You’re my God,
To You alone I put my hope,
trusting Your goodness and mercy.
But today I felt devastated,
The tumor is growing greater than I can bear,
no more established chemo drug can fight it,
I might go back to radiotherapy,
an off-label prescription of avastin is the last resort,
and I see my fellow fighters one by one passing away,
leaving so much grief and pain,
the end awaits me.
When are you going to lift us,
to fight off this dipg?
Will you give us more good years to live?
Will you keep us free of symptoms?
My prayer becomes unspoken,
only tears flowing.
I looked at my love, Tobias,
and I remembered Your amazing works.
I was unhappy and You healed me,
This past 2 years were the best and the happiest time of my life.
I was feeling lost and unloved, and You looked into my heart.
You gave me Tobias, with him I feel I arrived. It’s like a dream come true.
I was betrayed and destroyed,
and You wiped away my tears,
with Tobias I never miss one day without laughter.
I was not talking with my family,
and You restored my family relationship.
We’re close now than ever.
I am dying,
and yet You let me sleep safe and sound, waking up feeling free, next to my love.
My sight is impaired,
and yet You taught me to see with love.
My flesh is failing,
and yet You show me friends sustaining me with care and prayers.
Much more kindness I tasted,
I experienced miracles,
I am healed, I’m blessed.
LORD, I don’t understand You,
it’s too wonderous for me to reason You.
but one thing I believe,
that You’re holding my hand,
and I’m holding on to You,
my Prince of Peace.
::: UPDATE ABOUT ME
19 Months Post Biopsy
Midline Pontine Glioblastoma (DIPG) Grade-IV
The MRT result showed the tumour is progressing.
The Doctor said that without treatment, the prognosis of my survival is in weeks to months.
There’s no established chemo drug anymore for me to prolong my survival. Our doctor mentioned a possible off-label prescription of avastin.
We talked about ONC201, an experimental compound currently in stage II trials. If at all available then also only for compassionate use.
She then offered me to do the radiotherapy again for the 2nd time. I asked for other patients experience with 2nd time radiation, unfortunately I am the only patient with dipg who’s going for 2nd time radiation.
I’ll meet the radiotherapy doctor on Monday, meanwhile now start taking dexamethasone.
Appreciate your prayer 🙏