Tuesday 18th August

Back to a later start time for treatment today (10.15am), and that combined with a delay due to a technical hitch (read repair from that!) meant Toby didn't go under until gone 11.30.
In the hour we were waiting we had our weekly meeting with the research doctor. A different person to last week, but again, all in german, covering how Toby has been feeling.

In fact,he's been fine so far, with no pain (that he's told me of anyway), as active as normal, with no signs of undue tiredness, and his appetite remains normal. In fact the only thing that could be construed as different is that stubborness of his that seems to have multiplied since being here. Determined he can do everything, and that he wants to make the decision on when he does things. Discipline feels like it should be the last thing to have to cope with now, but I'm standing firm! No Roary the Racing Car on DVD yesterday for him as a result of this.

The red sunburnt looking cheek from last week went down over the weekend, but is back again this evening. He's getting a bit better about having the eye drops, but frankly has a long way to go on this.

The anaesthetist was also very chatty today, telling me lots about how the PSI works. It's actually a massive physics research institute that then sells their technology/discoveries/applications to industry, once they've been fine tuned. The treatment that Toby is having is not their main business, but his case is perfect for their research on the treatment method. Their latest research is into how to treat tumours that move ie in the lungs and breast. A proton therapy centre is due to open in Essen in Germany later this year, and one of the PSI founders of proton therapy treatment will return there, to where her family is. She left the PSI a couple of months ago, but is still retained on a consultancy basis. It's her name I recognised from some of the research papers we obtained when we first started researching proton therapy. Beate Timmerman. The expertise at PSI is clearly the best there is. Scandinavia are planning on having their own proton therapy centre, and on the news in the UK this morning, the British Government have announced their intention to build a centre in the UK. Hooray. Well done to Ros Barnes for lobbying on this. She sent her little boy to the U.S. for proton therapy treatment and has taken on the challenge to bring such a facility to the UK. She was also a huge help and support to us when we wanted to get an application in to the NHS

Our trip to the Kinderspital was therefore later than planned. The doctor did the usual checks, and questions (in german - that's 2 massive conversations for one day, a record so far I think). Then the blood results came through, showing a neutrophil count of 0.5. Even lower than last week, and now classed as neutropenic, despite having stopped the chemo as per the treatment protocol. I'd anticipated the count going up and us needing to call QMC in Nottingham to see if they had a view on whether we should restart chemo at this point in the cycle, but clearly no need. The doctor suggested, and I agreed, that chemo would not be a good idea right now. The proton therapy can knock the blood count, and still being quite early in the treatment, it's hard to know what is attributed to the proton therapy, and what is the chemo, or more likely what's the result form both together. Plan was to review again next week.