5 MINUTES OF YOUR TIME FOR PRAYER

Friends, apparently my last post is not my last one after all 😊. I’m still here, and I promise I will write until I can’t write/ type anymore 😁.

As per today, the COVID-19 pandemic has already affected 213 countries, more than 5.9 million people, and taken more than 360.000 lives.

Here I want to sincerely thank all front-liners.
From health care staff, pharmacists, police officers, firefighters, paramedics, grocery shop staff, delivery guys, cleaners, garbage collectors, to many more essential workers that risk their health everyday for us. Thank you.

::: YOUR PRAYER MATTERS

In my journey with DIPG,
I was not always strong.
Sometimes I just didn’t know what to do.
Sometimes I was in despair, too.

Although I know God and Tobias were here with me.
But, do you know what really touched me?
To read your encouragement comments.
Knowing that you’re praying for me.
Knowing that you’re knocking on Heaven’s door for me.
I knew I have experienced so many good things brought by so many prayers from you.

Friends,
your prayers make a difference in my life.
From the bottom of my heart,
I thank you for remembering and lifting me up in your prayers.

::: LET’S PRAY FOR THEM

Friends,
we could pray for ourselves and 1-2 other people we care for.
But, today I would like to ask you a favor,
to pray for a bit more for those who need prayers.

Heavenly Father,
Please protect health care professionals from COVID-19 they’re treating,
make them an instrument of your healing.
Give them strength, comfort, courage and the patience they need.

Please hear the cry of COVID-19 patients.
Bring them rest, comfort and healing.
So, they can be united with their family again.

Please protect all the front-liners (delivery men, grocery store staff, hospital staff, pharmacists, essential staff and so on). They risk their health everyday for us. Add more patience, protection, kindness to their life.

Please comfort families and friends who are grieving from losing their loved ones to the pandemic.

Please give rest, strength, peace and comfort beyond human understanding to all DIPG patients and families. It’s difficult for us Father. We need Your help.

So many tragedies and calamities were happening lately. Please send much love and comfort to the families affected.

Please heal the land eaten by locusts. Please provide food to the hungry. May international organizations reach them and maybe we could help them.

Please provide those who lost their income/jobs. Those who have a financial burden and struggle to survive. Help them to get through this and open new ways.

Please help those vulnerable people. Those who don’t have health insurance. We ask you that they don’t have to face their medical exceeding their financial means by themselves.

Please sustain and help those who are going through separation/divorce during this time.

Please add more wisdom and guidance for public officials and decision-makers how to deal with this pandemic.

Help us to find ways to share love and solidarity during this pandemic.

We may forget those who need our prayers.
You know them, put them in our mind.
Hear and answer their pleas, Father.

Help us to enjoy the day You’ve given us.
Help us to use Your grace and blessings,
and live our life to the fullest.
Thank You for Your protection and goodness.
Thank You for the sufficient grace and generosity in our life.
We trust You.
You’re faithful, kind and we know you love us.
In Jesus name we pray, amen.

Thanks everyone for praying ❤️
Love,
Titien

“do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”
‭‭Philippians‬ ‭4:6‬ ‭ESV‬‬

“Rejoice in hope, be patient in tribulation, be constant in prayer.”
‭‭Romans‬ ‭12:12‬ ‭ESV‬


::: UPDATE ABOUT ME
3 Years Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV

On Thursday, May 27th I received the last 33rd round of Avastin. Then, I’ll stop with this treatment, it no longer works.

Last week, the doctor called that from the FET-PET scan they saw a progression in the brainstem. They can’t give irradiation and no more drugs for me. So, no further treatments are available.

Now, I have palliative care. I have anxiety drugs in case I come to difficulty with breathing. Palliative care nurse will come and assist us with what we need at home.

Currently I’m not able to see my doctor. She’s busy with COVID-19. So, we communicate through email. We should have an appointment next week, though.

I am getting worse rapidly, day by day.
For now, I increased dexamethasone to 16 mg daily. 10 mg after breakfast, 6 mg after lunch. It doesn’t slow down my symptoms from worsening. There are no new symptoms, but all my symptoms get more intense. It pretty much limits everything I want to do. Every movement feels heavy. I have difficulty speaking, my voice sounds nasal, I have difficulty walking even with a rollator at home, I have difficulty moving out from bed, I have difficulty moving my body, I have severe head pressure, double vision, balance issues, bowel issues to the point where I can’t control my bowel anymore, tingling pain on my left arm and on my face, weakness of my right arm, and many fits of laughter. I need to be in a wheelchair when leaving my flat. It’s difficult for me now, I no longer can deal with bumpiness and uneven roads, only a very smooth pavement.

Please go to “My Medical History” for more details.

Thanks for keeping me in your prayers 🙏

PS: Thank you for reading, commenting and sharing my posts.
Please subscribe to get updates by mail. 🤗

Schlossgarten close to home 🌳
🏰
Feeding the ducks 🦆 🥖
Or geese 😁
We’re allowed to go to the park
No mask 😷 needed though 😳
Tobias now is professional with Chinese cooking 👨‍🍳
Speciality Sichuan food 😆
Of course following my instructions/ recooked my recipes 😝
八宝粥 (8 treasure congee) from the can 😁 makes me happy 😃
I have tooth pain. But I don’t want to pull my last wisdom teeth out 😖😩
So, dentist gave me an ointment to soothe my discomfort 😒
Teriyaki salmon by chef Tobias ❤️
Went for ice cream 🍦
Tobias had a strawberry spaghetti ice cream
I had an ice coffee (black coffee with vanilla ice cream 🍨) 🤤 👍
After ice cream 🍦, we strolled the park
Morning tea routine 🍵
Still able to write/type on my iPhone 👍😊

32 Replies to “5 MINUTES OF YOUR TIME FOR PRAYER”

  1. Thank you for continuing to update Titien ♥️ Seeing your post made my heart smile today. And, I now know what 8 Treasure Congee is! I actually thought it was something sweet from seeing your picture. It is 100% something I will try someday & I will think of you & Tobias. Always praying for you both.

    1. Haha 😆
      Thanks Karen 🥰
      Yep, I love 8 treasure congee (Asian stuff), not for Tobias though 😂. But yeah, at least you gotta try once 😂.
      Thanks for remember me and my family in your prayer 👍🤗
      Love ❤️, – Titien

  2. So glad seeing another of your posts 🤗
    Sriosly wish praying might change something. Even if it just changes the mindset of the praying person, being more thoughtful and considerate.
    Every day is a struggle for you. But each day you hold up is an invaluable day more for you and Tobias. Was smiling with warm feelings looking at your photos.
    Wishing you the strength to go on, enjoying the begin of summer.

    Hot chili flavors greetings!
    Holger

    1. Hi Holger chili plant 😁,
      Thanks a lot my friend 🥰
      You too, keep smiling and keep spicy 😂
      Happy summer 🐝
      ❤️, – Titien

  3. I was so happy to know you are strong enough to write! I love reading your posts and you are always in my prayers! Congee is my favorite too! 🙂

  4. Titien,
    I was so happy to have this post from you and to see your sweet self on your couch typing. ❤️
    I am praying that you do not suffer from a lot of pain. You didn’t mention headaches but I imagine you must have them at times. I am so sorry that a wisdom tooth is giving you pain and discomfort. I hope what the dentist gave you will help to numb that pain.
    I am praying for you and for Tobias. I pray you are both comforted by God and that your sleep will be restful. I pray for you to have good days and enjoy each other to the fullest. Eat something you love and get another coffee with ice cream. I bet that is good.
    I am praying for all of those in need. I am praying for DIPG families. I am praying for all of the front liners. I am praying for those who keep their needs silent. I am praying for people in the US. We are having riots in major cities. Buildings are burning, stores are being broken into and people are stealing merchandise. 😞😞
    This is happening because a horrible police officer actually kept his knee pressed onto the back of a man’s neck as he lie on the pavement. The man was unable to breathe and he died. The policemen involved need to be charged with murder. I am praying for the dead man’s family. I am praying for all people to quit being racists. We are all God’s children. It is so sad that this happened.
    We have been seeing people come closer together, helping each other during this uncertain pandemic. Then this killing happened so senselessly.
    I am praying that you will enjoy the songs of the birds, smell the fragrance of the flowers, enjoy the sounds of the river flowing and be at peace in all of God’s glory.
    Sending Love, Hugs and Prayers for you, my precious friend. ❤️🤗🙏

    1. Thanks Rita ❤️😘
      You have a very kind and beautiful heart ♥️
      Don’t worry I have pain management drugs here, so I’ll be fine 👍😊.
      Thanks for praying.
      Thanks for remember me and my family in your prayer, that means a lot for me 🤗
      Yeah, I hope my last wisdom tooth won’t cause problem in the future 😩
      Anyway, it’s so crazy in the us from your story Policemen supposed to protect, but What’s with racism 🙁😢
      Keep shining Rita ☀️
      You make a difference with your love and kindness.
      Stay happy and healthy 🥰
      Love, Titien

  5. You’re eating well Titien! Good job chef Tobias! Thank you for the reminder and the nudge to pray for those we see everyday. People we know and don’t know. Prayer is the foundation for changes to happen. Yes indeed. Praying for you! And now adding the people in the various US cities protesting, looting and clashing with police. May God bring healing, peace and justice His way. Keep going! So grateful for your writing.
    . Lots of love ❤️ from LA.

    1. Thanks Joyce 🤗
      Yep, Tobias makes me eating well with Chinese food 😂
      Yep you’re right, prayer is the foundation for things to change.
      Thanks for being a prayer warrior in your city. 👍 you’re awesome.
      Thanks for reading and remembering me in your prayer.
      Love, Titien

  6. I’m so happy to see you’re still around and enjoying life despite the discomfort and restrictions you’re having to put up with. You, Tobias and your family are always in my thoughts and prayers. You are making me a better and more prayer-focused person, Titien, through your example and your selfless compassion for other sufferers. May each new day bring you joy, love, excellent food and many “ice monsters”.
    Love
    Elisabeth

    1. Thanks Elisabeth 🥰😘
      Haha yeah we all are becoming ice cream monsters (I believe you too 😂)
      Thanks for remember me and Tobias in your prayer and thoughts.
      I am very happy to hear that my stories somehow inspired you.
      Jeep shining, stay happy and healthy Eli.
      Have a wonderful holiday 😘
      Love, Titien

  7. gilaaa pengenn banget nyobain masakan si chuan nya tobias.. beneran enak tin? hahaha

    jiayou yaa 😉😉

  8. Dear Titien, I am so sad to read that the treatments are not helping anymore. It makes my heart ache. You are such a strong woman full of love. You are spreading your strength and your love with every one of your posts. You help me to think and see things positive. The love you and Tobi share is so special, I can feel it even though I never see you and never got to meet you. You will always be in my heart and in my thoughts. Love to Tobi and you. Betti

    1. Dear Betti,
      Thanks for your uplifting comment. I’m so happy to know that you’re inspired by my stories 😁 To stay positive and knowing what matters in life.
      Keep shining and show love ❤️ 🤗
      Thanks for remember me and Tobias in your heart and thoughts 😊
      Have a wonderful week Betti
      Love, Titien

  9. I just came across your site and I am in awe of your beautiful transparency and how in the midst of all you’re going through, you are praying for others. I am praying for you and your sweet husband. <3

    1. Thanks Nancy 🤗
      Thanks for remember us in your prayers and thoughts 👍😘
      Have a wonderful weekend.
      Love,
      Titien

  10. Titien you are so special person and Im
    Glad I have had the pleasure to know you . The way you embrace life and love despite adversities is an example of strength and hope for everyone . I wish I could do more for you than a prayer . You and Husband are words of God on Earth . Please keep on writing to us . Please stay with us as long as it is bearable for you . You won’t be forgotten Titien . I pray for you dearly . Will miss you .

    1. Thanks Rosi 🥰
      I’m glad to know you too, even though it’s short.
      I wish all the best in your life,
      stay happy and healthy.
      Thanks for remember us in your prayers and thoughts.
      Have a wonderful weekend 😘
      Love,
      Titien

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