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.

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!

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...

Cyn mommy

I love to be home with Jasejase - Charmaine

A night of fun with Lightsticks.
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."
And yet, never fails to amaze me with his love for sister
"U must remember to buy a new sword for meimei ok?"
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.
Some photos of her in hospital:
She and her puzzle:


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

Have a blessed Sunday,
Love Charlene

Tough time with side effects

Friday, April 16, 2010

Char is having a hard time with abdominal pains and diarrehea the last few days...
Diarrehea seemed to finally stop yesterday but her tummy pain got worse instead. Yesterday, she was crying in pain for at least 20mins and only fell asleep 45mins later after panadol.

It was very very difficult and painful watching her curl and scream and yet, nothing much I can do to alleviate her sufferings. It makes her determined mind waver... It makes you question why...

I can pray that her pain will subside totally and that all her suffering are worth it. I hope all her cancer cells are totally killed and

Please pray for us... Pray that charmaine's pain will subside and that she is healed totally on earth...
Thank you.


Too many happenings...

Tuesday, April 13, 2010

I dont even know how to begin but lets just start by saying, WE COMPLETED CHEMO AND ARE HOME TODAY!

Charmaine's fever took a sharp climb on thursday morning to over 39. But it also subsided on Thursday after the docs switched her antibiotics to a stronger type - maropenem. More blood cultures were done and thankfully all were negative.

I was definitely worried over the postponement of her chemo constantly because of her persistent fever. Highlighted my concern to Dr Aung and requested for them to start her chemo despite her fever. Once again, we are on the same level of understanding and she started the chemo immediately along with the antibiotics. Fever came down miraculously!

Dr Aung dropped by everyday when we are inpatient and on Friday, her first words were: "Not sure if its the antibiotics or the chemo". We happened to be in this situation a couple of times and one can only guess whether its the antibioics or the chemo that worked!

And hopefully, this is THE WEAPON that will totally destroy whatever cancer cells still lurking in her body!

A little piece of good news~
In NYC, they have a practice which will be a culture shock to any Onco family from Singapore - Us included! Patients are allowed to go back home with their needle still in their port. I was mortified the first time we stepped into MSKCC for our first appt and was asked if we want to leave "IT" in or not. It took awhile for me to register the "IT" but once I realised she was referring to the NEEDLE, I was freaked. I asked in shock, "Is it safe? Is it even possible? How do I take care of it?" After all her answers, I said, "Please pull IT out". But Char was really traumatised since it was our first time in MSKCC and seeing how terrified she was, the nurse suggested to leave it in instead. I obliged skeptically. And within minutes, we were called back into the procedure room to have more blood drawn. WOW - that was one huge lucky call. Had we pulled it out earlier, she would have to be poked again! Anyway, we went back to RMDH with the needle and it was the first time I realised HOW convenient and HOW much more comfort it provided to the child! For the next few days, we had scans lined up daily and they just easily hooked her gripple needle up whenever they need to. No fuss, no struggling, no tears, and most importantly, NO TRAUMA! We quickly got adjusted into our new found practice and Charmaine is actually so comfortable with it that she kept commenting: "I wish they can be like New York so I can go back home with my needle and doesnt need to stay in the hospital for so long." My baby girl didnt understand that she still has to stay inpatient even if they allowed us to go back with the gripple needle whenever she has fever. But of course, it would make a huge difference when it comes to doing chemo that runs for a couple of hours over a duration of a number of days or a week! Because it would potentially mean that we dont have to stay inpatient for 5 days and yet we come can daily for infusion without having to be poked every single day!

WE ACHIEVED THIS OVER THE WEEKEND! Dr Aung believe strongly in this change and fought hard for us. And I overheard that there were also nurses who supported this first crucial step. And we did it! We all did it! Charmaine is the first patient to be allowed to go home with her gripple needle. Frankly, Charmaine handled it with much ease and I should say, happiness! After all, its not anything new for her since we have done this countless times in NYC. I'm not sure if the rules are entirely changed, I believe not so and I can understand their concerns. Its a first for many of the nurses since many have not been exposed to such practice and they were so sweet to call up and check upon Charmaine when we were home for that couple of hours. But I am glad that we have all taken this first step. Its one small step but it means a huge quality of life for these onco kids. Imagine not having to be inpatient all the time. Imagine not having to be poked all the time. Charmaine couldnt be happier. She is so thrilled but I had to caution her that she is the first patient they allowed home with her gripple needle in Singapore and that she should take good care of it so that other kids will be able to go home with their needles like her in future. She was rather proud about that and I am just glad to let her have her little moment of pride amongst all the pain that she has experienced.

A sudden loud tearful cry of pain on her left thigh on Saturday...
So we came home for a couple of hours on Saturday (home leave) because of some administrative procedures that didnt allow us to be discharged fully until Sunday. And we werent planning to return until bed time at 10pm. Charmaine was jumping for joy the moment we stepped into our house on Sat and played the whole evening with Jase.

At 7:30pm, Charmaine suddenly started crying and kept bending her left leg, complaining: "Mommy, my leg pain!!! Mommy, my leg very painful!" I was taken by surprise totally! Went into a panick mode, so did my mom. My mom even started crying seeing Char cry non stop. My tears started to gush out too. I was at a loss and I was so scared. Its something new and its bad. I prayed desperately that its nothing serious and it will go off! 15mins later, she was still crying and I decided to give her paracetamol and just threw everything into my bag, to rush back into KKH. Within 10mins of the panadol, she stopped crying and the pain just miraculously went off.

By the time we reached KKH, she could even dance to the Madagascar movie on her bed! But my guards were not let loosen yet. I couldnt. I remembered the last time she experienced pain suddenly on her right knee which progressed to total immobility and infections and swelling and all... within a couple of days... frankly, it just sucked. I was paranoid, actually tried to get the HO to call Dr Aung and kept questioning if we need to start Char on her bone infection antibiotics. I admit I was just imagining the worse and wanted to take extreme precautions. Char's dancing and laughters calmed my nerves eventually. I did email Dr Aung and updated her and of course acknowledged my paranoia.

And because of that pain episode on Saturday night, I decided to keep our bed on Sunday and requested home leave instead of discharge. Just in case. I didnt want to be going to A&E and waiting for hours before getting a bed or anything like that. Come Sunday, we returned to KKH at about 10pm and guess what, the entire KKH's aircon broke down! It was terrible, the nurses were perspiring and and one can only imagine the kids doing their BMT in Isolation rooms! Not to mention the mothers to be in the labour wards!

And since it was already bed time, I felt safe to head back home for the night before returning the next morning for our last day of chemo #3.

A Heartbroken Sunday
Sunday was a heartbroken day for me... I woke up to a message sent by Charlene and was shocked to see it. I was devastated and immediately started pouring. As much as I tried to keep my volume down, I guess it was still loud enough for the other families in the room to hear it. Ended up huddling together in tears.

Our closest family in NYC, another family with a daughter battling cancer, the only other Asian family in the whole of Ronald MacDonald House (Taiwanese), our neighbours living a few rooms away… Her 18 years old daughter passed on Saturday NY time. Both Charlene and Jolene met with them while they were in NYC and we were all just too shocked and too consumed by the sadness. Even though we knew she was battling cancer, its still very hard to accept the reality as it is.

For the entire Sunday, I couldn’t think straight. Her mom took care of me when I was ill. She calmed my nerves when Charmaine was bleeding profusely from her nose. She hug me so tightly when I received news of Charmaine’s HAMA and Charmaine’s relapse. She helped me packed all our belongings. She always watched over me and my 2 kids despite her own battle. Both Jase and Charmaine love them so much and see them as family! Whenever we sat down for meals together, Jase would sing and shout: “Yeah, we are YI JIA REN!” They were one of our closest friends and I depended on them a lot physically and mentally. I still can’t stop crying, typing this…

I don’t know HOW to return to NYC without my other family there. Already, I have been so worried with Charmaine’s heavily battled body. This time around, we had so many more fevers, it just seems harder and tougher for her to bounce back… her colors still look pale… I don’t dare to think… Most importantly, the kids are looking forward to returning to their other family and now… they are not going to be there anymore… I didn’t mention anything to them… I don’t know what to say…

Its too painful just thinking about them now… Another day, I will share with you how this 18th year old girl has taught me so much…


Little Charmaine & Cyn Mommy back home

Just a quick update for all who have been following.

Mum and babe are finally back home. Biopsy result showed an all clear but as usual, nothing is 100% in the medical world and there are cancer cells in Charmaine's left thigh which may have come (or is it the other way round?) from the bone marrow.

I believe cyn mommy will be elaborating more on what happened the few days she didn't update here.


Charmaine and her Light Sticks

Saturday, April 10, 2010

It was just light sticks. Yet the science behind it amazes Jase and Charmaine so much that the fun was just never enough. Having promised Charmaine that I will find more economical choices for her, she remembers it since then!
This time, we decided to sought for distributors to help out in lowering the costs since we will be getting more than just a handful. Ever since she is back from New York, she seldoms go back home to enjoy with her playmate, Jase korkor. So, we thought of getting her these sticks to pass the night easier, when all volunteers have left the hospital.
Thanks to Stanley Tan - Marketing Manager of LDM Marketing Pte Ltd, who gave us a very good price for just one tube of 50 lightsticks, as we understood that most distributors would not even bother to talk to buyers with just 1 qty. We were so happy with that kind gesture as these lightsticks can be connected into headband, bracelet, necklace etc, that typically cost $2.50 per stick! Looking at the cost savings, Cyn Mommy checked with the volunteers and we ended up getting much more than we orginally wanted. Stanley was so kind in dropping the price even further, after knowing that these sticks were for children in the cancer ward of KK Hospital. We decided to get two light wands, "sword look alike" for the kids to fight and, without saying, Stanley gave good prices for that too.
One would never have thought how much laughter and happiness that these lightsticks bring to the children! Thank you Stanley and LDM Marketing!! Princess Charmaine was so excited playing them.
And, we are glad that, this promise we gave to her, is well fulfilled =D

Love, Charlene

Still fighting that fever!

Thursday, April 8, 2010

We are still here in KK because of the persistent fever that wouldn't go off completely.

Blood tests results all came back negative thankfully!
But yet, nobody knows what is causing this fever...

Chemo was postponed for 4 days now and it's been 4 weeks since our last chemo. I'm getting very worried, sitting on the fact that there are still cancer cells in her body and yet we are not attacking those cells because of her fever...

Doc ordered a chest X Ray today this morning because of her cough that also
seems to be getting worse. Thank god, no pneumonia!

So Dr Aung and I have decided to go ahead with chemo despite fever, switched to a stronger antibiotic. And hopefully, the fever will subside once and for all with no infections and no reason for concern... Ironical to say that since I'm concern even without fever as well. But least, I can sleep better knowing there's no fever.

Dear god, please please please let this fever subside and please let this fever be a simple viral flu and nothing else! Please also pray that char's counts won't drop too drastically so she can fight off get fever soonest.

Thank you.

cyn mommy

Still fever, still not yet started chemo

Wednesday, April 7, 2010

We are still here. Was actually going robe discharged today but fever surfaced this early morning again...

So I'm still waiting for Dr Aung's decision on whether or not to proceed with chemo despite fever...

We are also still waiting for results from her bone marrow biopsy...

Sorry, not in the mood to write much with all these unknowns surrounding me...

Please continue to keep Char in your prayers for no infections, no underlying cause of fever, no fever and good clean results!
Thank you all.

Cyn mommy

Fever and still in KKH

Tuesday, April 6, 2010

It was meant to be an overnight stay and discharge early in the morning but we are still here in KKH.

Dr Aung and I decided to start her new chemo yesterday before discharge but while waiting for the chemo, her temp spiked and reached 39.6. Fever...

So chemo was halted and antibiotics started instead. Char was rather upset for awhile. Cried and said I promised her that it's only 2 days... I hate making empty promises but...

So here we are waiting for her culture results to come back.
Dear God, please let Charmaine's blood cultures and whatever test results come back clean and good so we can start chemo soon. It's more than 3 weeks, I don't wish for any more delay!

Thank you all.

cyn mommy

Bone Marrow Biopsy tomorrow

Sunday, April 4, 2010

Hi all,

Thank you all for your prayers. We were discharged last thurs night after her fever subsided for more than 24 hours. Charmaine was literally jumping, bouncing or I should say, dancing around while waiting for discharge.

That was Thursday. We had a happy good Friday at home, doing nothing much. But just really happy to be home! We missed home and especially missed Jase! Almost 7 days of not seeing him is not fun at all.

And right now, I'm typing from KKH ward 76 again. Charmaine is scheduled for a bone marrow biopsy tomorrow and because she has to do 4 sites, she has to go under GA. And because it's under GA, KKH's rule is admission the day before. So here we are again!

As expected, when I informed Char of our admission today, she said: "I'm not happy and mad!" I tried to comfort her and said it will only be for a day. She very quickly 'un-sulk' her face and said "O.K.A.Y". I know she isn't all that happy but at least she is sweet enough not to make me upset.

And so we skipped and danced our way into KKH earlier. We are blessed today with great and just awesome on-called doctors today!!! I've been rather upset about the nurses telling me that a plug has to be set and bloodworks done. Char has been poked SO MANY times on both her hands and even once on her foot!!! It's especially difficult and frustrating for me as a mother because her veins are getting more like non existent or even a mess of greenish bruise patch and it's even more annoying when I know it's possible to avoid those pokes because she doesn't need to be poked in NUH for neutropenia fever and needless to say, no pokes at all in NYC! I feel like I'm fighting a lost course here but I will not stop fighting. I respect the fact that different doctors have different styles and practices, dependent on wherever they are trained but I just wish that someone could miraculously consolidate all the best practices so that patients will not be succumbed to unnecessary procedures...

So anyway, we got really lucky today! Both the MO who saw Char didn't insist or order for bloodworks! And it was all up to the anesthetist to make the final call! And yeah! She said no need for FBC even!!! So you can imagine my happy little girl laying on the bed besides me now watching her Barbie movie while I typed this. No needles, no poking maketh a happy Char and a happy mommy!

On a more serious note though, biopsy equals to scanxiety for me again. Dear God, please bless Charmaine with good and clean bone marrow and please ensure that the biopsy will be completed smoothly and safely with Char feeling no pain! Thank you!

A quick update on Amelie: The surgery was cancelled due to her low platelet but they inserted another type of tubes instead. And her mom messages me yesterday saying that her platelet went up to 71! Thank you all for your prayers!!!

Please say an extra prayer for my little girl tomorrow. Need to get back to Char now and make her sleep.

cyn mommy

Prayers needed for Amelie

Thursday, April 1, 2010

I'm writing as a mother on behalf of another mother now.

Their daughter, Amelie barely turns 2 is diagnosed with a blood disorder - Aplastic Anemia where the bone marrow doesn't produce blood cells. It's another rare disease. Another family fighting for their baby. Amelie is covered with bruises all over her little body due to her single digit plalet count.

Little Amelie is going in for a surgery to insert a port-a-cath into her body like all other cancer kids. But Amelie has very low plalet counts even after transfusion. I remember when Charmaine was first wheeled in for her first surgery like Amelie. Charmaine's count was considered normal because she hasn't begin her chemo yet and I was already so helpless, worried and scared. I cannot even imagine the amount of anxiety going through her parent's mind. When I enquired about Amelie's condition, tears welled up her mother's eyes. I wanted to provide some comfort but ended up tearing as well. Of course, we know that the doctors will only go ahead if they are confident of the risks. But as mothers, we know how painful it is to sit out and wait in agony for that hour, praying that she wouldn't bleed excessively due to her low plalet counts. No doubt it is usually known as a simple procedure but nothing is simple when a mother or father has to send their own child in for surgery, no matter how small.

I have witnessed your prayers' strength and I believe firmly in that prayers are part of a good doctor, a good medicine and a good nurse in making the treatment work! I believe in what many of you said that everything happens for a reason, and there's usually a lesson behind each reason. Hence, the fact that we are warded in the same room as Amelie must be for a reason too. At this moment in time, there's nothing much we can do except to offer something simple yet powerful - prayers. As such, I'm humbly requesting that if all of you could please say one prayer for Amelie, maybe it's all the difference it would take to help Amelie go through the procedure smoothly and safely. Thank you all so much!

Amelie is fighting a different battle. Chemo won't work on her. Transplants provide a 50% chance but there is no match found yet.

When Charmaine was diagnosed last year, her school speech and drama teacher called me up. She said to me: "I'm going to give birth to a baby in a couple of days and I want to donate all our cord blood to Charmaine." I am touched beyond words. Donation of any kind is a gift of a chance of life for my little girl but donation of one's own baby's cord blood is beyond any description of words! It's giving up the chance for your own child not knowing if she/he will ever need it. Selflessness is an understatement here.

I thanked her Teacher Fen in tears and declined her offer because I had already stored Chatmaine's cord blood myself and it's a decision I'm glad I did!!! Even though we have not used any of her cord blood yet but I'm happy to say that I won't have any regrets of not storing them. Jase is a different story. My than husband doesn't believe in storage of cord blood and I used to obey every decision he made without questioning. I regreted so now. When he walked out on us, I had an intense belief that I only have these 2 kids now and I MUST do everything as a mother to endure that chance of survival for them. Yes, it sounds strange but I just had this strange thought that should something happen to my kids, I will not be able to depend on my now ex husband to come forth and help me save my babies. And how odd it is to actually be in this situation and have all that I strangely assumed had all became such a reality, down to the fact of an non existent father, who not to mention help, but has not even come forth to even peek at his very own blood and kin daughter... I'm so sorry that I digressed again... Pardon me please...

My thought as an oncology mommy is that I regreted not fighting to collect Jase's cord blood even more now because if it had been a match, maybe just maybe... But I'm glad when I had the chance to make decisions on my own, I did one that I will not have any regrets now - I stored Charmaine's cord blood. From a mother to all the mothers to be, please do consider the decision of cord blood storage carefully. Yes you may never need the use of those cord blood but one will never know... Little Amelie's parents didn't store her cord blood and non of her family members are a match... So, please... If you could afford it, why not? Just another insurance policy which is better than just providing money to tide you over... It's another gift of a chance of life which money can't buy...

I have a last purpose in this entry today which I must admit may be too much to ask for. But miracle has happened on Charmaine before and maybe it will happen for little Amelie too. Teacher Fen was the one who inspired me to make this request for little Amelie.

Little Amelie's parents are not sure if Amelie will eventually walk down the path of a transplant. But that option is open to them and the hospital is trying to find a match. Teacher Fen has once offered her baby's cord blood for Char, maybe today someone else will offer their child's cord blood for little Amelie. (The chance of finding a match through cord blood is higher because we don't need a perfect match)

Just maybe...Someone or something will work out a way for Amelie. I have to write this for little Amelie because I feel like this must be the reason we are put in the same room...

Thank you all for your patience in reading this entry today. If anyone of you is offended by my request, I apologise sincerely. Forgive me that I just had to write it out for we never know...

Lastly, please rem to say a prayer for Amelie and do consider cord blood storage carefully!

Cyn mommy

PS: Char temp took another spike last night 7pm to 38. Please continue to pray that her underlying cause of fever is completely healed and no more fever!!!
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