I’m tempted to put “ditto” for today’s entry. Not much has changed since the last one. Fabian’s blood counts remain doggedly in the doldrums, much like the economic forecast. I wish it were Robert Peston announcing the results; ‘So, we’ve seen a staggering increase of one trillion neutrophils’. Alas, then there is no immediate prospect of his homecoming but Fabian is showing fighting spirit. He’s had more celebrity encounters in the last week; comedian Tim Vine dropped by as did Fearne Cotton whom he described as ‘that woman on TV’. We’ve had the first formal discussion with the transplant team which was both scary and reassuring. The sheer volume of information to take on board is awesome. The NHS call it patient empowerment – and apparently we are now fully informed and able to give consent. To be fair, Lydia and I had both done our homework in preparation for this and were not as over-awed as might have been the case. It was Marie Curie who said; ‘nothing is to be feared, only understood’ and I agree knowledge is a good antidote to facing the unknown. But then another well-known person, Jesus, said; ‘do not be afraid, only believe’. Oleander, too has had her health checks and briefing about what she will undergo as Fabian’s donor. It’s no small undertaking for a 17 year old and she is handling it all herself in a very mature way which makes us proud. At this stage there preference is to use her since harvesting stem cells is easier and more productive with an older sibling. There may even be some spare for the Anthony Nolan bank! We do now know that she is CMV-ve whereas Fabian is CMV+ve which means that he carries a common virus which Oli does not and so will be at risk of catching the very infection post transplant that he currently has immunity against! There is a strange irony about this, but in such an event there would be ample treatment to deal with it. We are naturally most anxious about the total body irradiation (TBI) that is given during conditioning. This, as you would expect, causes the worst side effects but in the States, their leading transplantation unit no longer uses TBI and has shown improved cure rates. Over here it is still the norm and we would be ill-advised to question this. But we are quietly confident by the 3 positives in Fabian’s favour – a perfect sibling donor, good tolerance of treatment to date, age and clinical state (sorry, that’s 4 positives!).

Friday, November 11, 2011 7:44 PM, GMT

I usually wait until there is some exciting news to blog. But a week has passed and very little has happened. The slow wait for Fabian’s blood counts to rise seems inexorable. Seven straight days with zero neutrophils and then a teasing glimmer of hope when it rose to 0.1 only to fall back again the following day. This outcome after a heavy course of cytarabine was always predicted (doctors can be so right sometimes) but we are thankful that Fabian has remained so well throughout, although at the time of writing he has just spiked a couple of temperatures so the ubiquitous antibiotics are back on stream. In the main, Lydia stays with Fabian whilst I am back at work having the hard life!! It hardly seems two weeks since her own operation and she is recovering well but will probably have to bring the ’70’s choker back into fashion until her scar heals. Family separation for many days, and now weeks presents its own challenges, compounded recently by the fact that the WiFi was down in the ward rendering skype communication inoperable (and the mobile signal is pitiful). Preparations for the transplant are underway in terms of us meeting the team and specialist nurses to discuss the procedure. A more colourful description though, can be gained from meeting other parents in the kitchen… The transplant date has predictably changed – now much closer to Christmas. What joy! We’ve passed a milestone this month with the 500th visit to this site which is testament to your continued faithfulness (and tenacity!). Still, Fabian’s US friend Riley is closer to 10,000 visits, so we have a way to go!!

Friday, November 4, 2011 9:37 PM, GMT
We’ve had to face a number of medical results over the last 5 years, most of them bad – the initial diagnosis, the positive MRD meaning higher risk category, the relapse and the failure to reach remission. But this week we can celebrate two results that have been a huge relief. Firstly, the final tests on Fabian’s recent aspirate confirmed he is in a sufficient state of remission to avoid an additional, heavy block of chemo and he remains on track for transplant in December. This will also give him more time at home beforehand which as you know by now is always preferable. Secondly and thankfully, the result of Lydia’s thyroid lumpectomy has proved it was benign and she has been given the all clear. This of course is wonderful news, but the sheer relief that there was at least no further cancer in the family brought us both to tears and no doubt perplexed the surgeon who was probably expecting a ‘hi-five’. I think the emotional strain of the past few months, with it’s highs and lows is catching up with us, but a decent capuccino and prayer of thanks afterwards and our batteries feel recharged. So back to Fabian, still in the Marsden after having completed the intensification block of treatment but not clinically well enough to go home. He has endured a terrible irritation around his eyes due to en eye drop that was needed to counteract a known side effect. That has now subsided but his neutrophils are south of 0.1 and he’s needed two blood transfusions in the past 72 hours. Nowadays, the ward is busier with a seeming conveyor belt of children at various stages of transplant. One dear lady has just emerged with her son after 42 days in isolation. Her recommendation to us was, ‘buy your own fridge!’. Tomorrow the children have a bonfire night party but without fireworks or a bonfire. A crudely-made ‘guy’ sits in the corridor, resplendent in doctors’ coat and surgical gloves. Ben turns 15 on Saturday. It’ll be one of the first birthdays when we have not all been together as a family as I don’t think he’s convinced about spending his day at the hospital! Despite present demands, we also have to think and plan for Fabian’s future, in particular his education during periods at home. I’m appalled to date at how problematic and bureaucratic the process has been to secure one to one tuition for him which he is entitled to by virtue of his medical condition. A great deal of tenacity and patience is needed – don’t they know that Fabian has royal backing?? And ladies, get your copy of ‘Woman’s Own’ this week to see our superhero in print.

Friday, October 28, 2011 8:24 PM, BST
This blog has always been focussed on Fabian’s journey, but I’ll also cover other family matters and today, that is to tell you about Lydia’s surgery. I have to confess the last 48 hours have been entirely forgettable – and I wasn’t the one having surgery! We had a 6.30am start on the day of her operation to check in to pre admission at the Royal Marsden, Fulham, a rather imposing building, set incongruously amongst the fashion shops of Chelsea. We had a brief discussion with the surgical team about the procedure before Lydia donned the somewhat unfashionable theatre gown (one size fits all!) and did her make-up (no, not really). The op was planned for early afternoon so I hot-footed back home in order to collect Fabian where he was due to be at the sister hospital in Sutton. This entirely confused my satnav, not knowing which Marsden destination applied. There was the usual welcome for him on arrival; cook Jacquie with the menu, nurse Tania to do the obs and a doctor looking important. Oli had agreed (coerced!) to be on duty and I was able to head back to Chelsea, hoping not to miss Lydia coming out of recovery. However, she was held there a few hours longer than anticipated so I got a parking ticket instead. Those of you who have undergone a full anaesthetic and surgery will be only too aware that one never looks one’s best immediately post-op. Still, it was very upsetting to see my dearest in such a poorly condition and my usual stoicism somewhat failed me. The operation, though had gone as well as expected and the Sweeney Todd-sized gash she had feared was thankfully a small(ish) incision which we are assured will blend in with the natural skin folds. Results of the biopsy are due in a week and we remain confident this will prove to be benign. That night for her on the ward could best be described as a ‘Night at the Museum’ with all the groans, cries and comings and going. Thankfully, the doctors gave the all clear today so half the family are now back at home, figuring out the care rota for next week. Apparently I still have a job to do, and even a looming Ofsted inspection for which I must prepare. Thank you to the many who have sent us messages of encouragement at this time. “Those who are for us are greater than those who are against us”.

Wednesday, October 26, 2011 4:43 PM, BST
I’m here at Kingston Hospital where Fabian is having his regular ambisone infusion. Being treated like a royal by the nurses is going down well with him; food, drink, DVDs – all are provided at his request! We were surprised by his unexpected discharge from the Marsden on Monday night. He’d remained so well throughout the first course of cytarabine he’s been allowed home in between blocks, the next one beginning tomorrow. He’s back on the ward now, rather than in isolation and I’d forgotten how disruptive that can be to a nights sleep when I stayed last weekend. Intermittent beeping from intravenous pumps, crying babies, lights on and off are just some examples. The new £18 million Children’s unit is now fully operational and we could not be in a more state of the art centre. We heard today the provisional date for Fabian’s transplant – 8th December – T Day. His latest marrow results are still incomplete and depending on the morphology test, he may be required to have an additional intensive chemo block that would push that date back by a month. I’m guessing though, that Christmas will be spent in isolation. I only hope Santa scrubs up before permeating the lead-lined walls of the radiation suite.
Lyd’s own op takes place in the morning so it goes without saying she would value your thoughts and prayers. A steady stream of prepared meals given by friends means we have a well stocked freezer to see us through a week without Mum’s cooking. To those of you enjoying a half term break, tell me what it feels like!
Adieu et mon droit.