In the last 3 weeks, many things have transpired. I have travelled miles again to look for anything that may help to stabilize my precious girl’s disease. Along with a supportive friend who wouldn’t allow me to travel alone, we flew and decided that it may be worth a try. It wasn’t conventional, but at least we were still trying to give her body a chance to fend off the ever mutating cells, or whatever you call it, while she is recovering from her last chemo.
We are here now. It has been 2 weeks. In this foreign country, we were thrown with more unwanted discoveries. The system here doesn’t well with me, coming from different cultures and practices. I have had to deal with many medical challenges on my own and was strangely grateful to the journey preceding this. The 2 years have taught me a lot, precious in-depth life lessons, and medical knowledge which I am not sure that I wanted to learn anyway. However, moments like these, armed with knowledge like that was invaluable.
Sometimes, I wish I could write more but I dread my own negativity. On rare painful occasions, I find myself hitting my head hard, trying to knock those negative thoughts out of my head, my brain. But they stayed stubbornly. Occasionally, I would read an enlightening book which will bring some reprise from all these. But come morning, I wake up knowing that I have to face my enemy and the war is still ongoing. My tears flow… I sob wishing all these were nothing but a nightmare. However, I know it is painfully true and real.
During times when I can no longer contain my despair and hopelessness, I turn to reading to escape.
And when I find enough strength to plow forward again, I turn to endlessly researching and reading on our options.
To cut a long story short, we have completed our 2 weeks treatment and I am packing our bags to return home. How I wish that I have better news to share. I can even rejoice with no change. But this is not what it is.
Throughout her neutropenia (which would have rendered us with no treatments at home anyway) and even with the additional alternative therapy we are giving her, her stubborn mutated cells just wouldn’t give all of us any break at all. They continued to multiply and I found more tumors in her pelvic area. The only reason I can even write it now as though they are nothing but a matter of factual development is because I have once again cried my tears dry and knows that all the tears will bring me nowhere…
I do not know if I have come to terms with my reality or not but I am thankful to have my ever-supportive doctors, Dr Aung and Dr Chui by my side. They never judge, never discourage me. Instead, they are always there to hear my sobs, my cries, my nonsensical rambling and my insistent questioning on the next option. Most importantly, they always give me hope. I cannot even begin to tell you how important and how essential their very existences and support have been for me. They are the very definition of HEALERS.
This is not to say I am calling it quits. I honestly don’t know how to ever bring myself to stop searching for a way to save my only daughter’s precious life. Maybe I will. Maybe I won’t. I do not know.
However, my mind wouldn’t rest and I keep telling myself the next thing will be my miracle. Is this how positivity is supposed to work or is this me being in denial with my reality. The way I see it, no one needs to tell me that my baby is slowly fading away from me… but until the day when I can no longer physically protect her, my only instinct now is to continually protect her. I only wish that I could wrap her around my belly, and know that nothing will touch her unless they get through my belly first.
I have researched and found some more alternative therapies that I can do myself at home.
Africa is probably the only continent left that I have not ventured into. Where else can I go? Just where in this universe does the solution to the cure for our kids lay…
All of a sudden, this planet doesn’t seem big at all. America, England, China, Japan, South Korea and Russia… none of these places seem to have anything for our kids. How can it be? Our engineers have created ipad, iphone and even 3D Television sets, so it means that we have some really extremely smart people amongst us, isn’t it? How is it reasonable that we can continually create objects of wants and yet still have no cure for our bodies, the very existence of us…
I never once imagined that I would be thrust into this world, questioning so many things in life. The bureaucracies, the red tapes, the different cultures, the different systems, the idea of profiteering, the capability of human love and even the meaning of life itself. Even my sociology classes back during my university days did nothing of that effect to me. My world and my view of the world is forever changed.
What is considered a norm?
I wonder how I would have answered my professor now that my view of the world is oddly skewed to the extent I don’t even feel human anymore. Is that what growing up does to you?
I feel like an alien living in a planet called Earth. I am desperately trying to save a live I am more than willing to die for at any time. And yet, even my death will not cure her.
Strangely, everyone continues to move on. Everything continues to evolve. And the earth continues to rotate.
I am the only one left standing, immobile, incapacitated and unable to fit in. Do you ever feel the way I do now?
‘Life goes on’
Do you have any idea how repulsive that idea sounds to me right now?
I want to say that I hate it. Yes, I do. How can life still go on when it is obviously wrong? How can a mother outlive her kids? I don’t want life to go on. I don’t want time to heal the wound and I don’t want the pain to become more manageable. I want time to come to a complete stand still. And if its meant for me to feel the pain of loss of someone so dear, so precious, than why let the pain heal with time? Might as well let the pain grow and grow. Seriously, I am out of my mind.
I take it that it is time for me to end this before I drive everyone insane along with my imbalanced hormones and uncontrollable emotions.
This is actually an attempt at me trying to be neutral. Notice that I am not trying to be positive because frankly, I am incapable of anything to that extent at this very moment. All I want to do is cry my heart out, cry till my voice is hoarse and cry until the heaven is touched.
Quite obviously, I have failed miserably. I am not only unable to sound neutral but instead, I am so sore. Angry at what life has thrown at my innocent baby. Angry at myself for being useless and unable to save my baby’s life.
Hence, I have to apologise. I am sorry that I sound like a lunatic right now because this is exactly how I feel right now. I am sorry that I ruin your day with my pessimistic emotions because I really am finding it so hard to stay upbeat about life here.
Please forgive me.
And PLEASE PRAY. PLEASE PRAY FOR A MIRACLE FOR CHARMAINE. My innocent baby.
And please remember all the other innocent children fighting for their lives when they should be fighting for attention and toys.
Since when did life become this difficult…
PS: We are now inpatient at KKH for a nagging fever...