As per today, the COVID-19 pandemic has already affected 212 countries, more than 3.8 million people, and taken more than 265.000 lives.
Yesterday I watched on YouTube, a documentary about people who died alone from COVID-19 without their loved ones beside them. I can’t imagine how painful it is for the dying and their loved ones.
I saw the rising threat of the pandemic,
there’s hunger and famine,
ending in catastrophe.
Meanwhile, another child died from DIPG.
Everyday, I hear this kind of news.
I feel hurt, angry, heartbroken and devastated.
I complained to my Heavenly Father,
there’s so much tragedy, suffering and injustice in the world.
I asked Him to do something,
but nothing is changing.
::: PATIENCE IS ESSENTIAL
I finally got my appointment for FET-PET Scan next week Thursday, May 14th.
Even though we explained to my doctor the urgency of my condition,
I still couldn’t get an earlier date than that.
It’s beyond our control.
When things don’t go my way,
and yet I have to make decisions,
and yet there are times I can’t control.
I want God to act on my timetable.
But He’s not.
This requires me to be patient.
It takes courage to be patient.
It takes courage to walk by faith and not by sight.
It takes courage to surrender to His timing and to His will,
It takes courage to put hope in His words.
It takes courage to be confident in His characters.
It takes courage to trust Him,
with joy, peace, hope, assurance of His goodness.
Tobias said that being impatient is easy to default to anger and fear.
So, we just take one day at a time,
and enjoy the time we have.
Impatience doesn’t cure, doesn’t heal, doesn’t fix anything.
::: TRUST GOD LOVES YOU
Then, yesterday the radiologist called us.
He told us, if from the PET scan,
they see a progression outside the brainstem, they will do the 3rd round of irradiation,
but if they see a progression in the brainstem,
they cannot re-irradiate,
because I already reached the limit dose with my previous two rounds,
they don’t want to risk potential side effects.
This news was very difficult for us to swallow.
But, this is what’s in my heart and in my mind:
Though everything around me is crumbling,
though I’m experiencing suffering,
though I feel destroyed,
though I’ve seen the suffering of mothers who lost their children to DIPG,
though I’ve witnessed a friend’s marriage crumble,
though I’ve seen someone is struggling with addiction and get the best of him,
though I’ve heard many health care front-liners loss their lives helping COVID patients,
though I’ve heard all fallouts the pandemic brings,
though I realized that difficult times are coming,
though there are so many injustices and so much violence in the world,
though trial comes against us,
I will not rely on my own understanding.
I will not rely on my own perception and expectations.
But, I will continue trusting God,
in His timing and in His way,
He has a greater plan for me and the world,
than the pain, hurt and sadness,
that we’re suffering.
I trust He loves us perfectly.
since I live with terminal cancer DIPG,
I never lack anything.
Instead, I feel so content.
I feel loved sincerely.
Everyday, my love Tobias makes me the happiest woman in the world.
He gives me his everything, his life.
God’s grace is sufficient for my every situation.
Thus, I will keep trusting Him.
I don’t know the amount of pain or anguish you are facing now,
but I do know your best choice is to continue
trusting Him and trusting His words.
There’s one day when God will wipe away every single tear from our eyes,
we have that guarantee in Christ.
that one day our current situation will be transformed into an eternal glory.
now our circumstances might not be changed,
our questions may not get all answered the way we hoped for,
but He will transform our worrying heart into a worshiping heart.
Choose trusting that God loves us,
choose banking our hope on God no matter what,
and choose taking joy in the promises of God.
“Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights. For the director of music. On my stringed instruments.”
Habakkuk 3:17-19 NIV
“”but the righteous shall live by his faith.”
Habakkuk 2:4b ESV
::: UPDATE ABOUT ME
3 Years Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
On Wednesday, May 13th I will receive the 32nd round of Avastin. My doctor still wants me to continue with this treatment.
Meanwhile, on May 14th I will have a FET-PET-scan to see where is the real progression.
I am getting worse pretty rapidly, day by day.
For now, I increased dexamethasone to 8 mg daily. 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 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.
Please go to “My Medical History” for more details.
Thanks for remember me, Tobias and my family in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts.
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17 Replies to “JOURNEY OF FAITH”
Always praying & thinking of you & Tobias. Thank you for updating & I’ll be storming the heavens on the 14th Titen
Thanks Karen for remember me in your prayer 🙏🥰☺️
Thanks Rob for remembering me in your prayers 🙏🤗
Thank you Titien for sharing your day to day stories, and the way you are dealing with everything.
I lost Libi, my 6 years old baby boy, to DIPG, 18 months ago after struggling for 9 months.
My family moved from Israel to NYC, trying to seek the “golden flower” that will cure our boy but we didn’t succeed.
I pray God of you and draws a lot of power from your blog.
Thank you so much
I’m very sorry you lost Libi 💔.
I hope that you get much comfort and love and strength and peace day to day.
Thanks for following my stories.
Thank you for remember me in your prayer 🙏☺️.
Special prayers for you & Tobias, in particular on the 14th!!!!!!!!!!!
May Jesus let you feel His loving presence throughout this ordeal.
Thanks Elisabeth for remembering us in your prayers 🙏☺️🥰
Titien praying for you in this difficult time. God loves you!
Titien praying for you, especially for the 14th. God loves you!
Hi Ricat 😁,
Lama gak kontak,masih inget kenal di bicf dan lu main drum keren banget.
Thanks ya for remember me in your prayer 🙏🤗
Blessings, – T
Thanks for remembering me Ci 😊
Sip 😊 Salam buat istrimu yang cantik. I don’t know her but I see her IG, she’s smart, wise, kind and beautiful. You’re a very lucky man 👍😁. Stay safe and stay healthy 🤗
Dear Titien, we think of you and Tobias every day, and include you in our own reflections on life and death and everything that happens in between. You are a source of inspiration for us, just like Tobias is.
We hope to see you in July, when we (COVID-19 situation I mind) come back to Germany.
Sending you strength, embraces and lots of love from Chile.
Hi Ulf and family 🥰
Thanks for your encouragement.
I hope everything goes smooth with going back to Germany from Chile.
Looking forward to see you again soon 🤗
Stay safe and stay healthy ❤️
You are an amazing person.
Thanks Marcus. Have a wonderful week, and stay healthy 👍😊