Tobias – Titien

9. August 202016. August 2020

HOW TO LIVE IN THE HERE AND NOW? (by Tobias)

Titien and I have a mantra that we’ve been following at least since her being dignosed with DIPG: live in the here and now. What sounds like a hackneyed phrase from the self help literature is actually meaningful to us. We have realized how valuable the time we have left is.

2. August 202016. August 2020

UNFORTUNATELY TITIEN’S STATE OF HEALTH CONTINUES TO DETERIORATE (by Tobias)

She sleeps a lot or dozes off. The tumor in her brain stem paralyzes all her muscles. She can no longer hold her head and if I or an armrest does not support her, she tips over on the sofa or out of the wheelchair.