Wednesday 2nd September

Back on the treatment today which all went fine. Martina, the anaesthetist mentioned about the possibility of actually seeing the machine where Toby has the treatment, and suggests we speak to the doctor about it. They used to do it for all parents but since they they are increasingly busy and finding it harder to fit in for everyone. We see the doctor, Adrian Staab, another of the authors of 'that' research journal. However he's full of cold, so he stays at a distance and we decide to leave it until tomorrow before asking about it!

Dad noted the PSI centre seems very similar to the ILL in Grenoble, somewhere he visited while still working (Physics dept at Warwick University). The main difference seems to be that the ILL Grenoble deal in neutrons and PSI deal in protons!

Sam is most definitely more interested in watching the videos on offer when Toby wakes up. The novelty of seeing him asleep has worn off and 'Kipper' is more interesting. Last week it was 'Mausi' (or for those of you with young children that's actually 'Maisy' !) Having said all of this, Sam started reeling off his numbers in german today, unprompted! They say to start young with language don't they? Not sure sitting him in front of a german video all the time would count! Interestingly, the fact the programmes are all in german seems to have passed him by!

The weather has changed and it feels more like autumn today. I had an hour to myself while Dad and Rona entertained both the boys (musical statues I believe!) I dived under the duvet and had an hour of shut eye. Pure bliss.

Tuesday 1st September

No treatment but Tuesday is chemo day so off to the Kinderspital. We arrived an hour before our appointment, so they could take blood and get results in time for the main appointment.

We have to go to the laboratory area in the basement of the hospital to drop blood off for testing normally, but with no treatment today (they take the blood sample) we needed to get the hospital to take the blood. Only problem seemed to be that the staff couldn't agree on who would take Toby's blood as 12.30 was their lunch break. ('Computer says no' again!!) Four of them walked off down the corridor within a minute of our request, clearly for lunch. 20 minutes later and 20 minutes of a 2 and 4 year old running around, someone realised what had happened and apologised profusely before taking his blood. The finger prick route is great for not taking more blood than is absolutely necessary, but poor Toby has finally got used to his wigglies being used and then they go and use a different method. Not happy at all, but only for the minute or so it took. The promise of a plaster was no motivation for him, but the offer of a sweet turned the cry into a sob into silence.

This time the blood results looked much better. 2.4 Neutrophils, 12.4 Haemoglobin. Platelsts were fine in the 400's. So, he was OK for chemo. According to the protocol, they should reduce the amount of Vinorelbine for this cycle. They will also probably not give the 3rd dose, as protocol guidelines suggest but they'll review in the context of his blood count. In theory, given he had Vinblastine last time, we don't really know how that affected his bloods compared to the Vinorelbine.

The Vinorelibine was administered over a 5 minute period, during which time, both Toby and Sam were distracted with some little electronic toys.

Then we got the cyclophosphamide. Not in a bottle designed to last for 28 days like in England, but 7 days worth, pre-measured in syringes with caps on, wrapped in swaddling for transport! Just need to work out a routine for giving it to Toby daily, given he's nil by mouth in the mornings.

Then all done and with the weather still fantastic, we took a quick trip up the Seilbahn (2 min journey up the hill) for a fantastic view over Zurich, the Zurichsee, and to see as far as Mount Rigi.

Monday 31st August

No treatment today due to machine maintenance. After such a busy weekend, catching up on the mundane things like washing and food shopping were needed.

We'd hoped an extra day off the treatment may have helped the redness go down on Toby's skin, but I don't think an extra day is going to make much difference now. It's just permanently red. We are applying the cream regularly but it looks like the redness will now remain until after the treatment.

Kyle returned home this afternoon, with Sam staying in Switzerland this time. At 7pm the PSI called to say the machine was not working after it's maintenance day so tomorrow's treatment was cancelled.

Picked up Grandad and Rona at the airport. They've come to help out until Friday when Kyle is back.

Weekend of 29th/30th August

Decided we'd make the trip to Legoland in Germany. Although the boys would be too young for many of the rides, we'd been given a leaflet at the PSI which mentioned a sea life centre and a Bob der Baumeister 4D cinema feature thing!

The lego built cities fascinated the boys. I though they may have been a bit too passive for them, but they loved the detail, and could have spent the entire day in that section alone. Bob der Baumeister went down well, as did everything to be honest! Naturally, Kyle and the boys enjoyed the lego 'test centre' where you could build a tower out of lego and then press a button to see if it would survive the equivalent of an earthquake. Given Kyle is a civil engineer, you might be relieved to know he did actually manage to achieve this!

Friday 28th August

Treatment as before. A longer chat with the anaesthetist, (who was German and originally from Munich) confirmed our theories on Switzerland and gave a small insight into the swiss way of life. He's been in Zurich 3 years and still doesn't even attempt to speak Swiss German. It really is very different to Hoch Deutsch.

The weather was a little cooler and cloudier today. Crazy golf in the local park with the boys was a nice way to spend the afternoon. Toby is yet to grasp the concept of using the club to get the ball in the hole. His attitude seemed to be, bit it once, pick it up and carry it to the hole and then knock in with the club from a distance of about 1 cm away!!!

Thursday 27th August

Another day with treatment going according to plan. Oce Toby comes round after his anaesthetic, the mood lifts considerably as thoughts can turn to a few hours of our own time.

The weather is still good out here (c. 28 degrees and sunny) so we spent the afternoon at the outdoor pool again. Toby was better this time and more content splashing in and around the water rather than being intent on full immersion!

Wednesday 26th August

Treatment all as usual. Skin seems to be redder still and I think it's fair to say now this is now due to the radiation rather than the plaster holding his eyes open. We asked to see some pictures of how the proton beams are being aimed at Toby. The best pictures (3D) are only on their computers but we did get to see a 2D image, in his notes. One beam direction is from straight on in front of his eye. The other is from the side, pointing towards the inner corner of his right eye, adjacent to the nose bone. Perhaps unsurprising as this was where the cancer started.

We could clearly see how it completely misses his brain. What was not so good, was the fact they needed to irradiate behind his eye. Something we weren't aware of until now, but will undoubtedly be due to how the cancer spread in the weeks between diagnosis and initial biopsy and the surgery and chemo starting which was 3 weeks later. Not long, but long enough for it to have grown from the size of a pea to the size of a golfball.

They are not concerned about the optic nerve and have been able to reduce the dose around the lacrimal gland, which is responsible for tear production. Sounds relatively unimportant in the scheme of things, but a dry eye can be so painful, that removal of the eye is often needed. Fingers crossed is all we can do on this one.

Seeing all of this reminded me about how long term his follow up will be. Whether it will involve an occasional visit out here again or just copies of his check ups at QMC I don't know, but the contact will continue for years, of that I'm sure.

In the afternoon, all 4 of us went for a bike ride. Sam now rides on a 'tag along' bike and is increasingly heavy for Kyle to pull along. Toby is in a seat on the back of my bike and heavy enough, but Sam now rides on a 'tag along' attachment to Kyle's bike. Let's just say an hour out on the bike left him 800 calories lighter!

Tuesday 25th August

Treatment went ahead as usual. The weekly interview with the research team also went well, although with nothing new to report really. The catch up with the consultant was the same. The same questions seem to get asked every week, with me feeling as if I'm repeating the same answers. Not sure whether this is a good thing (i.e. things haven't got any worse!) or whether they are expecting more detail...

Chemo day today so straight to the Kinderpsital post proton therapy, to drop bloods in for testing. Within 20 minutes the results are available in the day care clinic, and we get the news that his blood count is STILL too low to start the next lot of chemo. That means a quick exit, but another nagging worry about whether this is too long to be without the chemo...

The boys are desperate to go on a tram (having been so deprived to never have been on the Nottingham tram even!) so we walk down the hill from the hospital and catch the tram into the downtown area. Yet again, they loved it as only toddlers and pre-schoolers can!

Monday 24 August

A pretty standard day in the life of proton therapy treatment. Treatment started on time, but with Kyle being out this week, Toby was clear he wanted Daddy in with him when it was time for his anaesthetic! A different anaesthetist this week, from the Kinderspital. All of them have been so nice, attentive and interested.

All went well, followed by a relaxed afternoon in Waldshut - a local town - that Kyle and Sam hadn't visited before. A trip to the park was included of course.