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

An additional day in our treasure chest!

Wednesday, July 20, 2011

Time to update again. :-) [A post written on 20th July but somehow didnt get published]

Can you sense my happiness?

Well, things have not been all rosy and easy. However, if we look at each day's tiny little blessings, then I would say that the feisty family is definitely blessed in more then one way. The simple fact that we got through last Friday's sudden turn of events with an indwelling urinal catheter is truly a miracle. Of course, it's not the perfect miracle that we have all been praying for but I will take it gladly.

I was a total mess on Friday. Rushing Char to Emergency and being told to head to the resuscitation room is scary beyond words. I was barely functioning because everyone was on high alert and Operating Theatre was fully prepped for a spinal cord decompression surgery. I didn't want to freak my princess and hence was trying my very best to act normal, look alive with a tears filled face. My white lie to char when she questioned my sadness and tears was: "I'm feeling so sick. My tummy is hurting and I feel nausea. That's why I am sad." Char said: "I'm sorry mom that you have to take care of me even when you are sick. Thank you mom. I promise I will take care of you next time when I'm old and you are sick. I will stay with you in the room when you take picture. I will feed you. I will also bath you and I will carry you to the toilet. I will wash your backside for you." Tears couldn't defy the gravity anymore.

When Char was wheeled into the MRI, I was sitting outside all by myself, crying non stop. I was desperately praying and cursing the damn cancer for being so cruel to my innocent child. I tried to prepare myself for a long night of surgery and recovery while being insane. I don't even know how to narrate to you. Another mom was just telling me the other day how she doesn't dare to tease others that they are behaving as if they are characters in a drama. Because the truth is our entire life is somewhat oddly similar to those TV dramas! With all the crazy scenarios you thought were ridiculous and only found in dramas to hype up the ratings are actually real life scenes in other people's lives!

You cannot even begin to imagine my fear when I saw our neurosurgeon Mr Seow walked out of MRI to inform me the 'good news' and the 'bad news'. Usually I'm in this 'semi-conscious' zone when I'm about to hear news of scans. It's the moment that could turn your world upside down - quite literally. And it's that simple. Just in a matter of a split second, you might find yourself dropping from heaven to hell or shooting from earth to heaven all in one second. Personally, for me to get through that is to remain 'semi- conscious' (for lack of a better word). It's like I have to be conscious enough to understand the news rationally and yet I cannot be too conscious because that will render my knees weak and I might slip into a coma there and then.

Anyway, the good news was no surgery was required because there was no spinal cord compression. However, the bad news was the tumor on her sacrum seemed to have grown and might be pressing on her nerves causing her bladder some sort of pressure such that she's unable to pee. I smiled for a few seconds there, hearing no surgery, no ICU stay and no numerous needles and tubies... But then I quickly asked, what's next? I had already called up our radiation oncologist, Dr Lee, informing him of the bladder issues before I even left home and so everyone was updated and aware of our latest situation. Radiation (as what I had anticipated) was the answer it seems.

We were discharged the next day on Saturday morning. But we were disappointed that we had to miss Char's Primary 1 School Open House. :-( I was probably the most upset. Jase was performing and we were all so excited to watch his performance. Attending Char Primary 1 Open House is a huge milestone that I had been looking forward too. Although our future is so uncertain, simply attending her Primary 1 Open House itself is one way I stay focused on the right path, the path to light and hope. The path to our miracle. To say I'm disappointed is an understatement. I felt like we had been thrown a huge boulder and I am crushed. It's a small insignificant non event really but somewhat I was irrational about it. Maybe because our lives now are filled with small insignificant non events that actually count towards our treasure chests.

I guess I lost my focus there for a bit. Instead of rejoicing in what I have, my sight was unfortunately set on what I've lost. It was silly. I'm glad that once we arrived home, I am reminded of how blessed we are to simply be home at that moment. And not some ICU bed, not anywhere away from home. :-)

Yeah! We are home!!! Everyday is an additional gift. Every morning, Char would get up as early as Jase and me so that she can send her brother to school. And every day, she will stress about what to prepare for her brother's lunch when we fetch Jase home from school. Last week, she made egg salad sandwiches and peanut butter sandwich daily. This week, we were unable to fetch Jase from school because we had to go hospitals daily for various appointments and she is actually rather upset. However, she has been sending Jase to school every single morning. As a mother, this is truly my greatest gift. :-)

Just a few days ago, I received an email from a donor saying that her friend who is recently diagnosed with cancer is inspired by my little Char. I'm happy to know that even during her difficult and tiring time, my Char is still able to give others encouragement and hope. Whoever you are, walking this journey is never easy. Let's fight on! It doesn't matter if you are an adult, a senior citizen or a young innocent child, no one should have to suffer and live like this. I know it's different being an adult cancer warrior from a child. I cannot even begin to imagine. Because with understanding comes more fear... At the end of the day, to me... We are all walking a painful journey which hopefully will end in the miracle we are all praying for.

On a side note, I do have a purpose in writing about the previous paragraph. After we went to NYC for treatment and coming in touch with so many of our fellow comrades in the pediatric cancer world, I'm somewhat influenced by the way information is shared online in such great details with treatment options, side effects and even simple descriptions of how one gets through a day of hell is so powerful. I've learnt more reading the blogs of all these kids then from doctors themselves. It's like a big responsive encyclopedia where you can ask and get answers from someone who has actually gone through the actual treatments and know first hand what to except. It's nothing like reading from medical journals. For awhile there, I found myself writing the same way as our friends in NY, sharing in great details Char treatment options and side effects, our entire thought process. However, as time passes... I somewhat figured that most of our supporters are not folks who would understand medical terms and specifically Neuroblastoma treatment options, which by the way is great news. We don't have that many Neuroblastoma kids in Singapore, thankfully. Hence, as time passes, I found myself getting back to my narrative writing, usually surrounding our roller coaster emotions and probably a large part of random ramblings.

Today, I feel somewhat inspired to share the experiences we have had walking this journey, specifically some of the observations I've made in the medical world. Some of the experiences may be particular to Singapore only but some of the experiences could probably be found in any medical world anywhere. For those of you who have been following us over the years, I'm sure you would remember some of my frustrations with the systems and regulations. Nonetheless, systems and regulations are not what I want to ramble on tonight.

Instead, I like to highlight to some of you who are unfortunate to be on this journey like us. The most important thing on this journey is to find yourself an oncologist that you can trust. I'm certain there are parents or adult patients who share a different perspective from mine and there's absolutely nothing wrong with it, the important thing is to find one who shares the same perspective as yourself. And by trust, I mean that. There are a lot of smart doctors out there but medical profession is more an art rather then science. It's all about judgement calls. You want someone who at the very least is supportive of your every decision. Please do not hesitate to seek a second opinion. There truly is nothing wrong with it. I don't know if it's a cultural issue or what. But I was one of them. I had sort of refused to seek a second opinion when Char was diagnosed. Part due to my ignorance, part inertia. It was too much to ask of me. My world just literally crashed and I was too 'dead' to seek another opinion. And I had been brought up to believe that KKH is THE BEST Children's hospital in Singapore. Why would I even want to seek elsewhere?

Now that I look back. The day that I went to NUH to seek a second opinion with Dr Aung was truly the best thing that can happen to Char and me. I honestly cannot imagine WHAT could have been if not for Dr Aung. I can safely say that without Dr Aung, my little girl probably wouldn't be here, walking her brother to school daily inspite of her own suffering and pain. And all it took was one 45mins consultation for me to make up my mind to switch under Dr Aung's care. That was truly the smartest thing I ever did my whole life.

I have no doubts at all that had it been other doctors treating my princess, with this progressive disease, many, if not all, would have tried one way or another to convince me that there isn't any hope and that I should be bringing her home and keeping her happy. No one would be able to tolerate my irritating demands, my constant pleads to bring in another non FDA approved drug, my annoying hounding. No one but our dear Dr Aung. Believe me, I am not exaggerating when I say that. Imagine the many requests I've put Dr Aung through: - Can we bring Char to Japan for any trials? Can I bring Char to China for alternative treatments? Can we apply to import in the non FDA approved drug Millennium? Can we try to bring in another non FDA approved drug Nifurtimox?

It's more then just tolerating my requests. I'm sure other doctors would at the very minimum listen to me rant and plead. But Dr Aung has actually agreed to my every plead. She asked, she wrote, she applied, she checked, she enquired and she made sure she tried as hard as I have.

So, my point is GET a second or third opinion. Get the one doctor you can trust to work together with you and not against you. It's not about being right or wrong. Because at some stage, there is no black or white, it's all grey and it's all about what you want. I want to fight for my child and to quote other parents, "Even if it's death, we will die fighting." As parents, somehow or rather, we will know when to stop... The crucial thing is not to have a doctor we depend on entirely to tell us to stop when we don't feel that the time to stop is here yet...

Of course, the reality is that there are smart doctors and there are compassionate doctors. There are practical doctors and there are doctors who would go the extra miles for you. Find the one you can entrust your life or your child's life onto.

Getting the right doctor is going to make ALL the difference between hope and despair. Just as everyone tells me to remain hopeful, it's crucial to have a supportive doctor to even have any hope to hold onto.

Secondly, while we should trust our doctors, it never hurts to learn more yourself. There are some smart doctors who never like parents like myself, the type who questions and is in need to understand as much as possible. Those are the doctors I can never work with. I need someone who can be patient to my questioning and my need to learn more.

Hmm, just my 2 cents worth. I hope that my sharing would help those on our journey in a small way.

Cyn mommy

NO Spinal Cord Compression

Friday, July 15, 2011

Dear all,

Good news - No spinal cord compression hence no surgery!

Bad news - tumor on sacrum/lower back grew and is pressing against bladder...

THANK YOU for all your prayers! It's saved us from another painful risky operation.
Keep them coming in...

Cyn mommy

Emergent MRI

Char woke up this morning unable to pee again... First sign of ANOTHER possible spinal cord compression... I don't know what to say... We just had the emergent decompression surgery barely a month ago right here and we were discharged for only a couple of weeks...

I just had to hold my own baby AGAIN and tell her that she has to have another urinal catherer inserted and she might have to have another major operation... And she has to go through MORE PAIN AGAIN.

Please pray that the scan will show NO spinal cord compression and that she will not need another surgery. Just how much does Heaven think I can bear, I really have NO IDEA. I know I will walk through fire if I have to, for my own child... BUT... This is truly too much to ask of my girl... It honestly hurts so much...

I don't even know how I dragged char and myself to the Emergency...

I can barely process and I can barely function... I'm on auto pilot mode again... This feels like a nightmare... A nightmare that's never-ending...

Looking at Charmaine... I don't even know HOW she does it... Just being her... Going through all these horrific ordeals time and again... And yet, she never ever wavers in her determination to want to get well... She is fighting so hard to live... She is fighting so hard for her mom and her brother to live...

Please give my baby a break and let her live... She deserves it... She deserves the chance to live more than I do... Take my life, make me suffer... Whatever... Just PLEASE give my poor child a break and let her live happily, normally and healthily!

Tomorrow, we were so excitedly preparing to go to her School's Primary 1 Open House... Jase is performing... Now everything is ruined... All thanks to you, cancer. :-(((((

Please pray and pray and pray for char to get well...

Thank you.

Cyn mommy

My one and only princess Char turns 6 TODAY!

Thursday, July 14, 2011

A Celebration of Life, Courage and Endless Love...

Happy Birthday to my one and only princess Char! Thank you for coming into my life this very day 6 years ago.

I am burned out from blogging hence I have been taking a long break away from this. I'm sorry.

Char is relatively okay. We had a wonderful birthday celebration on Sunday with the help from Sentosa Resort Worlds and 2 amazing friends of Char. Despite the pain, Char never failed to smile for everyone who turned up at her party.

The last few days have been a little more challenging because she has been experiencing more pain but my little girl doesn't complain easily and still wouldn't. I gotta read her facial expression to gauge her comfort level because she is pretty good at suffering in silence.

We are home and Jase went back to school. Char is unable to walk and on loads of morphine. In between all our insanity, we strive to have some normalcy and pretend that everything is OKAY!

I will hopefully find the strength and the patience to update more often... But I guess right now, escaping from blogging is like escaping from cancer since I don't want to face it...

PLEASE DON'T STOP PRAYING for my little princess. Argh, I'm tearing again! I honestly cannot type this darn blog without tearing! It's so tough! Forgive me when I don't update. :-(

I'm scared to hell but I continue to pretend life is normal and everything will be okay! We are just taking a longer then usual journey, walking a longer path then others but everything will be OKAY. It has to be, right?

Cyn mommy
Feisty Princess Charmaine. Design by Pocket