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.
Tuesday 18 August 2009
Monday 17th August
This is the last morning for now, when Toby's treatment starts early in the morning. Prompt as ever, we were back at the flat by 10.30 am. Another afternoon at the outdoor pool loomed as the temperature was so hot (33 degrees Celsius) that anything else felt a bit too strenuous. Toby had fun and it was much quieter than yesterday so he had lots of options without too much risk of being pushed, pulled or splashed too much by other children.
In the evenings, I've been using Skype to call home. Video conferencing has been great to see Sam in the evenings and chat. Just to see his face and talk about the little things in his day. I've now got unlimited international phone calls too for a month, for 10 Euros using Skype. Hooray!
In the evenings, I've been using Skype to call home. Video conferencing has been great to see Sam in the evenings and chat. Just to see his face and talk about the little things in his day. I've now got unlimited international phone calls too for a month, for 10 Euros using Skype. Hooray!
Weekend of 15th/16th August
All back together as a family and Toby was feeling fine so we headed out for the day to a town called Stein am Rhein, north east of where we are staying, on the way to Lake Constance (Bodensee). It was a beautiful town with buildings decorated with frescoes from the 16th century. The boys of course were interested for about 30 seconds, so we headed down to the riverside, where the simplest of things were enjoyed. Particularly funny was a local dog that was intent on jumping in to the river over and over again. Toby and Sam found it mesmerising and hilarious as you'd expect at their age. A miniature railway offered rides for children and parents, so that, combined with watching some boats, an ice cream and paddling in the river up to their waists (no change of clothes but why worry? I can certainly remember occasions like that from back in the 70's!)made for a lovely day out.
Of course both boys then fell asleep in the car on the way home, and then insisted on chattering for hours come bedtime!
Sunday was a trip to the local outdoor pool, given the weather has been so good. We're not sure when it will break so thought we should make the most of it...is that a British approach though, with no two days being the same at home?!! Although Toby isn't allowed to swim due to his central line, I followed him around the toddler paddling pool ready to catch him if he slipped. He seems to know he needs to keep it dry. He still enjoyed splashing about, but was less happy when Sam got to go down the slide and into the bigger pool, and he realised that he couldn't join him. We couldn't win really though - to not go would deny Sam some fun, and yet to go denies Toby some fun. Life's never going to be fair in this situation, so we went anyway. The sadness hit all over again at one point, like a punch in the stomach, that something as simple as a day at a swimming pool is compromised with the treatment of this illness. Roll on the end of the treatment.
Of course both boys then fell asleep in the car on the way home, and then insisted on chattering for hours come bedtime!
Sunday was a trip to the local outdoor pool, given the weather has been so good. We're not sure when it will break so thought we should make the most of it...is that a British approach though, with no two days being the same at home?!! Although Toby isn't allowed to swim due to his central line, I followed him around the toddler paddling pool ready to catch him if he slipped. He seems to know he needs to keep it dry. He still enjoyed splashing about, but was less happy when Sam got to go down the slide and into the bigger pool, and he realised that he couldn't join him. We couldn't win really though - to not go would deny Sam some fun, and yet to go denies Toby some fun. Life's never going to be fair in this situation, so we went anyway. The sadness hit all over again at one point, like a punch in the stomach, that something as simple as a day at a swimming pool is compromised with the treatment of this illness. Roll on the end of the treatment.
Sunday 16 August 2009
Heading out to Switzerland
Sat 1st August
7.30pm - the deadline was set by text last night. To just a few close local friends, please join us for a goodbye drink. We'd have to have the car packed, and drinks would be in the bottle/can, or some leftover plastic cups from the treasure trail, to save on clearing up, but at least we could thank people for their support and have a catch up before leaving.
Normally, to go on holiday, we'd end up packing until midnight, but setting ourselves the slightly ridiculous task of being ready by 7.30pm, it actually meant we got to relax for a few hours, after the craziness of the last month, and before the next phase started.
Sunday 2nd August.
The Archers and Gormleys came to wave us off. 7.45am on a Sunday. That's dedication. Lovely to have such caring friends, and made all the more emotional to say goodbye.
The journey was fine with no delays, and the channel tunnel crossing saved a couple of hours compared to the ferry. The in-car DVD players made an entrance for the boys once we were on the continent and worked a treat. We arrived at Mettlach, just in Germany, at about 6pm. We'd packed a separate bag for the night so the car could stay packed up. A lovely wooded, quiet, safe area, meant a quick walk with the boys down a leafy lane, before some dinner in the dining area. Just a few locals propping up the bar, us (sitting outside much to their amusement - we thought it warm enough, they weren't convinced!) and the local drunk who insisted on scaring the living daylights out of Sam and Tobes by bringing his massive dog just a bit too close. It could almost have felt like a holiday if it weren't for thoughts turning to the reason for being there.
Monday 3rd August.
Breakfast and a shorter journey today - perhaps 4 or 5 hours in total, compared to yesterday's 9 hours. Until 9am anyway. That was when the PSI called to see if we could attnd an appointment later that day, rather than the one planned for the following morning. One of the children being treated was in hospital with an infection and they wanted to use the slot if at all possible. We calculated we could make it so agreed. We had hoped to arrive at the flat early afternoon, get some food in and get unpacked ready for the appointment the next day. Instead we bombed down the motorway, hit some horrible weather and traffic around Strasbourg and watched the estimated arrival time on the sat nav get nearer and nearer the appointment time! We made it in the end, just 10 minutes late.
A wait of a further 30 mins and Toby was taken through for another CT scan. They'd done one at the pre-visit, but the team had then reviewed his case. They decided they could reduce some damage to his eye/cornea if they did a CT scan with his eyes open, and then used the scan to adjust the planning fields, with a view to then doing the treatment with his eyes open rather than closed.
By the time we got away that afternoon and arrived at the flat, the local supermarket was closed. Dinner was at the self-service cafe at the Thermal Baths, about 150 metres from where we were staying!
With only one bedroom, all 4 of us were like sardines in the bedroom that night. More challenging was getting both boys to go to sleep! Chatter, play and mischief prevailed for far too long!
7.30pm - the deadline was set by text last night. To just a few close local friends, please join us for a goodbye drink. We'd have to have the car packed, and drinks would be in the bottle/can, or some leftover plastic cups from the treasure trail, to save on clearing up, but at least we could thank people for their support and have a catch up before leaving.
Normally, to go on holiday, we'd end up packing until midnight, but setting ourselves the slightly ridiculous task of being ready by 7.30pm, it actually meant we got to relax for a few hours, after the craziness of the last month, and before the next phase started.
Sunday 2nd August.
The Archers and Gormleys came to wave us off. 7.45am on a Sunday. That's dedication. Lovely to have such caring friends, and made all the more emotional to say goodbye.
The journey was fine with no delays, and the channel tunnel crossing saved a couple of hours compared to the ferry. The in-car DVD players made an entrance for the boys once we were on the continent and worked a treat. We arrived at Mettlach, just in Germany, at about 6pm. We'd packed a separate bag for the night so the car could stay packed up. A lovely wooded, quiet, safe area, meant a quick walk with the boys down a leafy lane, before some dinner in the dining area. Just a few locals propping up the bar, us (sitting outside much to their amusement - we thought it warm enough, they weren't convinced!) and the local drunk who insisted on scaring the living daylights out of Sam and Tobes by bringing his massive dog just a bit too close. It could almost have felt like a holiday if it weren't for thoughts turning to the reason for being there.
Monday 3rd August.
Breakfast and a shorter journey today - perhaps 4 or 5 hours in total, compared to yesterday's 9 hours. Until 9am anyway. That was when the PSI called to see if we could attnd an appointment later that day, rather than the one planned for the following morning. One of the children being treated was in hospital with an infection and they wanted to use the slot if at all possible. We calculated we could make it so agreed. We had hoped to arrive at the flat early afternoon, get some food in and get unpacked ready for the appointment the next day. Instead we bombed down the motorway, hit some horrible weather and traffic around Strasbourg and watched the estimated arrival time on the sat nav get nearer and nearer the appointment time! We made it in the end, just 10 minutes late.
A wait of a further 30 mins and Toby was taken through for another CT scan. They'd done one at the pre-visit, but the team had then reviewed his case. They decided they could reduce some damage to his eye/cornea if they did a CT scan with his eyes open, and then used the scan to adjust the planning fields, with a view to then doing the treatment with his eyes open rather than closed.
By the time we got away that afternoon and arrived at the flat, the local supermarket was closed. Dinner was at the self-service cafe at the Thermal Baths, about 150 metres from where we were staying!
With only one bedroom, all 4 of us were like sardines in the bedroom that night. More challenging was getting both boys to go to sleep! Chatter, play and mischief prevailed for far too long!
Friday 14th August
Treatment all went very smoothly and according to plan again today. Tobes was put under just after 8 am and I was called back for him at 9am. We were back at the flat by 10.30. The plan was to do some food shopping before Kyle and Sam came out for the weekend, and do a spot of tidying up, so the time we spent with them could be doing more interesting things.
Frau Monica, the manager of the flats here, called at about 11am with the opportunity of us moving flat. She knew we wanted a bigger flat, and although this was the same size (still only a 1-bedroom flat, and the same room layout) we took a look, and it definitely felt a better option. The nature of the furniture and how it was arranged made the flat feel a lot bigger, and the dining table had 4 chairs not 2, so at least when Kyle and Sam came out we could all sit down together for meals. Of course then the reality of moving flat set in! Down 3 flights of stairs and up 5 flights of stairs from one flat to the other. Not just everything we'd packed for 6 weeks, but the food in the cupboards, fridge etc. And with the temperature outside nearly 30 degrees, it made for a good work out!
Tobes was bribed to sit still with a DVD of Roary the Racing Car on the laptop while I nipped out and back between the two flats. Halfway in though, his attention was turned to 'helping' me. Shame anything heavier than a box of cereal was beyond him when it came to the stairs...and actually, even a box of cereal was too large for him to then hold on to the banister! Finally got finished about 4pm! Quick nip across the border to get some groceries (so much cheaper in Germany but got to be careful about customs - limits are v low on things like milk even) and then dinner, bath and bed for Tobes. I'd have to wake him at 9pm to go and collect Sam and Kyle from the airport.
The flight from Birmingham was on time, and it was great to see them both and us all be back together. How you can take the obvious stuff for granted. When I asked Sam if he'd missed us, he replied steadily that he'd been much too busy to miss us. A day out with a friend of mine and her children, 3 days at nursery and a day with another friend all seemed to go down well. I know I should be grateful he seems unfazed by it all so far.
Frau Monica, the manager of the flats here, called at about 11am with the opportunity of us moving flat. She knew we wanted a bigger flat, and although this was the same size (still only a 1-bedroom flat, and the same room layout) we took a look, and it definitely felt a better option. The nature of the furniture and how it was arranged made the flat feel a lot bigger, and the dining table had 4 chairs not 2, so at least when Kyle and Sam came out we could all sit down together for meals. Of course then the reality of moving flat set in! Down 3 flights of stairs and up 5 flights of stairs from one flat to the other. Not just everything we'd packed for 6 weeks, but the food in the cupboards, fridge etc. And with the temperature outside nearly 30 degrees, it made for a good work out!
Tobes was bribed to sit still with a DVD of Roary the Racing Car on the laptop while I nipped out and back between the two flats. Halfway in though, his attention was turned to 'helping' me. Shame anything heavier than a box of cereal was beyond him when it came to the stairs...and actually, even a box of cereal was too large for him to then hold on to the banister! Finally got finished about 4pm! Quick nip across the border to get some groceries (so much cheaper in Germany but got to be careful about customs - limits are v low on things like milk even) and then dinner, bath and bed for Tobes. I'd have to wake him at 9pm to go and collect Sam and Kyle from the airport.
The flight from Birmingham was on time, and it was great to see them both and us all be back together. How you can take the obvious stuff for granted. When I asked Sam if he'd missed us, he replied steadily that he'd been much too busy to miss us. A day out with a friend of mine and her children, 3 days at nursery and a day with another friend all seemed to go down well. I know I should be grateful he seems unfazed by it all so far.
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