Here at home it has become much quieter since Titien can no longer speak properly. Of course, it was she who initiated and kept the communication going in our relationship. I miss that.

In the last months her voice became more and more nasal, which annoyed her. But she was still easy to understand. In the last few weeks, speaking became mumbling and I had to ask more and more often what she had just said. This was frustrating and caused her to speak less and less.

Her pronunciation continued to decline, her handwriting was also indecipherable, so that we retreated to communicate with the mobile phone. She wrote and I answered her verbally.

Then typing became more and more difficult for her and she had trouble holding her phone. In the meantime I could not understand even repeatedly spoken, single words.

We developed a questioning technique: Do you want something to drink? Something to eat? Something with medication? Should I change your position? Then follow up questions: Water or juice or tea? Change position of head or arms or legs?

A few days ago she could answer with sounds that resembled yes or no. Now the fingers of her right hand and her eyelids are the only parts of her body that she can still actively move.

One finger or one blink means yes. Two fingers or two blinks means no. One, two, or three fingers correspond to options that I enumerate for her.

If she wants to tell me something that doesn’t fit the pattern of drinking, eating, meds, and position changes, I start with the ABC and she taps her finger on my hand when we get to the right letter.

abcde I feel her tapping
Back again: B C, she taps. First letter C
abcdefghijk i feel her tapping
Back again:F G H, she taps. Second letter H
At the end, there is CHECK FACEBOOK written on my pad and I know that I should read her the comments on her last Facebook post, which she had pre-written three weeks ago when she was still able to use the mobile phone, and which I published the day before yesterday in her name.

Last night she wanted to tell me something:


  1. Oh Tobias, thank you for your update. This message from Titien is a stab in the heart. 😢💔

    Sweet Titien, God bless you and keep you. I have enjoyed reading all of your blog posts o we the last year – they are insightful, thoughtful and full of wisdom and humor. I am so heartbroken that this cruel, disgusting cancer has caused so much suffering for you both. You are both such strong, special people. The Lord has worked wonders through you Titien, his good and faithful servant. I am praying for you both. Love from Los Angeles 🙏♥️🕊️

    1. I am a nurse from Southern Illinois in the US. While I was on break today – I saw a post on Facebook and then read Titien’s blog. My neighbor lost her 7 year old granddaughter to DIPG. Please know that we are sending much Love & many Prayers. ♥️🙏🏼✝️♥️

  2. Darling Titien. I mostly post to you on Facebook, but I read your blog daily. It’s very special to me. You are very special to me.

    Sending peace and love to you both. If I could carry any of your hurt I would.

    Know that you are loved all over the world brave, beautiful Titen.

    Thank you for allowing us to be present with you.

    Aroha nui.

  3. Dear Titien an Tobi, you both Are so wonderful and so much loved. Bonhoeffer wrote those words, he knew that God was with him: By gracious powers so wonderfully sheltered,
    and confidently waiting come what may,
    we know that God is with us night and morning,
    and never fails to greet us each new day.

    When silence now will snow around us ev’rywhere,
    so let us hear the all-embracing sound
    of greater things than we can see and wider,
    your world, and all your children’s soaring hail.

    By loving forces wonderfully sheltered,
    we are awaiting fearlessly what comes.
    God is with us at dusk and in the morning
    and most assuredly on ev’ry day.
    Big hug, Julia

  4. Dear Titien and Tobias,
    I don’t know why you have to go through all this.
    For it seems to me that God has put the Maiers on display as a spectacle to the whole universe, to angels as well as to human beings.
    I cling to the promise of rewards beyond belief.
    Therefore, we could be steadfast in hoping and slow in grieving.
    You have my admiration and prayers.

  5. My heart is hurting as I’m reading this on a bus half way around the world with tears in my eyes. Titien we love you. Tobias we love you. May we all meet one day in Heaven where there is no sadness or sickness or pain. Xxx God bless you

  6. Dear Tobi and Titien, it hurts to read this and I wish there was something, I could do to help. Sending you two lots of love.

  7. Dear Tobias and Titien,

    In his final weeks of DIPG my son used a eye motion control device (I-16) from Tobii Dynavox to spell out his wishes through with eye ball movement.

    I could lend you the device if needed. Please call me at (+49)17644278875 if you think this is a good idea.

    My wife and I are praying for Titien and you.

    Thomas & Judy

  8. Dear Titien,
    I came across your instagram and blog a few months ago when I was trying to learn more about DIPG. I was immediately drawn to your honesty, courage, and the deep love between you and Tobias. You are such an authentic writer with immense bravery!

    I cannot begin to imagine how difficult it must be to communicate your latest message to Tobias. My heart breaks for both of you. I hope you know how much of an impact you have cast on me, a stranger from Singapore. I am sure there are many more readers out there who absolutely love and admire you both like I do.

    Dear Tobias,
    Thank you so much for updating us. I cannot imagine how you are shouldering it all. Your unwavering love and commitment touches all of us. Please, please let us know if there is anything that we may be of help. Please also remember to take care of yourself! Sending lots of love to both of you.

  9. Tears……thank you Maier’s for your raw emotions and graceful writing. Thank you for caring enough to share your journey. Your every post moves me. Amidst the pain and challenges with cancer progression, you write with hope, good humor and inspiration to live life intentionally. God bless you richly as you bless so many of us!

  10. Dear Titien & Tobias,
    first time I write but I’ve read your posts for two (?) years…. sometimes with tears.

    It‘s difficult to find the right words. I can just imagine a tiny bit of how you both feel.

    Nevertheless, my thoughts and prayers are with you. Thank you both for your thoughts, prayers and insights.

    Dear Titien,

    „Mögen Engel dich begleiten auf dem Weg, der vor dir liegt. Mögen sie dir immer zeigen, dass dich Gott unendlich liebt.“

    May Angels guide you and follow your path. May they show you that God loves you unconditionally and for eternity. (Just a rough translation the German version is nicer)

  11. Titian & Tobias, thank you for bravely sharing your journey with the world. I have followed your writing, and your honesty in sharing your experience has helped me stay positive and provided comfort during a very difficult time in my family. Your words will live on in our hearts. Sending lots of love and prayers!

  12. Keeping you both in my thoughts. Thank you for sharing this with us. Titien I want you to know that reading you has been a privilege. Sending you love… ❤️

  13. Love and prayers, Titien and Tobias. Your bravery and love is astounding. Titien – I’ve been reading through your blog and so inspired and grateful for the honour of reading the different posts on many topics that are at once wise, playful, kindhearted, candid and profound. Thank you for showing God’s presence in joy and grief, and demonstrating His love through your words and who you are. Deepest respect and admiration.

  14. Hi Titien, a lot of love for you.
    Hope you can live your remaining days in peace even though the path is difficult.
    I have a lot to learn for being so strong mentally to face and share your journey with the whole world.
    God bless you always.

  15. Titian you inspire me so much, thank you for writing this blog and educating us on DIPG. It’s always so great to see a new post from you, keeping you both in my thoughts and prayers ❤️

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