Praying for my miracle

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...