My tumor

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Doneer op NL56 TRIO 0198464134







My clinical diagnosis is a high-grade glioma of the type that presents in the mid-line of the brain. It is located in the brain stem near the nerves which control my face and my eyes. The tumor stems from astrocytes.

During the operation they were able to remove a relatively large piece of the tumor but unfortunately they could not remove everything. The piece of the tumor which was too difficult to remove is growing into the brain stem close to the nerves of my face and my eyes.



I have not been feeling all that  well during  the past two years. I suffered from severe headaches and the doctors told me that I suffered from migraines, but I also felt nauseous and very tired at times. During the last few months I have also had  partial paralysis of my right eye and the right side of my face. It was then that the doctors decided to do an MRI scan which is when they detected the tumor in my brain. From then on everything went really fast.


This picture was taken when I was hospitalized on April

the 29th.



High-grade glioma


In Holland alone  35 kids are diagnosed with a high-grade glioma each year.

A glioma is a tumor which grows in the supporting tissue of the brain. There are different kinds of glioma. Every kind of glioma is named after the supporting cells of the brain where it stems from. Most of the glioma find  their origin in astrocytes and are called astrocytomia. Astrocytes are small cells which look like a star. A high-grade glioma, grade 4, also called glioblastoma, is very hard to control. The chance that it starts growing again after the standard therapy is 98%.

A glioma grows from the supporting cells. These cells have a supporting task, they feed the nerve cells and make sure that waste is cleared out of the body. Probably in one of those cells there has been a mutation of DNA or chromosomes. In the medical world, they still do not know why these mutations occur.




The following complaints that may occur and which I indeed suffer from -

- Headache, nausea

- Difficulty talking of swallowing

- Balance disorder

- Paralyses in the face

- Looking cross-eyed

- Changes in thinking, remembering and behaviour


Prognoses from Erasmus MC

Grade IV glioma cannot be treated curative. The 5-year survival chance is approximately 10%. The median survival period is 15 months.










Stichting Sabii

k.v.k. nr. 66295661



+31 6 28840590 NL 56 TRIO 0198464134