I follow the page of DIPG Support and Awareness. I read a girl today celebrating her 8 years old birthday, she is 4 years living with DIPG. An odd and wonderful story in DIPG world.
But most of the posts are showing many new face of kids diagnosed with DIPG, many struggles with pain, and many gained their angel wings.
My heart sank, broken, grieve.
DIPG is brutal, it’s cruel. It’s incurable, lethal tumor.
Once you diagnosed with DIPG, you will face surgery, treatment, radiotherapy, chemo, blood tests, sedation, MRI, drugs, etc.
Early November 2017, my MRI result showed progressing of the tumor. The first-line (worked best) treatment (Temodal chemo) DID NOT WORK. My doctor then suggested second-line treatment.
The doctor arranged me to start the second treatment tomorrow, but my white blood cells a little bit low, so the doctor postponed my chemo. I have to take blood test again next Wednesday.
::: WHY IT DOESN’T WORK?
A question I believe everyone will ask when facing disappointment, failure.
After I patiently waited and went through all this pain and uncomfortable treatment. Why the chemo didn’t work?
I have hundreds of prayer warriors praying for me. I want to get something accomplished with God. What about God’s power and promise “I come to heal”, “Nothing is too hard”. Why the tumor is growing ?
But answering that “why” question leaves many more unanswered. “In the course of life he broke my strength; he cut short my days” (Psalm 102:23). My Lord is almighty, but that doesn’t give me the problem-solving God I want.
I don’t know why God allows DIPG.
I don’t know why He doesn’t fix my and your problems.
I am a good person, a wife, a daughter. Would this not be a perfect time to show his mighty and merciful power?
And those pure heart children, don’t they deserve longer life with happiness and not pain?
Many including me feel angry, lost, hopeless, give up.
I look at my past, found many experiences with failure. In study, in work, in investment, in relationships. Seems pain is unavoidable, necessary in life, it demand to be felt.
I survived from problems in the past, out in a bad shape. I hate, I distrust, I disappointed with God and people. I live unhappy.
I asked my husband about failure. As a scientist, when his science paper got rejected by publisher, when business was not working, when failed get the project, when decided to leave Barcelona, when relationship failed. He invested so much time, effort, and energy.
Tobias said he was angry, but then accepting the situation when his paper got rejected and business did not work. He was devastated quite some time. But then he’s understand what he wants, what he’s good at. Now, he is grateful and happy for what he’s doing. He is not regretting all the decisions he made in the past.
Then he said: “With you, it’s never an INVESTMENT OF TIME. Because I want to be with you. Everyday, every moment”.
I learned that everyone have their own way of dealing with failing situation. Simply part of life that shape you for who you are now
::: REMEMBERING AND TASTING GOD’S GOODNESS
So, answering WHY?
I don’t know.
I exercised, I ate well. I asked God, doctor, family and friends. I cry and scream. They welcome my grief and confusion. But still no answer.
HOW TO COPE when it doesn’t work?
1. EMBRACING the pain of disappointment.
2. ACCEPTING the situation although it’s hard.
3. LEARNING that waiting God and praying is not an investment for healing nor for a ticket out from this crappy situation. It’s a true love relationship.
4. SURRENDERING, to be active but to trust God for the outcome, no matter what.
“Sorrowful, yet always rejoicing; as poor, yet making many rich; as having nothing, and yet possessing everything” 2 Corinthians 6:10
5. REMEMBERING God’s goodness.
Reason I can’t deny my faith is because I had encountered Him and experienced miracle.
For DIPG/cancer warriors and fam, for you who are hurt, devastated, disappointed, hang in there. It is hard and painful not knowing why, not knowing what future holds. I know how you feel including the fear. But be still, you are loved, and be brave, you are not alone, many little but brave warriors fight the same battle. I pray for healing miracle and breakthrough miracle in medicine with this incurable illness. I pray for the peace that surpasses all understanding will guard your hearts and minds. Amen.