We are getting there soon! Positive thinking!

Thursday, April 22, 2010

Thank you all for the congrats but actually, we are not there yet.

I allowed myself to jump for joy for an hour yesterday but quickly calmed myself down. Its hard for to me to explain here which is why I decided not to update all with our latest news.

We do have a small piece of good news as in the spot on her sacrum seemed to have resolved. When I first heard the news from the doctor (who is not Dr Aung as she is on leave), I cried tears of happiness even though its just one spot that has so called 'clear'. The bigger spot on her right thigh is still there as I have mentioned previously...

I was so happy that I called Jolene and Charlene immediately BUT while on my way to meet Jolene in the taxi, I recalled our last scan result in March. Similarly, Dr Aung viewed the 'no change' as good news, whereas I was disappointed but reminded myself its nonetheless still a piece of good news compared to progression. So I learned to count my blessings and told myself to continue...

Little did I know, my world was rocked so violently barely a day later when MSKCC was informed of Charmaine's no change results and they immediately proposed to switch her chemo to ICE (for those who dont know, its a VERY VERY VERY HARSH chemo). I was shocked and devastated. I questioned and I cried. I just lost it there.

Hence this time around, I'm holding my horses. I'm happy of course but yet the mind is not entirely at peace. I simply dont know HOW New York is going to view this result, bearing in mind that the spot in her right thigh is still there. And New York takes a much more aggressive attitude towards treatment.

And of course, not forgetting the fact that the iodine (dye/contrast) used in Singapore is not the best quality one as compared to NY. I posed the question to the doctor after crying out in happiness: "Could the fact that we dont see the spot on her sacrum be due to the fact that the contrast used here is not of equivalent quality and hence the spot couldnt be detected?" SHE REPLIED: "YES, THERE IS A POSSIBILITY!"

Oh God...

As you can see, there are still alot of open ended questions here... So please allow me some time to finalise where we stand now and I promise to get back with some answers and hopefully, reasons for celebrations!

In the meantime, like what Jolene said, I am going to continue to rejoice in the simple things in life for the next few days until we start chemo next week.

I hope this finds you in happiness and contentment.

Love,
Cyn mommy

Life's Simple Pleasures

We're very happy today coz Charmaine's scan results shows that her sacrum is clear. Thank you everyone for your prayers. *Big Hugz*

For the next few days, Cyn mommy is not gonna be bothered about everything else till the next chemo on Monday and enjoy a normal family life.

Charmaine hasn't been going out for a long time and a simple trip like bringing kor kor to cut hair is a treat for her.





What are the simple things that made you happy today?

Praying for my miracle

Tuesday, April 20, 2010

Hi everyone,

Hmm, I prefer to start this on a happier note.

Good news:
1) Charmaine's abdominal pains and diarrehea have stopped!
2) Charmaine's appetite is improving, though sometimes she doesnt take much but at least she is constantly complaining of hunger.
3) Char looks much better too - her lips are no longer pale and white like 3 days ago.
4) Char is running a bit more and definitely regaining her energy!

And because of all that, we are happy and we are really enjoying our 'normal' lives. Other than the iodine and the scans these past 2 days, we eat, we sleep, we play, we dance and we do everything the way we are used to - a family of 3! And even better, they have por por and kong kong and other kor kor, jie jie to be their playmates as well so they couldnt be happier!

Some friends have already started to message me for results of the scans...

Sigh, the last 2 days have been nerve wrecking for me literally! The scans in SGH usually take more than an hour and I get to stay right beside her throughout the entire scan. You know, now I think I understand WHY parents shouldnt be in the scan room as all the machines spin and move with all the computer screens staring right in front of you, watching those images blink and blink , tracing the outline of whatever it is scanning. On top of safety issues, I think a bigger reason is because parents could actually die of a heart attack or maybe suffer a stroke instantenously right in that scan room, beside your own child!

I swear I nearly died in that SPECT/CT room yesterday! I've been to ultrasound rooms in KK whereby I could literally feel my heart stop beating but its nothing compared to sitting in that SPECT/CT room for that MIBG scan. I am not very knowledgable in terms of reading MIBG scans. All I know is that you dont want to see any spots (brightly lit up areas) on the films. Quite simply, those lit up spots which they termed it medically as 'increase uptake" of the dye/contrast is areas where the neuroblastoma cells are at. So yes, you want no spots and that means NED (NO Evidence of Disease) which is the best news for us.

I read quite a fair bit of websites of different onco kids mostly in America to try and understand more about the treatment options available, to understand how they cope and of course, most importantly to draw motivation and strength from the success stories. And one of the biggest nightmares no one wants to see on the MIBG scans is a brightly lit up film which parents usually describe as "light up like a christmas tree"... thats the basis idea of how a layman tries to interpret the scan results...

For the first 15mins, yesterday, I stared at the computer screen with tiny dots blinking the whole time... almost like a picture of the skies filled with many many hundreds or millions of stars... I panic. I couldnt breathe. The last time we did this scan was March last year and I didnt know a thing about what this scan is all about so my entire mind was only filled with anxiety, looking at that machine move and worrying that Char might wake up halfway... But this time, I have a rough idea of what to look out for and of course, many worse imaginations and assumptions... IT WAS HORRIBLE! The whole time, the words "light up like a christmas tree" kept flashing at the back of my mind and I was just thinking the worst and I started to curse at myself. I kept praying, chanting and distract my mind with whatever rubbish my barely working brain could come up with to no avail. It was so painful and I was going mad... I couldnt cry. At some point, I got really frustrated at myself. But no matter how I try, I couldnt... I just couldnt rid my mind of bad thoughts. I squeezed my eyes tightly shut but it was never long enough! My eyelids wouldnt listen to me and they would always open less than a few minutes and I would see those images again... It was so bad I wish I could gorge out my eyeballs literally so I wouldnt be able to see those 'stars' blinking in front of me. And than it got worse as the machine moved from head to abdominal... when I saw that bladder... my thoughts strayed again...

I was just so relieved when it was finally over...

Today, I had to turn my back towards the computer. I stood at one corner and started stretching for the full 1hour. Time was much more bearable. But I still managed to catch a glimpse every now and than... of the head, of the abdominal, of the pelvic, of the legs...

And I saw what I didnt wanted to see... I couldnt see the spot on her right femur yesterday but I could clearly see it today... my heart sank... her bladder is also brightly lit up but its because of the contrast that was injected... her sacrum is hidden by the bladder so I couldnt tell if the spot on her sacrum is gone... even the doctor couldnt tell... he ordered another scan; SPECT/CT to be done so that we have a clearer picture especially in the sacrum thats obstructed by the bladder... Hence, we had to do another 30mins today...

I dont have the reports... but as far as my eye could see... the spot on her right thigh is still there and it SUCKS. So now, I can only pray that even though the spot is still there, at least it has decreased in size... (but comparison is not going to be easy because the previous scan done in Jan was done in MSKCC with a better quality dye and a different machine)... and I would already be very thankful... I dont wish to speculate so thats all I can share today...

We will be going to KKH tmr for a routine finger prick for blood counts and check up but Dr Aung is not around... So most probably we wont know the finalized results either...

Once I have any news, I will be sure to update everyone again...

In the meantime, I just dont wish to think about it for now. Even typing about it now makes the situation depressing for me. Thinking causes me to lose my bodily functioning... and in turn affects everyone around me. So I will not think and I will join Jase and Charmaine for the next few days and be a big kid. I will eat, play and sleep. Just for the next few days...

But please do continue to pray for my Charmaine and for my family... All I want is a normal life...

With this, I shall end by wishing everyone good health and goodnight.

With love and hope,
Cyn mommy

~praying for my miracle...

Mommy is happy to be home too~ Scanxiety AGAIN...

Sunday, April 18, 2010

Hi everyone, (Has it been awhile since I remember my manners and said Hi?)

Pardon me because I have been updating through my phone these days and usually I just want to do a quick update and get back to whatever I was doing. But right now, I am typing from my laptop, its nice for a change.

Both Jase and Char are busy colouring now as I am typing. Like any other siblings, they are having a little disagreement over the colors! Haha... ITS SO GOOD TO BE HOME!!! Life actually feels normal. Time has been whizzing past us since we arrived home from NYC and we have been inpatient more often than what we are used to, and undoubtedly, it has taken a toil on our mental being. However, the last 2 days has been a refreshing break for us as a family. We really needed this and I am so grateful that we have these couple of days to recharge!

Charmaine is still experiencing abdominal pains and diarrehea daily but the frequency is thankfully decreasing. We had a couple of really tough days last week and I pray that the side effects is finally starting to wear off and Charmaine is able to actually have a few good NORMAL days this coming week before we start our cycle #4 on 26th April.

Thank you to all our friends who suggested ways to cope with Char abdominal pains. One of our warrier family from NUH even called me up and gave me their hot pack to help Char. Thank you Pamela!

SCANXIETY WEEK
Charmaine is scheduled for her MIBG scan on Monday and Tuesday (19th and 20th April)... We had to go KKH yesterday to set a plug on her hand before heading down to SGH to inject the contrast. It was another traumatising start to the day because I had to apply emla on Charmaine's hands and of course, she freaked out totally. Cried so hard. Thankfully, she managed to calm herself after crying non stop for abt half an hour. One of Charmaine's greatest strength is her ability to calm herself down after crying her heart out. And its all because of her wonderful strength that I am able to survive through each procedure and each ordeal. Once again, she displayed her amazing strength yesterday and didnt resist at all when I picked her up to leave the house. She stayed calm throughout our journey to KKH and could even tell me that her right hand should be poked instead because there's more emla and it would be less painful! I am just in awe. So many times, I silently ask myself, "Would I be able to even have half the strength she has to knowingly walk forth towards pain and fear so many times and yet still continue to smile at the simplest things?" My answer to myself is a NO. Frankly, I am very certain I wouldnt even be half as brave as she is because I am a person who rather not know. To me, ignorance is bliss. But yet, I have to tell my baby girl to not be afraid so many times... It makes me feel like I am some sort of a hypocritical monster myself... Because almost every time I tell her not to be afraid, my heart is filled with so much fear and pain.

Another challenge which made me rather stressed eventually turned out to be such a breeze just BECAUSE SHE IS CHARMAINE! Children who has to do a MIBG scan are prescribed with Lugol's Iodine (Yes, its that yellow/purple iodine). It will protect the kids' thyroid during the scan. The kids have to swallow Iodine for 5 days, 3 times a day in Singapore. The first and only time Charmaine swallowed the Iodine was sometime last year when she was first diagnosed in March. It tastes really horrible and it leaves a bitter aftertaste on our tongues for a long time.... so you can imagine why these kids really dread drinking it. The last time, Char really didnt like it... and it makes her lose even more appetite. Hence this round, I was very stressed. Charmaine's appetite is already not too good and with all the diarrehea ongoing the last week, I honestly is concern.

BUT it turned out that I totally underestimated Charmaine's tolerance once more! The first dose was on Friday and though she was really turned off by the sight and smell, it only took her about 15mins and she swallowed that 0.15ml in one gulp and no fuss! A few more mouthful of water and that was it!!! Charmaine, your mother, me is truly ashamed of myself! To think that I am actually so afraid of swallowing pills and yet you swallow every syringe of medication without asking mommy why, despite the horrible taste. The only few exceptions were: "I dont like this medicine because its not nice" but yet you would still dutifully swallow the next mouthful I put into your mouth... I love you Char and I am so proud of you. Your determination to want to get well is time and again displayed in all your simple actions and with all the aunties, uncles, kor kors and jie jies praying for us, we will get there again.

My emotions are all mixed and tangled in a mess now. I am happy, truly happy to be at home watching TV with both Jase and Charmaine by my side. Simple things like these that most people get to do it daily and may not realise how priceless it is until it becomes a treasured activity... like it is for us now... There are many families still in hospital fighting their battles, who dont get a chance to be with their family like I do tonight as I am typing this...

The other bit of my brain is filled with anxiety, worries and just absolute fear. Our lives in the onco world is easily uplifted to cloud nine with a phone call or thrown down to the deepest, darkest abyss with just one scan... Just one scan away between heaven or hell literally... One moment, you are happily rejoicing and the next, you may be uprooted from your life totally... Such is life for us... It really makes me question why was I even anxious about getting my O or A levels results when I was younger... its not right to compare but seriously... dont you just wonder sometimes...

On a side note, if you happen to be anxious over a test or exam result, please remember that this result doesnt reflect you in anyway at all. Even if you happen to be the one that is always in the bottom of the class, it still doesnt mean that your future is a solid indication of what you are now. I'm not that experienced but in my 30 years of life, those who used to come up tops during my school years werent always the ones that are the most successful now. Those who used to fare badly in school arent always the ones struggling now either... so take heart, as long as you have the right attitude towards life, the rainbow will be waiting for you at the other end of the bridge.

I digressed again... Sorry, just my way of trying to not think about scanxiety for a couple of minutes... We have to be at the hospital by 0730hrs tmr so I shall end it here...

Before I sign off, I would like to just plead with you to say an extra one or two (if its not too much to ask) prayer for Charmaine for the next few days. PLEASE HELP ME PRAY FOR CLEAN SCANS FOR CHARMAINE. We honestly need it. I need it... THANK YOU.

Dear God, PLEASE PLEASE PLEASE GIVE US A MIRACLE. PLEASE let this chemo WORK MIRACULOUSLY and that ALL HER CANCER CELLS are miraculously KILLED even way before I typed this. PLEASE HEAL CHARMAINE now so she is healthy and happy and is able to be a normal child...

Love,
Cyn mommy

I love to be home with Jasejase - Charmaine

A night of fun with Lightsticks.
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Jase is getting matured these days. Whenever I sneak off a few minutes from work to call, he understands I have to hang up the phone when i reach my destination, or when my meeting starts. After the New York experience, he appreciates school, knowledge and homework. this day he said," charlene jiejie, i cant talk long today because I have to learn my spelling tmr."
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And yet, never fails to amaze me with his love for sister
"U must remember to buy a new sword for meimei ok?"
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with such a brother doting on her, it is no wonder Charmaine sms-es over and said "I love to be home with Jasejase"

And I am sure, that smile of hers, was taken when her mind is full of cheekiness and love from her mom and brother.
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Some photos of her in hospital:
She and her puzzle:

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Charmaine, the future Doctor? Nope. She wants to be a nurse!


Have a blessed Sunday,
Love Charlene
 
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