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.
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
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.
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 ❤️
“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.
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