As per today, the COVID-19 pandemic has already affected 213 countries, more than 5.3 million people, and taken more than 340.000 lives.
We’re living in a time in human history,
where the world stands very precariously in the edge of some next catastrophe.
The news is inundated with pandemic, calamity, natural disaster, hungers, conflicts, struggles and pains.
It’s quite tense for me to hear this everyday.
I can see how small and insignificant we are as human beings.
::: LOVE GOD
Yesterday, the hospital finally called.
They told us the result of FET-PET scan. They saw a progression in my brainstem, and there is nothing they can do about it.
No chance for irradiation,
and they want to stop the Avastin because it no longer works.
I now need palliative care towards the end of my life.
I don’t know how long I will be here.
But I know that in surrendering to God’s will I win.
this is where my heart has been in my writings.
To tell you that you’re born loved.
Life is full of surprises.
But, it doesn’t mean that it is meaningless.
These 3 years, living with DIPG,
that we are not an accident.
God is able to heal us to be whole.
We have our stories.
when we let our heart be transformed,
we know what our purpose is in life.
Why we exists.
it needs a process to digest all of these things,
it’s our choice,
to pursue or to ignore,
but from my experience,
I finally found His forgiveness, His grace, and eternity,
It’s worth it.
This liberates me,
this makes me experience joy,
this is all about the gospel,
this is all about the cross,
pointing out that
::: BE A GIFT TO HUMANITY
I hope you can see through the humanity.
That everyone despite their ethnicity, status, ability, disabilities, have their worth.
We are equal.
I told you on my last post that lately I woke up at 4 am.
Sometimes I imagine what if I was healthy.
I want to be friends with the refugees,
I want to be friends with the elderly that are left alone in old people’s homes,
I want to be friends with the disabled kids,
I want to be friends with the homeless people,
I want to know them.
I want to share love to others,
because I have God’s love in my heart, my mind and my soul.
never violate others.
Love is to reign.
Let’s bring help to those who need,
bring prayers to those who need,
bring hope to those who need,
bring liberty to those who need,
bring courage to those who need,
bring kindness to those who need,
and so on.
the only question left for us to answer is do we live according to these commandments?
Do we truly love God with all of our hearts, with all of our souls, and with all of our minds?
Do we really love our neighbor as ourselves?
Well, if we’re truthful with ourselves,
we are often failing.
But, He is the perfecter of our faith.
He will guide us faithfully.
“Je “Jesus replied, “‘You must love the LORD your God with all your heart, all your soul, and all your mind.’ This is the first and greatest commandment. A second is equally important: ‘Love your neighbor as yourself.’ The entire law and all the demands of the prophets are based on these two commandments.””
Matthew 22:37-40 NLT
“But God showed his great love for us by sending Christ to die for us while we were still sinners.”
Romans 5:8 NLT
::: UPDATE ABOUT ME
3 Years Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
On Thursday, May 27th I will receive the last 33rd round of Avastin. My doctor wants me to stop with this treatment, it no longer works.
Yesterday, the doctor called that from FED-PET scan they saw a progression in the brainstem. They can’t give irradiation and no more drugs for me. So, no treatments available anymore.
I am getting worse pretty rapidly, day by day.
For now, I increased dexamethasone to 14 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 difficulty moving out from bed, 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.
I’m truly blessed with Tobias.
I have nothing else to ask for,
I have everything in him.
God gave me more than I could have imagined.
He is my earthly rock.
Tobias knows what I want in the end.
I will stay home for as long as possible and not in a hospital room.
Please go to “My Medical History” for more details.
Thanks for remembering me and my family in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts.
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