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.
Thursday 17 September 2009
Monday 14 September 2009
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???!!!
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.
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.
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.
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