February 9th, 10 – Jake 11
Our dear friends. not good news at the moment; we are afraid.

Jake has had the most appalling few weeks and is currently in intensive care in a critical condition having serious difficulty with breathing because of an as yet undiagnosed infection in his lungs. He was ambulanced over to the other Royal Marsden in Fulham last night.

Because he has no white cells at all at the moment due to the intense chemo he has been having, he has no internal natural resources with which to fight infection and none of the antibiotics etc have had any effect yet. Currently he is receiving 1:1 support and more from a wonderful team of experts. His whole head is encased in a Buzz lightyear plastic bubble which delivers and maximises the oxygen entering his bloodstream. This is dreadfully uncomfortable, hot and claustrophobic and makes eating, drinking, sleep and talking a real challenge. He begs to have it taken off when he can’t bear it any more, but in the few minutes that it’s off, his oxygen drops and he has to go in again.

Our leaving the Marsden at Sutton generated a tour de force of caring, from the chief consultant through every nurse, domestic and receptionist, all giving us genuine sympathy, encouragement and open ended time. It’s hard to imagine a kinder set of people there or in the new hospital. They even arranged for a taxi here and accomodation nearby for us.

Jake had already had a really terrible week of severe depression caused by high doses of steroids that are part of his treatment. This happens in just a few cases and of course we didn’t imagine it would happen to him. The week before he had to be admitted for dreadful stomach and hip pain caused by the same drug. They have now been stopped, but this has long term issues for him as they are an essential component of his leukaemia treatment. He has had some essential, but hugely unpleasant treatment in the past few days.

The hope now is that the source of his infection will quickly be found and then targeted treatment (rather than the massive blanket treatment he is currently receiving) can be started. If his breathing continues to deteriorate he will have to be placed on a ventilator, which you can imagine is a very scary prospect for us all.

The treatment and care are absolutely marvellous here, and the detail and sophistication is both amazing and constant. He is definitely in the right place and we feel overwhelmingly grateful that we live in this country at this time. What is buoying us all up however is the knowledge that there are huge numbers of you thinking and praying with us and in some way sharing this frightening situation. Jake sends his love with ours,

Jonathan, Cherry, Jake and the rest of the Barnes family

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