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.

Her legs can no longer hold her body. Every time I lift her from the bed to the toilet chair, into the shower, onto the sofa, into the wheelchair and back, her full weight is on me. I always make sure to lift her from my knees,
luckily my lumbago is gone.

Her left arm is more or less functionless and dangles at her side. She can still hold her mobile phone in it and type with her right hand. She continues to write blogposts and instructions and wishes for me.

The mobile phone is still a communication channel that we have. She can’t really talk anymore. I can guess from her sounds what she wants (water, tea, to the toilet, the pillow differently, …) Much can be deduced from the context and much follows established routines.

Titien must be fed in the meantime. I bought her several bibs so that the part of the solid and liquid food that is not swallowed is collected before it lands on clothes and floor.

She can only eat soft food. Porridge works, ripe fruits in very small pieces work. Passed soups work. Bread without crust with thick cream cheese on it works. Spicy food is no longer possible. She chews very slowly.

She chokes while eating and drinking and can only with difficulty cough her windpipe free again. I feel helpless when I hold her bent over and pat her on the back.

Titien’s breathing goes rattling. The day before yesterday a doctor was here because we suspected that Titien had water in her lungs. Fortunately the all-clear was given. But pneumonia caused by aspirated food or drink is a real danger that we have to deal with.

Titien has a feeding tube through the abdominal wall. She has stated both in her living will and several times orally that she wants her feeding tube to be used for water but not food.

36 Replies to “UNFORTUNATELY TITIEN’S STATE OF HEALTH CONTINUES TO DETERIORATE (by Tobias)”

  1. Dear Tobias, thank you for keeping us updated. Words cannot describe the depth of love between you and Titien. Sending hugs.

  2. Dear Tobias, thank you for making time to update us. Kayan updated us too via wechat. My heart is heavy. I’m praying for you and Titien.

  3. Dear Titien and Tobias, it makes me sad to hear what you two have to go through right now and I wish you did not have to go through this. The love you share, however makes me very happy. We are thinking of you. Betti and family

  4. Tobias,

    Thank you for the update. You and Titien share something very special, and your devotion to her in sickness and health is what all couples should aspire to. To say this is unfair and heartbreaking, is an understatement. Love and prayers of comfort to both of you, from Los Angeles.

  5. Dear Tobias, you are a gift to Titien. I pray for her and you, knowing that she will soon leave you. Please give her our love and greetings. Sherry and John Yoder

  6. Titien and Tobias you two are truly what love is about❤️🙏 I am so glad Titien we were able to chat in our newly diagnosis. I am truly heartbroken for you both! ❤️❤️❤️❤️

  7. Dear Tobias and Titien,
    Thank you so much for the continued updates. My church and my family are sending prayers and lots of love your way. I wish I could hug you both again. Lifting you up to the Maker of the Stars.
    Love Always,
    Nora Ruggeri

  8. Thank you so much for sharing Tobias. Your love for Titien is so beautiful and I understand why it means so much to her. Sending you both strength and love. You are both amazing! ❤️❤️

  9. Dear Titien & Tobias,

    Thank you for the updates Tobias. My heart is so heavy and sad reading this. Words can’t fully describe the love you both have for each other. I can’t imagine what you both are going through day by day. We love u Titien, the moments we shared together while we were in Beijing is a precious memory. Thank you for being an “always be there” kind of friend. I’m grateful to know you in personal. We will keep you and Tobias, also your family in our prayer.

    Lots of love and prayer,

    Jepz

  10. God bless you richly Tobias and thank God for your life and love you are minute by minute showing to her. I am deeply moved by your love and service to her and I can only imagine how much you also carry this loving service to care and help her daily.Thank You God also for the life,testimony,faith,perseverance and the love that Titien’s is sharing to all of us .We ask sustain her,touch and Your loving and powerful gentle hands bless , protect and heal her in Jesus Gracious Name.Bless also Tobias and let your strength,encouragement of love and provisions fills him always.Amen. – Numbers6:24-26 & Philippians1:6

  11. Dear Titien and Tobias,
    Thank you so much for sharing with us your difficult struggle day by day, for a father of a DIPG angel who passed away 9 month after diagnosed, I can only be jealous with you two for the long time you spend together, for the reconciliation with the situation and the great belive Titien has of God and his compassion.
    I follow your blog for several months and I’m always happy to read your positive attitude for life and the thankfulness and gratitude – it is so important for you and for your loved ones.
    Waiting for the next post.
    Nir Barak, father of Libi my heart
    New York / Tel-Aviv

    1. Hi Nir Barak,
      I’m so sorry for your loss of your father to DIPG.
      It must be difficult.
      I somehow understood.
      Thanks for sharing this.
      I can’t say anything but to send you my love and hugs ♥️.
      Thank you for reading my stories ♥️.

    2. Shalom Nir,
      I am sorry to hear of your loss. It is heartbreaking to know that DIPG takes children so much faster. We are truly grateful for the time we have together.
      Hugs,
      Tobias

  12. Sending the both of you so much love and strength, and wishing I could hold you both up in the light with grace. My husband had DIPG and my heart goes out to you both.

  13. Hi Titien and Tobias. I always look forward to your updates. And thank you for sharing this. I am sure it is not easy. Your blog posts give me valuable insights about my mom’s process with her high grade glioma, astrocytoma type. BIG and maaannnyyyy warm hugs.

  14. Hi Tobias and Titien, must be a real challenge, sometimes i really cant bring comprehend what you guys are having to go through, i pray Jesus fills you guys with peace and strength during this trying times. Love you guys loads.

    Bryan and Yang

  15. Dearest Titien & Tobias, I’ve been reading your blog, I cannot remember how I came across it…. But I am really very touch to see how true love is and how much Tobias has given to Titien and how thankful Titien is everyday. All these are from the Love within us. I will continue to pray for the both of you and May the Lord continue to shower love and warmth for the both of you, may the Lord continuously gives you strength and wisdom…. May He send His Angels to protect the both of you and always truly asking for a miracle whatever it may be….. You guys are such a great example of true love. I’m sure this journey is not easy for the both of you. I will always always pray for the both of you…. big big big big hugs and warmth and love from Malaysia.

  16. Dear Titien and Tobias,
    I’m fairly new to Titien’s journey but what I know is that she’s very brave and strong woman. She’s fortunate to have a loving husband like you to provide aid. The love that you both have is empowering and pure. My prayers go out for you guys.

  17. Tobias and Titien,
    My prayers are with you both. My heart hurts for all you’re enduring. I know how it feels to be a caretaker to the other part of your heart. Your love story has touched people around the world. Thank you for sharing with such honesty. Your strength is inspiring.

    Peace & love
    Anne

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