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 […]
Quarantine experiences from Shymo’s environment
Shymo has been in quarantine since March. By reading her blogs you have been able to experience a bit of how she experiences this and it has not been easy. Family and friends who can’t come over to give her a hug and who at the beginning of the quarantine only could talk to Shymo […]
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 […]
Shymo’s Blog: My month May
04-05-20 Today we had quite some appointments at the UMC. For an intake, CT-scan, to make a radiation mask and for a meeting with the radiotherapist. It went swiftly and smooth. The waiting time was minimal, very nice! We were even done an hour earlier than scheduled. That has not always been the case haha […]
Shymo’s Blog: Unpredictable Time
20-03-20 Today we have been to the PMC It was unexpectedly quiet but we were received with open arms. I gave quite an amount of blood for a scientific research. The objective is to investigate which substances active the infections within my body, for example the one that I had in my esophagus last December. […]