Tuesday 15th September - final day of treatment

Can't quite believe this day has come.  After so long working towards this, it was certainly a weird feeling, walking away for the last time.  The only analogy that springs to mind, is that feeling after finishing your exams.  Like a weight has lifted off your shoulders, and that you are free to do what you want with your time again.

When Toby was having his treatment there was a meeting with one of the team, asking about how they could make things better, and how we felt things had gone.  We really didn't have a bad word to say.  If we ever end up in the business of recommending these things, the PSI would certainly get our vote.  We also had a closing meeting with the doctors who re-iterated what some of the long term effects might be and also how the short term effects should reduce over time.  They seemed grateful for our present, and were happy to chat more freely about Toby's future.

Despite us having written a thankyou letter, we wanted to put something in the guest book.  We now need to get a photo printed out to stick in, think of something to write and get Toby to 'help' all before we leave on Friday.  Mmmm we'll see. 

After leaving the PSI we went straight to the Kinderspital for the usual chemo appointment.  Thank goodness Toby's bloods are better than last week (Neutrophils 1.4).  The reduced dose of Vinorelbine may have helped.  So, we continue with the oral cyclophosphamide, and they advise us to drop the Vinorelbine, in line with the protocol.  That saves us an extra half hour, so we made a quick exit, head for a sandwich in the cafe and then hit the road south to the Alps.  An hour or two later we are surrounded by the most spectacular scenery.  We stay the night in a 60's throwback 'motel' which we hurriedly booked last night.  It had felt like Interlaken and the whole Jungfrau region was full when we looked on the internet, but this place had availability.  Easy to see why!!  Spotlessly clean, fantastically friendly staff but wow - like stepping back in time!  A great way to try to start to relax and focus on oursleves as a family.

Monday 14th September

The penultimate day of Toby's treatment!  Hooray. 

Martina had left a note on Friday for the anaesthetist today, to make sure we get the opportunity to finally view the machine.  Only one of us can do it, but while Kyle takes Sam outside, I made sure I took plenty of photos.  (See below!) It felt a bit gruesome really, but having spent so many weeks in a degree of ignorance on the 'how' it all happens, I wanted to make sure we made the most of the opportunity.  Plus, at least we'll have the photos to show Toby when he's older.  I felt sick when I saw some of their photos of Toby, made during the planning sessions.  But I knew now is was the time to be an emotional wreck.  Half of me wishes I'd never seen the images as they'll always be with me, but the other half of me feels better for knowing everything of what has happened to him.  As a teenager or young adult, I would have wanted to know everything, so I think I need to make sure he can understand as much as possible, should he want to.

After the anaesthetic is in, the team bring a trolly through into the room, with Toby's full body mould on.  They transfer him in, and put a 'bite block' in his mouth, which serves as a positioning device.  They then tape his eye right eye open (and tape the other one shut!).  The trolley then moves into the CT scanning room.  They take a CT scan and if he's within 10mm of the original mould position, they can then change the proton beams with the use of computer software, to achieve the original target, and can achieve accuray of 0.25mm.  Amazing stuff.  He then waits while the previous patient is brought out and as soon as the corridor is clear, he's on his way down to the treatment room.  Maximum efficiency of use of the machine is an understatement.  When in the machine, his trolley is attached to the machine, which then retains him in his mould, while the rest of the trolley is moved away.  The floor drops and then the machine rotates around him until it's above him.  He looks like he's suspended in thin air.  I can't believe how futuristic or space age it all seems.

Then it's time for the protons, and we all have to leave the room.  At this point, I'm happy to leave proceedings.  Although it's only a few minutes for the treatment, I was more than happy to say I'd seen enough.  When Toby comes round in the recovery room, there is also a CD of images of him, that they've taken at PSI.  Martina said she'd organise it and organise it she did.  What a star.

We took it easy for the rest of the day.  We've organised a thankyou gift for the PSI, and just had to sort out a gift bag and tissue paper, along with a couple of photos of Toby and a thankyou note.  All ready for our last day of protons tomorrow!  How will we feel when the chemo comes to a finish???!!!

Weekend of 12th/13th September

Toby's temperature manages to stay down overnight and although a tiny bit higher than his normal temp, it's stabilised.  He of couse is fine in himself.

We visited Solothurn (the oldest baroque city in Europe) and Bern, both of which are beautiful.  Lots of fountains for the boys to stick their heads under, a steam tram in Bern, which yielded squeals from both of them.  In the centre of Bern there is a little bike and scooter track set up for children to have a go on a range of pedal free bikes.  They were just the right age for it, and it didn't cost a penny - the owners were obviously just banking on a few sales of their bikes on display.

Friday 11th September

Toby was in the recovery room when Martina, the lovely anaesthetist, tells me he has a slight temperature.  37.5 degrees.  This in itself is not too bad or dangerous, but when we hit the magic number of 38, it usually means a trip to hospital, and often a stay for a few days.  The last time this happened was February when he was on his intensive chemotherapy.  I'll be gutted if we have to go in, with the end being in sight now.

Martina also tells us that she won't be in next week when it's Toby's last treatment sessions so she wants to say goodbye properly today.  She has been the most lovely anaesthetist you could ask for.  She admitted she is very fond of Toby and loves his approach to everything he is facing.  She said that she could tell even though he really doesn't like 'the wire' (used initially for a slow feed of the anaesthetic, but Toby wasn't keen on the feeling of losing control so they now just push it in in a second or so through a syringe!) and the final few seconds of consciousness, he goes along with the routine in such a good natured way, and so bravely.  She thought that was a good trait to have.  Her conversation was sometimes the longest interaction I had with any other adult for the whole day!  Fantastic at english, but happy to speak in german to help me practice we chatted about all sorts over the last month 6 weeks.  I felt quite emotional saying goodbye, and she was keen that we let her know how Toby gets on and grows up.  I think with the treatment centre only doing about 100 patients a year (and only a small percentage are children), and not being in a hospital setting, there is definitely a unique feel about the place, and the chance for closer relationships to be formed. She brought out a lovely polar bear for Toby as a present, and he's been horsing around with it all afternoon!

His temperature goes down a bit through the course of the day, and does drop below 37 again, but it's annoyingly just above 37 for most of the readings.  His body must be fighting something, and with his blood count so low on Tuesday, it's probably not going to just go away quickly.

Back at the flat, I spend a bit of time ironing and clearing up to get organised, in case we need to go into hospital.  Toby does some jigsaws and the predictable setting up of his train track.  Then this afternoon, with his temperature still ok, we make a trip over the border again for some food shopping before Sam and Kyle arrive tonight.  I feel like I'm smuggling illegal stuff into the country when I nip over there.  There are limits on food items (one days worth!) and milk and beer and so on.  The thing is, it's so much better value, (literally half the price on many things) and less than a mile further on than the shops in Switzerland.  Petrol is better value in Switzerland though so naturally I fill up here!

We are in the shop less than half an hour, and in that time I am asked about Toby's burnt face on 2 different occasions.  No inhibitions like at home.  Luckily they don't seem too embarrassed when I then have to launch into full explanation of what's happened to him (no I haven't let him sunburn that particular part of his face!).

Thursday 10th September

Another good day with everything done and back at the flat by 10.30am.  We get both the consultants visit today, while we are in the recovery room.  I debriefed them following the Kinderspital and Augenklink appointments.  There is a mention of not knowing about how much eyebrow hair and eyelash hair he will lose, until 3 months time.So far it's all there I think, but it's so blonde it's hard to tell.  Thick hair is not Toby's strong point anyway, having never even had a proper haircut, prior to it all coming out from the chemo last year.   I also mention that Toby woke up in the night and had a nose bleed - not sure which came first though - the nosebleed which woke him, or waking up and then the nosebleed starting after getting upset!   Outcome was that it's all ok to continue though.  BAck to the flat for a quick play (and coffee for me!) , and then it's a trip to the 'Tierpark' - an animal park which we pass on our journey to the PSI everyday.  It's an intriguing affair when we pass it so I'm hoping it'll make an interesting afternoon, nearby, without having to get in the car. 

I take the bike, knowing it's up the hill, but it's only hills round here right?  We're not in the Alps are we?  Well...it didn't take long but the thighs could feel the hill, especially with Toby on the back!  Think we climbed over 400 feet in about a mile after leaving Bad Zurzach!  The animal park was a sorry affair, with signs up everywhere saying they needed help, if anyone fancied volunteering and selling off various bits of the bird cages.  The small cafe had more success, with a lovely view, but one couldn't help thinking it was a missed opportunity.  Toby enjoyed it though and loved seeing the goats run around, and quite enjoyed playing on the see-saw and slide.  Back down the hill at top speed (don't tell Kyle - he thinks I go to fast, but Toby is still shouting 'faster' from the back seat!) and then a tootle along to the next village, with Toby searching for trains.  Ah, the innocence, ah the earache about when the next train is coming (only 2 an hour means a whole lot of waiting for him!).

Skyped the in-laws to see and speak to Sam (who's staying with them this week).  Seems he has been out on his bike around a lake at some nature park, and hasn't had time to miss us at all.  He's excited though at the prospect of coming out tomorrow to see us, and the idea of the treatment finishing.  We've decided it is now safe to tell him we plan to have a few days holiday at the end, when he can get to do some fun things, and him not be dragged around the PSI and the hospital with too much regularity.  We'll have to make one trip back for chemo, but the other days will belong to us properly at least.

Wednesday 9th September

Good day all round.  Treatment done and dusted, and back to the flat for a play and lunch, and then Toby decided he would comply with the idea of a daytime nap!  He must have been tired as delaying tactics are his speciality at bedtime these days (and to think he used to ask to go to bed at 6.30pm!).  Given all these early starts and my inability to get to bed at a sensible time (all my own fault - the internet is just too interesting!) meant that I thought I'd seize the chance of a kip too!  I felt soooo guilty crawling under the duvet at 12.30 with glorious sunshine outside, but boy did we both feel better for it come 2pm! 

Went out on the bike to stretch the legs and get some fresh air.  Went over the bridge into Germany (weird taking passports with you on a bike ride and crossing country borders daily!  Has anyone seen that film with Tom Hanks when he gets trapped airside?!!) and followed some of the bike trails on the other side of the river, just for a different view.  Stopped off along the way to watch some ducks, look at some sheep on a farm, and admire a woman's 3 week old newborn!  Fell into conversation, at which point I had a weird feeling come over me that this was the sort of 'scenario' you have in school language text books that you ought to be prepared for, along with the grocers, hotel, and going to the doctor.  Hans und Lieselotte if you learnt german in the 80's like me (dog was "Lumpi" but I digress!), or Jean-Paul and Claudette Marsaud in the french version. 

Tuesday 8th September

Busy day today with all things health related. Treatment went ahead as usual, as did the Tuesday research questionnaire discussion.  The treatment should finish in just over a week so thoughts of follow-up are starting to form.  They are keen to get as much info as possible and it sounds like they are somewhat used to the home hospitals not always remembering to send check up information to the PSI, in the following months and years, and also the varying amount and quality of it.  They like to do their own check ups if it's possible.  I can see why too.  It must be a real challenge trying to draw out common themes of side effects when everyone has a different cancer, in a different location, in a different aged child, at a different stage/grouping and on different treatment protocols.

Toby has now had a nose bleed every day for the last week and the doctor at PSI was keen I discuss this at the Kinderspital at the appointment later in the morning (11.30).  I was also informed of an appointment  at the Universitätspital, at the eye clinic at 1 pm.  Great they were on the same day and close together.  Luck or good planning?

Toby's bloods are already low, just a week into this chemo cycle.  His Neutrophils were 1.03 and if 0.9 or less the chemo would be witheld.  The doctor suggested the oral daily cyclophosphamide is continued, but the Vinorelbine was reduced to a 60% dose. They managed to completely distract him from the 'wire' and yet again he's offered a sweet from a tin that appears miraculously at the appropriate time.  The platelets and haemoglobin were good though, so no real concern on the nosebleeds, especially as they are very quick and mild.  He's not losing more than a few drops really each time.  They also checked with ENT about the nosebleeds but really the recommendation is just to continue with the cream, but put up the nose now as well as on his eye area.  Think that'll have to be when he's asleep.  Keeping him still enough for eye drops is a challenge and one that we regularly fall out over! 

On a positive note, he seems very comfortable at the Kinderspital now, knowing his way round, keen to ring the bell when we drop his blood samples off, happy with being examined, loving the playroom and happy to go out to play there while the doctor and I finish any conversations.  Everyone comments on how active he is, and he's starting to get people admiring that beautiful blonde hair that's well on its way back, thank goodness.

The appointment at the eye clinic (Augen Klinik) was much better than the first time!  Toby had a couple of photos taken, and a sweet appears as a well done again.  (Just leaves me worrying about his teeth rotting...after all I haven't got enough to worry about!). They looked at the optic nerve, and the cornea as best they could, given his light sensitivity.  Both appeared normal, which was a bit of a relief.  Obviously it's the long term where things can also develop, but it's still good to know the cornea is smooth now in the throws of the treatment and not damaged due to him scratching it too much or the radiation itself.  They wanted an appointment for the end of Sept or early Oct, but given we'll be back in England, they think it's something Q.C can follow up on.  I think we have an appt in with the othoptic team then anyway actually!

Got home and opened up the new supply of chemo to give today's dose.  The labelling isn't cyclophosphamide so I rang the hospital to tell them.  Given their mistake the first week I didn't want to take any chances!  They assure me that Endoxon is the name of the medicine and that cyclophosphamide is the active ingredient.  Better to check and be on the safe side though.  Mind you, might just go and Google it.  I know, I'm a nightmare!