September 24, 09 – Jake 6

Dear Friends,

At last some good news – after the gruelling week we described in the last letter we needed some – Jacob’s intensive chemotherapy for five and a half weeks has left him in remission.  This induced remission was the intention of the first tranche of treatment and is sadly not achieved by all sufferers from ALL (Acute Lymphoblastic Leukaemia). The steroids which had been badly affecting Jake’s concentration, thinking processes, memory, sequencing and blood sugar were slowly tailed off and very slowly he is now returning to himself. The hospital has now allowed him home with a hamper of continuing drugs and insulin injections to await the second tranche of chemotherapy which will start in a week’s time and mostly be administered from the Kent and Canterbury Hospital 200 yards up the road from us.  Jake will remain a patient of the Royal Marsden hospital and have to return there every Monday for lumbar punctures, blood tests and follow-up. This sequence of drugs will be different and we hope not so intense as the first lot.  It will last until November when the next phase will be decided.

We are sure it takes little imagination to share in the horror of the last month and again we all thank you from the depth of our hearts, for the hundreds of expressions of that empathy.  It is clear to us from your looks, gestures, words and actions that one really does not have to have shared this experience to be highly empathic. The sense of belonging to a community of sympathetic friends is a huge support to us – in many senses (outside the technical expertise of the doctors etc) we need no more help than that very palpable compassion.  Now we are home with Jacob we are starting to build a home life again in the house which initially felt lifeless and empty, but has very quickly burst into life again  We have to be neurotic about certain kinds of food, bacteria and germs and feel very vulnerable outside the protection of the hospital – like parents of a newborn on their first day home alone. Our children Ben Naomi and Esther have been absolutely crucial support to us.  The day before Cherry and Jake arrived home (I had been banished because of the suspicion of a cold),  saw Esther scrubbing down the kitchen, Matt (her husband ) shampooing carpets, Ben pulling up carpets and Naomi hoovering. Denzel and Ben lugged a Yamaha Clavinova (an electric piano loaned by Grenville our friend) around the block to install it in Jacob’s bedroom for those times when getting downstairs would be a problem. Denzel painted his room. Nana is bringing meals and transporting fruits and vegetables, Jane and Nadia our sisters and Mireille come bearing gifts of aromatherapy, massage, healing foods and wise words.  Family and friends have unquestionably become even more important to us.

Since Thursday when we arrived home, Jacob has shown great signs of progress each day – this morning he rushed downstairs, made a loaf of bread and asked I wanted a cup of tea, an everyday and simple question which filled me with hope and joy.  This afternoon he made a fruit loaf with his cousin Leo and learned how to use his new apple computer. This evening he managed to attend the first half of a concert he was supposed to have given in support of a local church restoration fund.  This busy day contrasts powerfully with those very recent days of monosyllables, confusion and little movement. Having last week only been able to play music already familiar to him, he is at this moment sight reading some Liszt (Benediction de Dieu dans la solitude ) already producing a moving account.

We know this progress is to a degree temporary and the next chemo will set him back again but it does give us confidence that he can return quickly to normal after such appalling onslaughts.  We will continue to depend on your unmistakable love and friendship and thank you (and God) again for it.

Love too from us,  Jonathan, Cherry and Jacob


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