital about human kindness and what is important in life that our experience has been positive as well as predominantly terrifying and uncertain.

With our love and thanks as always, keep up your positive thoughts and words. Jonathan, Cherry and Jake xxx

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