Busy times

Kiara's new endeavor with the musical is very time consuming. Luckily Aldith is helping me out with the driving to Amsterdam a lot of the time. It's really hard work for Kiara but she seems to really be thriving on it all. This weekend we did a few fun things together. Saturday was gone as she rehearsed from 10 to 16 hours.
We went to an event that Marcus was involved with where Graffitti artists strutted their stuff. Kiara, Collin and Sydney played a bit.




















































An awful band was playing and it was rather cold, so seeing as Kiara had had to miss Ineke's birthday party, we left after one or two hours to pay a quick visit to Ineke. It was a little bit late for Kiara when we left, because we had a few things planned for the Sunday, like a fotoshoot in Hilversum for Kiara combined with the open day at the Media Park. We did a few fun things there then headed for Laren for the famous Poffertjes (mini pancakes). When I got there I reallized that Kiara and I hadn't managed to visit this season yet, which is something we do a few times every summer. They are closing down in two weeks time and it is getting rather chilly. There goes our summer.

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Almost normal

I had a wonderfully relaxing weekend. Marcus and I recorded a song on Friday and went to the Sauna on Saturday. Sunday I had a long lie in. Kiara was at her dad's and I picked her up in the evening. I had a surprise for her. We drove to a nearby Metro, but couldn't get on there because Amsterdam has started to use the OV CHIP a type of credit card for travel on public transport. Couldn't figure out how to travel without one so we drove to Duivendrecht instead, which is a larger station. Luckily there were a bunch of students there explaining how the system works. I had way to many questions, but they remained calm, friendly and knew their stuff. We made our way over to the Nieuwmarkt in Amsterdam. Kiara still didn't know where we were as the underground Metro had messed up her sense of direction. She had been craving a meal at Nam Kee, the Chinese specialist in the heart of Amsterdam. It was really good, which it always is. We travelled back to the car by metro. Kiara had a go at climbing the steep wall. She actually found a way to do so.

41

On August 20 I turned 41. I hadn't planned to do much but I decided to meet my friends at a tea room in town just like last year. It is so much easier for me to do that compared to inviting people to my home. It was a great afternoon. Kiara had been up to mysterious activities the last couple of days, phoning people and wanting to go into town. The mystery was revealed when she gave me a beautiful silver necklace and charm, so carefully selected that it I can combine it with all my clothes.

Don't little girls grow up much too fast? It was a hot hot day and we were expecting a storm. Luckily it didn't start raining until we all were home.

I was spoilt rotten with beautiful gifts, and the day seemed extra special when I read my blog from 2007 when I was so happy to have made it to 39.

At the rate I'm going...I might just have to worry about my pension after all.

Sorafenib

This summer most of my stress originated from the thought that I am entering a new fase. I have been granted a chance to be treated with Sorafenib, or Nexafar. This sounds wonderful but it actually implies that we have embarked on the last resorts. I usually try to concentrate on everything that is going well. I have in some sense reached a status that can be called reasonably stable as the Thyroglobuline count is still very slowly decreasing. The decrease is so slow though that my doctor prefers to call my situation stable. That is if we are doing the maths. Looking at the past 8 months though I can only conclude that there has been more deterioration than build-up. I have a hunch that all my problems in the past 2,5 years were there to start with. I don't think that the cancer has spread to new areas. The original areas did have a chance to progress though. The Sorafenib is a drug that is used in metastased (spread) cancer. It has been applied to liver and adrenal cancer in the past.
The first tests on thyroid cancer were done in Pennsylvania. Here are the results:
Researchers from the University of Pennsylvania assigned patients (n=30) to 400 mg of oral sorafenib (Nexavar, Bayer Healthcare) twice daily for a minimum of 16 weeks.
According to the researchers, sorafenib had an overall clinical benefit rate of 77% and an overall acceptable safety profile. Twenty-three percent (95% CI, 0.10-0.42) of patients had a partial response lasting 18 to 84 weeks, and 53% (95% CI, 0.34-0.72) had stable disease lasting 14 to 89 weeks, according to the researchers.
Ninety-five percent of patients with available serial thyroglobulin levels showed a rapid response in thyroglobulin levels with a mean decrease of 70%, according to the researchers.

Last year the first Dutch trials were held. The results are pretty good with a small reservation made for the bone metastases. What a bummer, I have only bone metastases. Seeing as most of the people that took part in the tests were over 65, I am just going to convince myself that I, as usual, will be the odd one out where it will work. I am getting a call this afternoon with regards to my first meeting with Dr. Boven, an oncologist. So happy I don't have to go back to Gerritsen. Dr. Smit in Leiden will be monitoring my progress. Fear is a problem. Not so much for the horrible side effects, but the "what if" factor is rather disturbing.

Amandla! Mandela

During the Millenium change, when
Kiara was only 6 months old, we went to Cape Town to celebrate. One of the things tourist must not miss is the trip to Robben Island where Nelson Mandela was held captive for 27 years. Fellow prisoners, now released, tell the history of this prison and its significance to South Africa and the World.

Two years ago when Jacqueline was playing in the Dutch version of the Lion King musical, Kiara, my mother and I went to see it in Scheveningen. Jacqueline arranged a tour backstage after the performance was finished. It lit a fire inside Kiara whom from that moment onward dreamed of becoming a musical star. It wasn't really our expectation that she would end up doing anything in this field as she was a great actor, but not such a good singer. Kiara's fascination brought us to a great deal of performances at top level. Each time she persuaded me to buy her the CD which she practiced on end in her bedroom.

Around Christmas last year Kiara started asking me how she could partake in a musical. I told her she would need to audition and that that was pretty hard seeing the competition. I started her in musical classes just so she could experience what it is all about, and I allowed her to try out for a famous Dutch musical called "Ciske de Rat". I had told her that auditioning is something you need a lot of practice at before actually managing to get selected. Kiara was singled out of the group and told that despite the fact that they did not have a role for her, she had auditioned really well and that she should try out for Amandla! Mandela, a new musical about Nelson Mandela. Kiara went to the auditions and we were told that she was in the first selection. Within 2 weeks they would know if she could participate. The 2 weeks came and went and I decided to call. Kiara was actually on hold as they were deliberating whether they were going to create an extra personnage. Kiara left for her holidays with her father and it was already July when I heard she had been selected for real! Last monday Kiara had her introduction day. The pictures will tell you the story. I am so very proud of her ambition, persistance, and hard work. She did this all despite everything that has been going on! I doubt that our trip had anything to do with all of this. But it's nice to think we might just have planted the seed. I feel blessed to witness these moments.

Back home

Well I think you gathered that these holidays were perhaps a little too much excitement for me. I have spent the next week or so trying to get in shape again for the new school year. Kiara is starting school on the 17th of august and I was due back at the Trappenberg on the13th. Kiara and I spent a lot of time around the house, in Hilversum and she was able to visit her school friends again. By monday the 1Oth Kiara was about to embark on a new adventure......

Wognum part IV

Kiara turned 10 years old while she was in France with her father, so we had some catching up to do. We invited friends and family over to Wognum to celebrate. Kiara had already received her presents from Jocelyn, and myself and had practiced walking on her powerstilts all week.

But having everyone come over was something she really looked forward to. By 14.00 hours almost everybody had arrived.

The kids played soccer on the lawn and the old foggies sipped wine on the terrace. It was a beautifully sunny day. At the end of the afternoon the Loos family joined us in our celebration and Siem had fired up the oven to make pizzas. It proved to be a real family effort as Ben had been in in the morning to make the dough.

Special thanks to Mom and Tirza for helping me out with all the groceries, the salads, not to mention the cake.

It was also really nice for Kiara to meet her cousin Yaris from Switzerland.

Ada and Siem, I truely recommend the Pizza school! Anyone interested in a fun day for all, get in touch with Wijngaard Saalhof.