Just after I sent the last one we were given the unwelcome news from the CT scan that Jake has two areas of infection on his brain and some swelling which is the probable cause of the fits. He will probably have to go to St Georges hospital for a biopsy and treatment with special antibiotics…

Sorry today’s news is not good. Having thought that the roller coaster was slowing down after a week in intensive care and the gradual control of his lung infection, Jacob has now been faced with three fits of increasing magnitude.  The awfulness is very hard to bear. We are at a loss to find anything to say…

Thanks again for many kind messages and gifts. You’re all so good at thinking of positive and uplifting things to say, we know how difficult it is and really don’t expect you to keep racking your brains for something else. I’m sure we couldn’t do it. I’m not sure that we need to keep up…

I hope this is not too much information too often for you. It’s hard to pitch it right, so please don’t feel burdened by too much and please don’t think you have to think of something to reply with. We know you care! Much better news today. White cells up and infection levels down so…

Do we dare feel some cautious optimism here? Jake’s white cells (the ones that fight infection) are up a little bit. Although he is still totally dependent on the various different types of oxygen masks which alternate during the day, the percentage has been reduced a little bit. He is able to be out of…

Dear All, We have decided to write a quick daily update on Jacob’s condition because it is so hard to keep up with the calls and texts.  Please don’t feel you have to reply. We know and feel the huge quantities of love and positive thought and prayer all around us. Jake had a fairly…

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…

We are sorry to tell you that Jacob has had a sudden and very strong reaction to one of the drugs that he has to take which has left him in a deep and dangerous depression. He is  isolated, sad and anxious, and finds any kind of social situation confusing and frightening. We are with him…

Please could you pass on many thanks to Lovanne and Carl Whatley for the very kind parcel for Jake. He especially liked the holding cross.  A friend lent him one when he was first ill, so he is particularly pleased to have his own and very kind of them to send it. He takes it…

Christmas 2009 Dear Friends, Please imagine you have an immense, love filled, fluffy, wise men and robin bedecked card arriving on time on your doorstep for christmas, that bursts into loud organ music as you prize it apart. Instead of this we have decided to send the money we would have spent on cards to the…

Dear friends, A brief update about Jake’s and our progress in the last month is well overdue. He has been at home for most of the past month now after our scare of late October. Jake’s chemotherapy regime has marched on with the expected ups and downs all these different poisons produce. He was on…

Jacob is relieved to have a week’s break from chemotherapy and instantly felt better. He hasn’t had another seizure but of course we are all very nervous in case it happens again, so are having to arrange our lives for now so that there is always someone with him. This isn’t great for a 20 year old…

Dear everyone, Jacob’s first bout of treatment in hospital ended in the remission that was hoped for. He had a couple of weeks break and has now started the next. These 4 weeks of chemotherapy have meant driving 150 miles daily up the M25 for treatment lasting anything from half an hour up to 10…

Dear Friends, Just an update since we have not written for a few weeks, largely because nothing new has happened. Jake has been continuing with a very intensive burst of Chemotherapy – his current ‘regimen’ is a four week unit where he takes three different Chemo drugs and has a lumber puncture at the beginning…

Jacob is doing well. He has had 2 1/2 weeks off chemo and felt tired but well and has had a lovely time with friends and family pushing the limits of what is allowed for a boy that should really be staying away from germs inside. Thank goodness for the summer sun and warm pub…

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…

Jacob does his best almost all the time to lighten the mood, allay our badly hidden anxieties and maintain positivity. His piano playing has gained a wonderful serenity and space together with a deep reflectiveness and insight, it’s wonderful to hear. Brahms intermezzi op 117, and Faure’s 1st and 4th Nocturnes, alternate with miraculous renditions…

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…

To Our Dear friends and relatives Although just a week since we last wrote it seems like a year. Not that much has happened but each day is crammed full of its own little hurdles, discomforts, distractions, institutional rituals and fears.  Jacob has been leading us in most matters. He does his best almost all the…

Jake has been in the Marsden for a whole week now and it’s beginning to feel almost like home. He is the most amazing boy with such a positive attitude it puts us all to shame. He has had several doses of chemotherapy which don’t seem to have had any adverse effects so far. He…