Shymo’s last blogpost
A last blog from Shymo written by mom together with the family. 07-03-2021 March is on its way. For coming week the agenda is filled with visits. On Sunday the grandpa and grandma from Siem will come. We are making the place cozy: extra cozy with pillows in the tent, cake… it’s like the king […]
Shymo’s blog: tiredness and setbacks
In previous blogs I mentioned that my hands and arms are not working well. That is why I do want to mention that I do this blog together with my family. Teamwork! 08-01-2021 The first days of the new year go quite well, but soon after it goes downhill. One and a half weeks ago […]
Shymo’s blog: my holiday month
Dear readers, Recently it has become harder for me to write blogs. This is because I cannot use my arms and hands and it costs me a lot of energy. Sometimes I am a bit confused and haven’t got everything sorted in my mind. But besides that I do want to tell you that you […]
Letter to my tumor
Dear H3K27M, You have already been with me for a fifth part of my life; it’s been enough. I have been sick for four years and that means that I have already broken your record. You can’t win anymore. Don’t you understand that when I’m gone, you’re gone as well? I want to extend my […]
Shymo’s blog: everyday it’s Tuesday!
19-10-2020 We had such an amazing week. I have seen a couple of friend and since the weather was wonderful we sat outside. There were also some amazing meals (mom’s food is always good) and we watched some movies with the family. But today it didn’t go too well, as I woke up with a […]
Shymo’s blog: It’s five for twelve
As some of you probably already know I stopped with the most recent treatment and I have also finished radiotherapy by now. My biggest hope of course is that my arms will recover. At the moment I can do barely anything… Therefore I have written this blog together with Siem and my mother. 17-09-2020 Today […]
Shymo’s blog: tiresome summer
01-09-20 During the ‘prednisoneweek’ I ate a lot and everything tasted great. But this story does have a downside. I immediately notice that that my body starts to itch like crazy (from the inside), as I’m holding more moisture. But as soon as I stop taking the prednisone the pain comes back. At home we […]
Shymo’s blog: eight long weeks with a terrible ending
15-07-2020 We’re in week five of the new treatment, which as planned starts every week with a blood test, measuring my weight and length. I’ve lost another 1,3kg, which is good. But unfortunately the blood test shows that my red and white blood cell values are very low. This week I’m allowed to get the […]
Shymo’s Blog: Fifteen kg extra and the new medicine
12-06-20 It was a long day full of planned, but also unplanned appointments. First thing on our list was the PICC-line. Which is necessary for the new treatment. The whole procedure took about an hour. At home I was worrying myself since the stretchmarks on my arm were very fresh and present. But fortunately it […]
Shymo’s blog: 20 years!
24-05-20 My birthday! And of course the birthday of my dear sister Zyara! That I’ve been born on Zyara’s birthday continues to amaze people haha, which I totally get! But I always enjoyed it and we always make sure to have a good time! I turned 20. That means that for already three and a […]