Teen dealing with life change: CML, Processing and 2nd Opinion

I just did not know how to process this abrupt halt to life as I knew it. I had worked so hard over the past 2 years for this IB Diploma, accepted by European and UK universities. I had handed in all my papers, research papers, clocked in my CAS 150hours outside of school time, finished two years worth of coursework. And I was supposed to stay home, play sick while I was supposed to prepare for final exams?

The only place I could go to was the Beijing Teaching hospital and I had to wear a mask to protect my fragile immune system. Thankfully I didn’t have long to mope about at home, bolting myself behind my bedroom doors so I can have the freedom to mope and regret this new life turn. To those at home, I tried to maintain my cheerful attitude but couldn’t help to snap out at being treated so vulnerably.

I tried my best to reach out to a few of my closest friends to share the real reason why they aren’t seeing me in classes. Also my friends in my previous school whom I am bonded with more closely had come to visit me in hospital to meet a brave and smiling face. I didn’t know when I was initiated into the world of dark humour as a phone call to a friend who had relocated to Hong Kong proved. I had tried to crack jokes and shine a positive light on things when her laughter suddenly turned to sobs. Oops…my jokes might have gone too far. 

My close friends started to see me as this strong warrior where inside I was falling apart. The world as I knew it had changed. I mean everything was exactly the same, but just the thought that my future was snatched away from me without a single heads up…..

At the age of 17, I could still rest in the safe comfort of my parents doing all the worrying and researching and finding out my available treatment options. It was through my experience, I realised how blessed I was. My dad found favour with his bosses who pulled strings to get me immediate medical attention worldwide. Even in those moments of silent tears, heart wrenching sobs and shouting into my pillow or wadded up towel “WHY GOD??? WHY ME??? WHY NOW?? WHAT DID I DO WRONG?? ARE YOU PUNISHING ME FOR BEING BAD???”

I listened to Christian songs, I clung unto with dear life to verses my parents shared with me to encourage me: 

For I know the plans I have for you,” declares the Lord , “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11 NIV

 

 That means, God did not give me CML to punish me, no matter go through, we shouldn’t see it as bad karma or universe hates us, or there is no God. God is good, and God is love. Many times, I would struggle with how if God is good, bad things can happen to a girl who tried her whole childhood to be on her best behaviour, loved God and wasn’t afraid to tell her friends about God and even risked social exclusion. I would cry and cry in my room, the only place I could honestly deal with my situation, and after each time, it was as if invisible arms cradled me close and soaked away all my tears and negative feelings weighing me down. I would feel comforted, and the truth of God’s word would be revealed to my mind, reach deep down into my soul. I was assured, over and over again throughout each consecutive year that anything that happens to us, God will work it out for our good in the end:

And we know [with great confidence] that God [who is deeply concerned about us] causes all things to work together [as a plan] for good for those who love God, to those who are called according to His plan and purpose.

ROMANS 8:28 AMP

I listened to Lynda Randle’s song “God on the mountain” over and over, repeating those words with every shred of faith I had accumulated over the years of my childhood “For the God of the mountain is still God in the valley, when things go wrong, He’ll make them right. And the God of the good times is still God in the bad times, the God of the day is still God in the night.”
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So many Christian songs ministered to me and I played certain tapes from my childhood Kid’s praise and Sunday School sing a long over and over again. There were countless times I felt no one understood, it felt like the end of my life as I knew it. More scientific research on the internet brought more hopelessness as the only cure to this CML (Chronic Myelogenous Leukaemia) was a bone marrow transplant, then again, one might not always survive it with a 50% chance of graft Vs host infection.

When my parents shared with me that my dad’s NGO had arranged a short term trip for the whole family to travel to Thailand for a second opinion, hope rose within me like a sleeping giant. Perhaps these Chinese doctors were wrong….perhaps what I have isn’t as terminal as CML. Even if I did have it, between my parents and two siblings, I should be able to get a genetically matched donor for bone marrow cure right? 

Five suitcases packed, we traveled to Bangkok, Thailand. After meeting a highly recommended doctor in my field, I went through another series of tests and confirmed the initial CML diagnosis. Each member of my family were also tested as potential donors. 

In between waiting for test results, we explored the city around us,and I took comfort in similar cuisine to my motherland of Malaysia, explored night markets and got some beautiful fabrics for wrap skirts. Watched movies back at our room, and tried to browse the net in the internet cafe next door. Parents insisting on a healthier diet, my initial protests aside, I settled in to enjoy their tropical fruit, fruit juices…their fruit selection so similar to my motherland of Malaysia:

The results back, but none of my parents and brothers were a close enough match to be a good donor for a bone marrow transplant.