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

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

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

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

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

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

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

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

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

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

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,

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