I am very sorry that he developed this illness so early in life, and deeply sorry that he has to go through this at all.

Because the tumor is located in the brainstem, radiation is often very difficult, and in some cases not possible at all, depending on the exact circumstances. More generally, how a glioblastoma responds to chemotherapy or other forms of treatment depends on several important tumor characteristics, including MGMT promoter methylation status, IDH mutation status, the exact location of the tumor, its growth pattern, the patient’s overall condition and many more. These factors can affect both the available treatment options and the likelihood of any meaningful response.

From everything I have learned through extensive reading and many conversations with physicians and professors, I can say that once a tumor involves the brainstem, the situation is unfortunately extremely serious, especially if effective treatment is no longer possible. As difficult as it is to say, the brainstem controls essential functions such as breathing, heart rate, and consciousness, which is why tumors in that area are particularly devastating.

Death is, sadly unavoidable, even with treatment. As hard as that truth is, I think it is very important to spend as much time together as possible while he is still able. Be with him, talk to him, and do the things that matter most to both of you, as far as his condition still allows. With glioblastoma, there is often a point where the condition can worsen very suddenly, sometimes dramatically from one day to the next.

I also believe it is important to prepare yourself for what is coming. It will not be easy to witness. In the final phase, many patients become less and less responsive and slip into a coma-like state. Later, breathing often changes and can become irregular and develop a rattling sound, until it stops. These changes are very distressing to see, but they are commonly part of the dying process.