Shymo’s first blogpost

Shymo

Hi everyone,

From now on I will make use of the opportunity to start blogging on the website. The last period was not easy, you could say that I have been through a lot, more negative than positive. I recorded these moments. I will try to write as many blogs as possible about the things that happened to me the last couple of weeks, but also about my daily life. Also I want to tell you all about the setbacks that I got because of my illness and all the emotions that come along with it.

15-07-19

Unfortunately I have some bad news. Since Thursday I have been in the Princes Maxima Center in Utrecht. I had a fever and a lot of pain in my stomach and back. De doctors gave me strong pain medication and ran a lot of tests. They keep me connected to the heart monitor. I came there with the thought that I could go home the same day, but this was not the case. As of today, when I finally started to feel better, the results of the MRI came in. All tumors have grown. In the US is the solution, but it is still not sure if I can go there. It is necessary that I get that solution. So a foundation has been founded, of which the last details need to be sorted, after that we can start raising money. To either become able to go to the US, or purchase the treatment and bring it to the Netherlands. Tomorrow there will be a meeting about plan B (to start another radiation treatment) because the growth needs to slow down, otherwise my condition will get worse very quickly. No I need to rehabilitate from all the esketamine they gave me in the hospital, so hopefully I’ll be back to normal pretty soon.

19-07-19
Hey all,

To give you some more clarity. My right hand is not responding that well anymore because my paralysis is getting worse. I’m trying to answer as many messages as possible, but that takes a lot of energy. I just got home since yesterday from the hospital, but I still feel quite bad. Fortunately I’m home, it was like hell in the hospital, even though the people there were really nice and the food was delicious. Five nights of crying because at one point the certainty, hope and courage were all taken from me. I went to the hospital just for pain, but left with an even worse paraplegia.

They convinced me heavily to get radiation treatment for ten days, so as of today I started with that. The doctors want to give me the radiation treatment in such a way that it would be possible to get another radiation treatment in the future if needed, and they believe that this will work. For now I have to recover a lot but in the meantime I have to go to Utrecht every day…

The last few nights I slept very well in my own bed, fortunately. The amount of support that I get with donation feels bizarre. But I appreciate it enormously. As well as all the love that I get from my family, friends, Siem and all of you of course. This week feels unprecedented. But for the rest I still feel like a dishcloth, so hopefully I will feel better soon. If you have questions for me, don’t be afraid to ask them, but do know that most information is available on the website and social media.

Lots of love, Shymo

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