The days off became intensive care.

Unfortunately our week off at home did not work out.

In the night from Sunday to Monday, Ilai woke up at night, as she did 3 months ago, screaming with all her strength and body and soul. He could not be calmed. The whole thing went three times with two-minute breaks.

The doctors said, as it was then, it was certainly only a Pavor Nocturnus (night terrors). It didn't look like it to me and Keth, but we should keep watching it, especially if it happens during the day. After all, they couldn't find a trigger the last time, despite many examinations.

Monday, Ilai was doing wonderfully. He played and was as cheerful as ever. In the evening he stuffed 1.5 plates of noodles into himself.

In the evening Ilai's feeding tube was suddenly blocked. I went on night duty, hoping that she would be free the next day.

When this was unfortunately not the case in the morning and Ilai had to get his oral chemo, we talked to his doctors who, as expected, said we had to come straight to the hospital.

When we woke up Ilai, he was clearly not well. He threw up even before the first spoon of semolina porridge, didn't want to walk a step and cried constantly.

When we put him on his feet, he stood powerless and wobbly. When he tried to bend down, his legs collapsed.

We went straight to the hospital. But shortly after we were in the room, we were transferred to the intensive care unit because of his high blood pressure.

I will now summarize the next few days. MRI and myelography were done.

The result is that although the last chemo showed some success at first, it could not affect the whole tumor. The more aggressive cells between the eye and brain have continued to grow.

So the chemo protocol is now being changed again and one hopes for success. However, it always takes a few days until you know if it works. The doctors still said that his situation really worries them. The biggest problem right now would be the increasing pressure in his head.

On Thursday, Ilai started his chemo. Since we've been here, the tumor has unfortunately grown a bit, which means that Ilai is now starting to squint again because he is pressing on his eye from behind.

He's been sleeping an awful lot lately. He wakes up screaming about every 3 hours for a maximum of an hour. When awake, he just lies there and watches Tv. Plays for a maximum of 5 minutes. No kisses ☹

He also has to vomit constantly, although this can of course come from the chemo, which is in quite high doses. If you ask him what hurts him, he points to his head and legs. He constantly scratches his head and rubs his eyes. He has already scratched everything.

We now hope that the chemo will have a quick and above all good effect.

I'll keep you posted.