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