Friends, I’m still here.
So, I’m very happy to share with you again the thoughts I had lately.🤗
Though it’s very hard for me to read,
and type on my iPhone, but with patience I can do it.
As per today, the COVID-19 pandemic already affected 213 countries, more than 11 million people, and taken more than 600.000 lives.
We’re not only fighting the COVID-19 pandemic.
There is rising acute hunger,
especially in Syria,
they have to face wars,
children go to bed hungry,
they are left with nothing at home,
but famines and fear.
::: ALWAYS REMEMBER
I give thanks for a brand new day.
I always wake up at around 4 am
before the birds start their orchestra. 🎶🐧
When I wake up I remember,
to devote some thoughts,
How He cares about me.
How He was crucified for me.
How I found forgiveness in the hands of Jesus!
It roots me in reality,
while at the same time pointing me toward eternity,
Jesus is the founder and her perfected my faith,
I am never left alone,
He even gave me my love Tobias,
He forgave me,
He reconciled me with Him,
by sacrificing His only Son for me,
I am loved,
therefore I always rejoice.
::: SPECTACULAR REJOICE
Well none of us is immune to hard times,
maybe we’re starting our new day,
forgetting to be thankful,
we’re busy with our itinerary,
focusing on our difficult circumstances,
focusing on our illnesses,
struggling with guilts,
focusing on what we don’t have,
struggling with addictions,
feeling not happy with our life,
feeling we live a meaningless life,
going through a divorce,
and so on.
often we’re rushed,
and forget it’s a new day.
If He gives us a new day,
He wants us to celebrate our life,
not only focussing on our difficulties,
but be also to be in awe and wonder,
of our surroundings.
Often we forget to take a silent minute.
To remember we are loved.
To remember His sacrifice for us.
Often we forget to pray to our Heavenly Father.
There’s nothing magical about our words.
Our prayer is not a formula.
Every morning when I wake up,
I prayed like this:
‘’My Father in heaven,
hallowed be Your name.
Your kingdom come,
Your will be done,
on earth as it is in heaven.
Give us this day our daily bread,
Forgive me my sins,
as I also have forgiven my sinners.
And lead me not into temptation and trials,
but rescue me from evil one.
For if I forgive others their wrongdoings,
my Heavenly Father will also forgive me,
but if I do not forgive others their wrongdoings,
neither will Father forgive my wrongdoings too.
Thanks Father for Your Cross.
Thanks Father for giving me eternity.
Thanks Father for loving me.
So, even in the impossible circumstances,
It’s possible for me to be rejoice,
because every time I wake up,
because every morning when I still breathe,
I just can’t complain, murmur or grumble,
but just to smile,
because I trust Him.
A new day brings me new hope,
and offers a fresh start.
I know I am redeemed, restored, repurposed.
I know I am cherished, loved, and hope-filled.
His grace and mercy is sufficient.
I trust His Sovereignty,
each morning I give Him,
praises and adorations.
I know my identity,
I know my eternity.
How can I not rejoice?
let’s embrace the new day,
let’s embrace the new things,
let’s blesses and love others,
always remember His sacrifice for you,
because you’re matters,
because you’re loved.
Remember it’s a gift,
remember it’s a brand new day for you,
remember to be joyful.
Check this out:
“For while we were still weak, at the right time Christ died for the ungodly. For one will scarcely die for a righteous person—though perhaps for a good person one would dare even to die— but God shows his love for us in that while we were still sinners, Christ died for us. Since, therefore, we have now been justified by his blood, much more shall we be saved by him from the wrath of God. For if while we were enemies we were reconciled to God by the death of his Son, much more, now that we are reconciled, shall we be saved by his life. More than that, we also rejoice in God through our Lord Jesus Christ, through whom we have now received reconciliation.”
Romans 5:6-11 ESV
::: UPDATE ABOUT ME
3 Years 2 months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
Now, I have palliative care.
No further therapies are available for me.
I have an oxygen bottle ready at home in case I need it.
I have no oncologist anymore.
But my resident doctor came on Monday and checked my blood sugar,
because I am still taking cortisone at high doses
Today, a special bed was delivered to our home.
I can with the push of some buttons change head angle, hight and leg space inclination.
so in the morning Tobias can move me there and I have it easier to breathe.
I am getting worse rapidly, day by day.
Following the advice of my doctors, I decreased dexamethasone to 14 mg daily.
I am retaining so much water in my body.
I currently take 6 mg after breakfast (9 am), 4 mg after lunch (12 am), 4 mg after coffee (3 pm). I am planning to lower the dose further, 2 mg every five days or so.
Dexamethasone doesn’t slow down my symptoms from worsening.
I am getting weaker everyday.
Yesterday, Tobias went to get us something to eat from a local kebab shop.
While I was left alone sitting on the sofa
I reached for my iPad and I just fell over.
Luckily it was a soft fall and a comfortable position
I was falling on the sofa,
But I had to wait like this, hanging on the sofa,
For Tobias to come home and help me back into upright position.
That’s the situation now. My muscles essentially stopped working.
I have trouble holding my head straight
Tobias needs to be extra careful when he moves me around
So I don’t hurt my neck.
Honestly, I cry a lot lately.
I depend 100% on Tobias.
I have to learn to be patient with myself and trust that I don’t burden Tobias.
Everyday I have to deal with the feeling as if my head is in a cloud,
Tobias brings me to the toilet whenever I need to go,
he moves my body according to how I want it,
he sits me up straight on the sofa,
he sits me up early in the morning so I can breathe,
he showers me in the morning,
he creams my body after showering,
he prepares breakfast, lunch, coffee, and dinner,
he knows I drink my tea with honey,
I communicate with Tobias mostly by typing on my phone or by pointing fingers.
I keep asking him for eye drops all the time,
I have severe head pressure,
I have severe double vision,
I deal with tingling pain 24/7,
I need help with everything.
I lost control over most of my bodily functions.
I lost control over all my muscles.
Tobias has cancelled all of his seminars and workshops from now on forward.
He is now just focusing on my needs.
Tobias hugs and kisses me a lot,
he shows affection to me a lot,
I can’t hold anymore my neck and feed the ducks 🦆,
but watching our birds on our balcony,
makes me extremely happy.
I love you, my Tobias ♥️.
Please go to “My Medical History” for more details.
Thanks for keeping us in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts.
Please subscribe to get updates by mail . 🤗
21 Replies to “A BRAND NEW DAY”
Dear Titien, thank you for writing a wonderful post again. You are in my thoughts and prayers often. I wish so much that there was a cure for DIPG and you could get healthy. You are such a kind woman and deserve only good in this life. God bless you!!! Much love and happy weekend to you!
I’m writting from Panama.
I can not express with words the admiration I feel for you!
I really wish there’s a cure for DPIG!!! Keep fighting , you are an example for all of us.
Thanks Joss ♥️😘😊
Greetings to Panama 😃
Yes, my wish is a cure for DIPG.
Have a wonderful weekend.
Thank you so much Titien, for your posts. You are a gift and I appreciate you and your wise and generous words. I pray for you, and I thank God for your Tobias. I shared this post on my FB page because I feel you give so much. Personally, you always give me gentle reminders to look beyond any limitations, fears, or struggles I may have, and I am so grateful for you. 🌼🌸🌻
Thanks Lisa ♥️
For your encouragement and remember us in your prayer. 😘😊
Have a wonderful weekend and enjoy the warm summer 🐝🤗
Liebe Titien, die Krankheit mag dir die Fähigkeit genommen haben, in die Kamera zu lächeln – dafür strahlt jedes einzelne deiner Worte umso mehr! Ein Feuerwerk aus Mut, Ehrlichkeit, Vertrauen, Dankbarkeit, Hoffnung und Liebe…
Du bist eine wahre Inspiration, ein “Finger an Gottes Hand”.
Ich bin sicher, du wirst im Himmel laufen, tanzen, singen und nicht aufhören zu lächeln! Und ich freue mich darauf, dich dort einmal kennenzulernen.
Ich denke so oft an euch und bete, dass dieses harte letzte Stück der Wegstrecke dennoch zu einer wertvollen Zeit für euch wird mit ganz besonderen, kostbaren und innigen Momenten, die Tobias als Schatz in seinem Herzen aufbewahrt…
Alles Liebe, Claudia
Sorry for posting in German, my English is so bad!
Thanks Claudia ♥️
Yep, I’ll see you in Heaven 😆🤗
Till then, stay shining, stay happy and healthy Claudia 😘
Enjoy the wonderful summer 🐝
This post was heartbreaking for me to read and now I’m really emotional because I can feel your pain and hurt. I also feel the peace that you have in God but it’s still difficult. We know our God is a healer and he will continue to give you strength to not be weary and mount you up with wings like eagles. He is your strength and your help.
A comforting Psalm for you.
“I lift my eyes toward the hills. Where will my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not allow your foot to slip; your Protector will not slumber. Indeed, the Protector of Israel does not slumber or sleep. The Lord protects you; the Lord is a shelter right by your side. The sun will not strike you by day or the moon by night. The Lord will protect you from all harm; He will protect your life. The Lord will protect your coming and going both now and forever.”
Psalms 121:1-8 HCSB
Thanks Shakira ♥️
Love the psalm 121
Yes and amen 🙏
Love ❤️, Titien 🤗😘
It is always so good to hear and learn from you and be gently guided in the right direction (Jesus).
You and Tobias are in my thoughts and prayers at all times. May your discomfort and pain be minimised, and may Jesus take extra special care of you two.
A big 加油 to you friend. You are in our prayers everyday. Thank you for encouraging us with what you share. Always looking forward to read what you write. Your testimony is being heard by many people.
Linda and I celebrated our wedding anniversary last week. It’s just one day after your birthday.
Good bless you!
Sorry my dictionary keeps changing your name 😜
Thank you ♥️
Happy wedding anniversary 🤗
God bless you too
Have a wonderful summer 🐝♥️
Dear Titien, just know that we love you and are all around you in spirit 😘
Thank you Marcus
Have a wonderful summer🐝
Love you too ♥️
I have been following your story and wanted to send you all of my positive thoughts and positive vibes, thank you for sharing your story with the world and inspiring people with your strength. Many of us would struggle to cope with DIPG in the way and with the grace you have. I hope the pain subsides soon and that you continue to have the ability to enjoy the small things in life (such as your birds) for as long as possible. My heart truly breaks for you and your suffering but I have hope that it won’t be in vain and that what you are going through today, will help find a cure for kids and adults with DIPG tomorrow.
Thank you for teaching us the real definition of strength, true love and grace.
You have definitely left your mark onto anyone who has come across your story and on our beautiful planet.
Lots of love and hope all your prayers are answered soon, whatever they may be! x
Hi Melissa ♥️😊
Thanks for reading my stories and for your uplifting comments and encouragement.
You’re so sweet and kind 😊
Thank you for remember us in your prayer.
Stay shining, happy and healthy 🤗
And have a wonderful summer 🐝♥️😊
Hello from the USA, Titien!
I have been following your blog for just a few months now, and the strength of your faith is beautiful. Your story has had a profound impact on me: Most of this year, I have been struggling with religion, but your testimony has been a major factor that inspired me to pursue a relationship with Christ again. I am a graduate student in biology, and I am starting to think my calling might be DIPG research.
Thank you for sharing your thoughts here, your blog truly touches me! Praying that God gives you serenity and comfort. 💓
Thanks Katie ♥️
Whatever your choices
I’m sure will benefit us 👍❤️
Thank you for keep shining
And stay happy and healthy ya
Love ❤️ Titien
Stay strong and don’t panic want comes next. These are the words my daughter said to us. I pray for your health and well-being
Thanks Ashwini ♥️
With Tobias by my side.
I feel loved.
I am not afraid.
♥️Thank you for remember us in your prayer 😊