An entry wrote on 22nd April 2011

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…

Love,
Cyn mommy

PS: We are now inpatient at KKH for a nagging fever...

Why not continue 3F8

A blogger commented earlier, why we did not continue 3F8.

Based on their requirement, Charmaine needs to be in a stable condition. Unfortunately, it was not on our side.

Love, Charlene

Updates on Charmaine

Sorry for this lack of updates as things have been turning on the wrong direction for them.

They are still fighting, and please keep praying.

April 17, 10:37pm
Cynthia: I am suddenly out of steam :-( the 2 new lumps in her abdominal are freaking me out totally. They are HUGE. I was okay whole day since yday, but now, I cant stop crying... i dont think I can handle any of this.. I really wish I am the one suffering..

This came in last night, and please keep them safe.

Thanks everyone for their concerns.

Love, Charlene

Chemo #19 and inpatient with fever

Hi everyone,

Last week, we started Chemo #19 which is a new protocol but basically similar drugs. We switched Avastin into Vincristine and converted Irinotecan into Oral which was supposed to allow us to do it at home but alas, we had to have our fever so back inpatient since Thursday night. Extremely high fevers above 39.5 degrees. We finally finished our chemo yesterday but our fever spiked again yesterday morning so we did another blood culture which may mean another 48hrs stay...

Jase started his first day at LAA on Saturday and came straight to hospital for the weekend. We had a wonderful time racing on our self improvised car track on Sat but Sunday, Char was feeling more crappy and hence Jase just spent his time watching TV programs besides Char.

We are due to start another 5 days of chemo on Wednesday. Please pray that it will be uneventful and that we can do it at home with no surprises.

Thank you all.

Love,
Cyn mommy

Staying on course

I'm thinking and wondering how to begin this post...

As I'm typing this right now, both Jase and Char are happily cycling around me at our void deck. It really is so simple to be happy in life. A walk in the park used to sound like a really dry and boring idea to me. Nothing to excite me, nothing to thrill me, nothing fanciful and just nothing close to interesting. However, to this little precious ones, a 'boring' park brings them such tremendous amount of joy it is infectious. And I learn. All they want is a place to run, cycle abit and they are happy! I am learning from them everyday to see the world through their eyes and I rediscover what I have been missing all along. I genuinely hope that as both my kiddos grow up daily, the world will not change or influence the way they seek happiness.

So here we are, despite the madness and uncertainty surrounding us, we continue to have fun and live life to the max. I read a comment left by one of our readers a few days back, having to cut down on returning to read our updates because it just got too depressing. I sincerely apologize. I know you will probably come back to say that I don't need to but I feel like I want to. :-)

To a large extent, I rely heavily on being negative on this site. It helps me to function. It allows me to get some of my desperation, my fears, my anger out of my system. I don't openly discuss any of Charmaine's progress with my parents because it does nothing but worries them. At their age, I figured they could do with less of my burden. All my friends around me have their own fair share of challenges and quite frankly, most of whatever I have to say may not make much of a sense to most people unless you are living in my world. Most of what I want to discuss about may not even make much sense to people actually in the medical world. As such, this has become my official crying ground. And the truth is I have been crying too much in the last few months. I started off the year promising myself that I will continue to move forth and fight harder than I've ever fought. It has not only gotten extremely hard and we are running out of treatment options. Despite everything we have done and tried, her cancer is still not stable and is still spreading.

Obviously, most of the times I am just a total nervous wreck. And when I get the results that I totally dread, I would lose control of my entire body. I would be in this 'calm before the storm' stage at the hospital, seemingly OK and able to talk, find our way home. And than the storm comes. I would for no reason cry and cry buckets till I puke and puke. And than I would get a vicious headache. And than I would have to pop panadols, force myself to sleep it off. The next day, I will wake up and continue to try and stay on our course. It's a miracle even to myself. I am thankful to my body for being able to re-boot itself time and again.

Anyhow, I wanted to let you know that while I am crying out desperately for a miracle, we do still try to function as normally as possible. And as soon as I pick myself up, I know its all about having fun. Hence, as and when Charmaine feels well enough, along with some of my most precious friends, we have activities lined up for Charmaine and Jase. Be it a simple cycling trip around the neighbourhood, a short trip to the beach or an impromptu last minute decision to the Night Safari.

We played, laughed and live. Both Jase and Charmaine had so much fun over the last few days at the beach, at the Safari and just cycling around. It was very touching for as a mother to watch. To see their smiles, to hear their laughters and to feel their happiness is simple priceless!

Needless to say, some days are easier while some days are harder. On our easy days, we try to make the best out of them and pack them with fun and laughters, cherishing every moment we have with each other. On days when the going gets tough, we cope and deal with the situation, and quietly pray for relief.

I am happy and deeply grateful for our moments together but each day, the fear of losing my little girl is always at the back of my mind. I don't have the courage to stop treatment and be at peace with whatever comes. I need to keep searching for the next option, the next thing to try and that's how I cope and function. Alot of times, I don't know if I'm right. Its strange because I am not a person who keeps trying to change something not within my control. I am happy go lucky in all things but this.

Charmaine is still so full of life and excited about all the big dreams she can fulfil when she grows up. While I am painfully aware of our situation, that this cancer is slowly taking over my baby's body, I will continue to do whatever I can, pray as hard as I could, hold on to whatever little hope I can find, keep the faith and look for my miracle.

Scans Updates~~~
We completed our MIBG scan and MRI of her both legs last Tuesday. Her MIBG scan is once again showing that she is almost 'clean'. OH HOW I HATE THE MIBG SCAN IN SINGAPORE! As for her MRI of legs, I am not too certain. Dr Aung is waiting for another Radiologist to read her scans. But her preliminary reports by another radiologist is basically saying that some parts are stable, some parts are not and he thought he saw another bloody lymph node growth!?!?! That is THE KILLER for me that. The result which gave me my 24hrs of complete breakdown.

That was last week.

Basically her LDH (a blood test, a tumor marker) that New York relies heavily on tracking the NB growth has been accelerating over the last 3 months and now it has gotten to a stage where I find myself breathless and possibly dying from heart attack just hearing the numbers. A normal person's level is anything below 240. My little precious girl's LDH was at 734 two weeks ago. In NYC, anything above 300 would have set off some major alarms but its not an common tumor marker used in Singapore. Our many months stay in NYC has resulted in me being influenced with their ways of treatment to a certain extent. So while Dr Aung is not overly concerned with her numbers, I am closing to paranoia. We discussed closely and because of her recent bouts of nausea and vomiting, dizzy spells, we decided that we should order a MRI of her brain to check the situation better.

And the MRI was squeezed in this morning. We spent the entire morning from 8am till 2pm at KKH, for an Ultrasound scan on her thigh to check that suspicious lymph node and MRI of her brain. Dr Aung is currently out of town so I wont hear from her until she is back.

Its been 2 weeks since we last checked her blood counts hence Dr Aung decided that we should do a 'finger prick' today. It was agreed that we wouldnt see any doctor unless I gotten alarming results from her finger prick. Guess what? It definitely ALARMED me. I wasnt expecting her to have no immunity after all its been almost 3 weeks since we last did her chemo. BUT SHE IS INDEED NEUTROPENIC. :-( And her platelets are at a shocking low too. I am definitely feeling sick to my stomach again and is trying my very best to hold it together.

The reason for my shock is unpleasant. Charmaine hasnt had her bone marrow biopsies done since September last year. I am watching it closely because in NY, they do bone marrow biopsies regularly, within every 3months. With Charmaine's LDH being so extremely high and last week's scans not picking up conclusively, I am freaking out and very very worried. I told Dr Aung about my fears and she said that she will only start to worry if her counts are dropping for no reasonable reasons. AND WALA. WE HAVE LOW COUNTS TODAY!!! ARGH.

I know that our last trial has most probably not worked on her and its devastating to me. We are working on our next option. One of which requires going through the Ethics Board for approval as its a non approved drug unavailable in Singapore. It will take weeks before we even have an answer. Please pray with me for another door to be opened to us. Please pray that we will be able to find another treatment for Charmaine which will work very well in reducing her disease to a minimal and keeping her stable for as long as possible. Time is obviously never on our side. Hence, please also pray that everything will eventually work out well.

I need to have a clear head to work out our options and decide on how best to move forth. With each passing day, I feel that my feet is heavier and it gets increasingly harder to even take a small step forward. However, time wont come to stand still even if I try, and the only way is forward.

With your prayers, blessings, love and tears, I will continue to push through and take whatever baby steps I can.

THANK YOU for loving us, for crying with us and for praying with us.

Love,
Cyn mommy