29th July 2011 ~ Its Today!

Friday, July 29, 2011

Hi everyone,

I always want to apologise whenver I lack in updates, not because I feel oblidged to do so, nor is it due to a fault of anybody. Its simply because I want to. I am also a follower in many other warrior kids' blogs and I know firsthand what is it like to be waiting anxiously for updates of a someone you may have never met before but yet care so deeply for. Every update, be it just a one liner on Facebook Status or a picture can make or break my day. And like most of you out here following Charmaine's updates, I worry, I fret, and I curse on bad days. I rejoice, I hope and I sing praises on a good day. Thank you to everyone of you, still following our little princess, still believing in hope, and most importantly, still praying fervently for our miracle.

There are people out there who does a great job differentiating between work and family, colleagues and friends. I, for one, do not. In fact, rarely will you hear me mention colleagues. Everyone is a friend. A friend whom I worked with, a friend whom I studied with, etc... This is me. There are people out there who is able to view death as a natural event in life, all part and parcel of what living is all about. Some even view death as a part of some greater plan. I have nothing against these admirable folks. Its a great strength to possess. Nonetheless, its not a strength I own...

I do not know if I will feel the same degree of sorrow or hurt and anger towards an elderly passing. Both my grand-dads have passed on long before I understood death. When both my grandmas passed on, I was also a young teen who probably enjoys the thrill of near-death experiences, more then understanding the meaning of life and death. Honestly, I dont even know how will I feel should my parents pass on...

However, I have felt so much pain, so much hurt and so much sorrow for the passing of all these innocent little kids around me... Kids that I probably know for a few months, or in some cases, kids that I barely even know well. Strangely, with each additional lost child, a bit of my heart and soul is ripped apart. It leaves a gaping hole and when the hole mends, the scar remains. My life is never the same anymore.

Just what is it with these little innocent kids that can leave such a lasting impact in one's life is beyond me. Is it the painful journey that they have to endure, suffer, go through and yet end up with a family forever lost. Or, is it their bravery, courage and strength in the face of such adversity? Is it their ever-ready smiles or passion for life? Why do I hurt so much even when its not my own? I cannot even begin to comprehend a mother's desperation and pain when trying to hold on to her own child's life...

At the end of the day, what matters most is not how hard we have fought or how much we have tried... What truly matters is they are no longer by our side...

Lately, I've been feeling emotional and heart-broken. Heart-broken for our friend in America. (www.caringbridge.org/visit/ethanjostad) The Jostad family are very close to us when we were in NYC and Ethan has been clear of cancer only a few months back... Life was just about to return to the normalcy they once had, and yet within a month, everything changed. And it is changing at a devastating pace. :-( Please keep Ethan in your prayers as you would for Charmaine.

Last week, I was actually pretty excited over the approval we have gotten for a new drug we are trying to bring in for Charmaine. It is one of those little things that I have been working on, bugging different departments, different ministries to expediate for my little girl. I was so relieved when I finally heard from the pharmacist last Wednesday that Bayer agreed to sell us the drug and it was pending HSA approval. To say that I am anxious seem to be an understatement. Especially with our last episode of her bladder not functioning. Every minute, and every delay count. These days, I always found myself laughing sadly at my own new definition of many phrases. "Every minute count" is one of those examples. Usually, every minute count towards thousands or millions of dollars in a business setting. But now, those millions of dollars pale in freaky comparison to a life, a precious life. And it is just unfortunate that not everyone in the various levels of a system truly understands the urgency of time.

~~~ Medical Front ~~~
Charmaine is completing her last day of radiation to her pelvic region on Tuesday and hopefully, the radiation is enough to shrink all the tumors in her pelvic region and sacrum. Please pray that her bladder didnt suffer any permanent damage and that she is able to urinate on her own again so we can pull out her urinal catheter! Charmaine is on an incredibly high amount of steroids which in turn causes her to have hunger prangs constantly. And because of her steroids, she also has fluid retention and causes her to sort of swell up. Many even thought she has gained weight and looked better. Well, I am glad that she does look better on the exterior, despite the steriods. Lets just pray and will her body to be even better on the interior! I've learned quite a fair bit about steriods lately! On top of causing constant hunger prangs, swelling of cheeks and abdomen, one of the nastier side effects has to be mood swings! Fortunately, compared to what I've heard about other kids, my little Char is being such a sweetheart even when under the manipulation of Dexa. Her so-called worse behaviour is the 'stoned face', or rather, lack of response and expression. But other then that, I know Char must be putting up a huge resistance against the Dexa devils from over-taking her happiness!

The new drug has ARRIVED in KKH. YEAH!
"On 21st July, my FB status read:-
I AM SO HAPPY!!! After going through numerous obstacles, we finally got the approval for us to import the trial drug - Nifurtimox for Char to start treatment in SGP!!! Michigan doesn't respond to me - no loss. I bring Michigan to us!!! YEAH! Praying that this is the miracle we have been hoping for! Let this drug work the miracles on Char!!! NO MORE CANCER!!!

This is the trial that we were supposed to go to Michigan to participate in. Its a Phase 2 trial now but it does have quite a fair bit of really nasty side effects. I am not looking forward to it BUT I have to remain focused on our one and only goal - to get Char stable. Hence, I can only brace myself for the challenges ahead, hope for the best, pray for the miracle!

Thank you everyone! Sending everyone lots of love and wishing you all good health and happiness.

Cyn mommy


stacey said...

Hi Cyn, It's good you remain hopeful and continue to do your very best. This is the energy you want to pass to Char, positive energy. If you receive messages that are not helpful, or someone said something hurtful, don't listen to them. We don't go to a salad bar and choose the food that we don't eat. We pick the ones we like and ignore the rest. So is life. If you pay attention to negativity, you spend less time focus on wellness. So focus on wellness despite your temporary reality says something else. Healing can only takes place when there is no resistance. One can't hope for wellness when the mind is filled with negative thoughts. We act on our thoughts, and "see" according to what we believe. Our bodies feel our thoughts and respond to those messages positively or negatively. So feed Char with love, joy, hope while looking for cure. Learn to ignore your reality. You are not in deny when you do this, on the contrary you are helping Char to survive the disease. She sees what you see. You want her to see hope. Talk to mothers/parents whose children are doing well or who continue to survive against all odds. Find inspirations from those who are inspiring. You want to learn from the very best. Focus on what is best for you and Char. You must prioritize what is important for Char because she is still alive. Learn to accept the fact that life is unpredictable at times, that is why you need to stay ahead of the game. For those little ones who have gone to where they came from, send them prayers. Their journey on earth has ended. But for those who remains on earth and hope to regain their health, they are the ones who matter most. Take care and God bless.

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