Still in KK

Sunday, February 28, 2010

Charmaine and mommy are still in KK. Char has to finish the 5-day course of antibiotics which is a standard procedure in KK.

Her neutrophils is still 0.

Some brighter news:
1.Fever subsided.
2.Black spot on tongue has lightened a lot.

I pray that means it's geting better but we're still on our toes.

I thank all who have been constantly givin us support and thanx for all the word of encouragement. Pardon us if we don't reply.

We've also been heeding some advice from various of you who had given advice and suggestions.


Admitted for fever

Friday, February 26, 2010

Highest was at 39.2 degree.


A bad day.

Wednesday, February 24, 2010

Today is one of those days where you feel like the unluckiest soul on earth and nothing seems to work right.

Dr has not seen that black spot before and said she is concerned with the blackness on the surface of the tongue. God, help Charmaine pls! Pls let it heal on it's own miraculously. We are treating it as fungal infection for now and Dr has prescribed oral med. Frankly, my mind is not at all feeling any relief. None at all.

Once again, char needed a platelet transfusion. I don't know how many more times I can stay human and sane watching her cry her lungs out literally with the accessing of her portacath! I am infuriated that she has to suffer like this! Her loud cries and screams for my help but I can do nothing. I have to scream louder than her to even get her to hear my voice beyond her screams and cries. I felt like some werewolf about to turn into a beast and tear down the room. I have no reason to be angry at the nurses or doctors and I'm not but my anger is beyond my comprehension. The sadness and the despair consumes me totally now.

She developed hives all over her body barely 15 mins into transfusion. Itchy and red and swollen, started crying non stop again. Even said she couldn't breathe at some point! The doctor definitely isn't responding as swift as I wish but after 2 diff med, she calmed down and fell asleep again. We have been rushing from KK to SGH and back to KK again. Our ordeal is yet to be over. The de-accessing of her needle will be another traumatizing event.

I need to breathe and focus and not crumble but it's been getting harder with each turn of event.


Urgent prayer needed now pls

I woke up and found a big black spot on her tongue! I nearly burst out crying. Am freaked out and paranoid and is trying very hard not to show my fear in front of her now!

She bit her tongue during dinner last night but I swear nothing was there when she went to bed?

Please pray very hard for me that it's nothing serious! I'm seriously on the brink of losing it, just thinking of all the worst!

Thank you all. Rushing to KK now.


Completed day 2 of radiation smoothly!

Tuesday, February 23, 2010

We went KK yesterday morning for a finger prick and her neutrophils are still zero! This is definitely one tough chemo combi. Nonetheless, her platelets and Hb are acceptable and she is in get usual feisty and chirpy mood. And I couldn't be happier!

She took more than an hr before she fell asleep yesterday for RT. Of course, Dr was about to call it quits and reschedule for GA. Thankfully, I explained to Char if she doesn't stop chatting and tries to sleep, we will have to set a plug in her hand for next 2 weeks! She understood and made herself fall asleep! Today was even better! She just fell asleep within 30 mins of sedation!

Her appetite is not at her best which is expected but she will have occasional bouts of hunger which I'm glad. And on days where we have no inpatient, we are usually cycling at our roof top garden! Yes, this princess will not take no for an answer! I'm still the paranoid mom worrying abt her knee but at the same time, I don't wish to deprive her of getting her fun. She always shouts: "I'm having so much fun and I don't want to go home yet!" whenever I ask if we can call it a day. Good thing it's always quite empty and quiet so I don't have to fear abt germs and bugs and yet the kids can have their little bit of sunlight!

We are doing okay and that's the most important!

Char's hair has started to fall off at an exponential rate but when asked if she wanted to shave, she said no. I'm respecting her decision and so far, she is definitely coping it very well like a matured lady. She sees her hair everywhere in the house and even laughs abt it occasionally. I hope that it wouldn't bother her too much when eventually everything falls off.

We have another 8 more sessions of radiation at SGH and we will prob start the second cycle of chemo soon thereafter. In the meantime, I'm praying that her neutrophils return to above 1 very soon and nk infections whatsoever!

With love and hope,
cyn mommy

Blood transfusions just started at 1am now

Saturday, February 20, 2010

My only thought now is that everyone should be taught medical subject in school!

A nurse from a different hospital once said to me that she is taught blood 'die' within 2 hours and it really puzzles her why blood transfusion for kids takes over 3-4 hours. I'm puzzled too. Whenever I casually ask every nurse, each one gives me an interesting answer but seriously doesn't answer my question. Granted, fear of severe side effects is a common reason given for a slower rate over a longer time but if the blood dies after 2 hrs, what's the point of the next 1-2 remaining hours.

When I was a kid, I only knew that we need to study hard because it will enable us to make money. But no one has ever taught me that education and knowledge is also absolutely essential to enable you to maybe help save your own or even your loved ones' lives. I'm thankful my parents provided me with a good chance to study but I truly regret that I'm not smarter than I am right now. Medical jargons and medical journals are seriously the hardest subject!

In this world full of information, different opinions and different practices, decision making is such a delicate and stressful task.

And of course knowing a lot doesn't always mean a better decision will be made but not knowing is what I am taught in school.

Goodnight again.

A rather puzzled and full of question marks Cyn mommy

Back in KK for the night again...

Friday, February 19, 2010

Updates from KK -

Came in this afternoon for a blood test and routine checkup. How unexpected!
Neutrophils came in at only 0.1
HB is very low
Platelets is also exceedingly low.

During the day, she was her chirpy self and even woke up earlier than her brother so she could walk him to school! It's amazing how happy she could get without any needles on her!

Nonetheless, when she had her finger prick, I noticed that her blood colour was so odd! Asked the lab assistant who obviously could only say we have to wait for lab reports.

It's 10pm now and she just fell asleep after her medication and we are waiting to start the platelet transfusion.
Today's accessing of the port was another traumatizing experience for her and me. I bet the onco nurse freaked out too. I still can't exactly grasp what is her fear; the different procedures, the different needle used or just the accutane side effect which she took while in NYC (which causes depression, anxiety, fear or in extreme cases, suicidal). I pray that I have more wisdom to understand the cause so I can help her better.

The blood and platelet transfusions will take more than 4 hours so it will only be done earliest 4am. With good luck and blessings, pending no fever, we will be able to leave early morning.

Next 3 weeks will be busy with daily outpatient radiation at SGH. That will be another story - sedation doesn't work as well on Char now that she's bigger and more aware. We took more than an hr yesterday to get her to finally sleep! The Dr nearly gave up and wanted to reschedule for a GA instead! Thankfully, the therapists were all very patient and understanding! The challenge for coming Monday first radiation will be getting the sedation to work and make her sleep! (Instead of sleeping only when we get onto the taxi and more than 3 hrs continued at home!)

Platelets just came, gotta sign off!

Goodnight everyone!

With love, hope and faith,
cyn mommy

PS: I read all the comments left by everyone and I appreciate every thought, message and of course all the prayers! Pardon me for never writing any personal replies. Thank you all.

We were discharged last night!

Wednesday, February 17, 2010

Hello everyone,

Yes, Dr Aung discharged us last night after her fever has subsided and a platelet transfusion.

It's awesome to be home! Char's knee still look slightly swollen but doc feels comfortable to switch us to oral antibiotics. Of course, I'm warned of the possible horrible side effects. As a mom, one can never be numbed by those words no matter how many times you hear it. It makes you hesitate, makes you worried BUT what other options do I have other than to feed her myself?

Dr Aung said that she has not seen a kid reacted with such low counts and transfusions with this chemo. Indeed, everything went off the norm and all the unexpected happen but I'm grateful, very thankful that we survived and is now home.

On top of all the unexpected, char seemed to have gotten some bad reaction from the port site dye to the plaster they use. Surprisingly, we have used those tagederm plasters before and never had any issues with it. Her skin is red, burned and just painful to look at! And because of that, I refused to allow them to immediately access her port and as a a result, a plug was set on her left hand. She was traumatised and kept crying non stop. We are scheduled to have a radiation simulation tmr and hence opted to leave the plug in.

Always being in a situation deciding what pain to inflict on my own daughter is exceedingly unpleasant but I keep telling myself having options is wonderful compared to none; so complain not. Frankly the plug could have been totally avoided! (Not getting personal but cant help feeling upset)

Radiation is scheduled to start next week. I need all the prayers for everything to proceed smoothly and for her knee infection to totally heal soon!

At the back of my mind, I am still very concerned looking at Char's port site and is wondering how to convince them to use a different plaster so that such incidents do not arise. (I do not think its a plaster allergy because she has used tagederm countless times and never had an incident like this one! She was previously admitted to KK and used the same plasters too!) But yet, I dont want to risk her site getting another reaction like this! If you ask me, based on my limited knowledge, Dr Chui once taught me, when sticking the plasters, pressure shouldn't be applied, ie. stretched, because it would cause the area around the wound to become inflamed/infected (?) I cant remember the exact words but something to that extent which suddenly popped into my mind when I saw how bad Char's site was! I dont want to end this with a 'sigh' but yes I have to think fast before we re-admit again!

Thank you everyone for following us closely and always extending a helping hand. Thank you for all your precious prayers too. THANK YOU ALL.

Its still CNY! Do treasure the moment. Happy first day at work for the rest of my friends! (Trust me, its good to be able to work, no matter how much work sucks) :-)

With love and hope,
Cyn mommy

Happy Chinese New Year!

Sunday, February 14, 2010

Just another short update. Charmaine blood tests yesterday showed that she is neytropenic (zero immunity).

I was rather surprised because though this chemo is high dose but it's apparently not as high as previous rounds however, this is the fastast her counts has dropped to zero already on the fifth day! Previously, it was usually aroun the 10th day or so.

Her fever is still going up and down like a roller coaster! Yesterday it went beyond 39 again! Not sure because of the knee or the zero immune. Whatever it is, she's already on 3 different types of antibiotics. Hopefully she will get well soon so at least I can get her to try and walk again. I don't dare to imagine how long our stay is going to be and worries if I can keep her spirits high for so

Nonetheless, I should just focus on tomorrow and not think too much.

It's tiger year! My biggest wish is for everyone to have a healthy, happy and safe year ahead!

With love and hope,

Thank you to the medical professionals

Friday, February 12, 2010

Day 3 started well with Charmaine feeling chirpy and happy. We played Bingo, puzzle and Candyland and she won me numerous times. Grandpa brought her fav noodle and she ate a huge bowl of it. Chemo infusion started at 1030 hrs and finished at 1700hrs.

Shortly after, she developed a high fever of more than 40 degrees Celsius. We went on panic mode, esp me. Sponged her non stop. She became uncomfortable and upset, crying non stop until she vomited.

Thankfully, the day ended on a good note for me. Her fever subsided a little and when Jase visited with grandma, she was alert and better. I finally fell asleep past midnight when her fever subsided to a reasonable level.

We don't know if the fever arose due to her knee infection or her chemo but for now I'm just glad she is better. Her pain in the knee has subsided totally yesterday but doc thought the swelling has gone up slightly. The orthopedic surgeon came yesterday and said that they are happy with the range of movement she has in her knee now and that the fluid is 2mm in diameter so it's not so much that they want to do an invasive surgery now but they will continue to observe.

Right now, I'm just grateful that things seem to be improving slightly and is pretty much over the fact that we won't get the chance to spend cny at home together with my family. What upsets me most is knowing that my parents will be upset although they will never jeopardize charmaine's health for anything. It's weird hearing some of my friends trying to escape the cny by going overseas whereas I'm so affected that my whole family won't be able to sit down as a family to have our reunion dinner.

But most of all, I realise the people that I should be most thankful to. The doctors and nurses working through the festive holiday instead of spending the occasion with their families. What more do I have to upset with. I'm ashamed truly. Thank you so much to all the wonderful medical professionals working tirelessly to save our little warriors. Thank you from the bottom of my heart.

With hope and love,
cyn mommy

Fever @ 40.1degree now

Thursday, February 11, 2010

Love, Charlene

My heart nearly stopped

Wednesday, February 10, 2010

I could barely hold my tears and almost stopped breathing at the ultrasound scaning. Listening to the doctors discussion happening right in front of you, trying to decipher their words, looking at the images trying to understand them like a doctor and hoping that everything I barely hear or see is wrong and that it's a bad nightmare was what I was praying for the whole time.

I don't know how many times can I do this. I'm really not strong and I don't want to be the chosen one either. I just want everything to be back to what it was.

One day you allow me to see the joy in life. Seeing Jase hopping and dancing his way home from school made me the happiest mom.

The next day you send a fever to Charmaine and caused the chemo to be nearly stopped. Now you have to tell me that there is fluid in her knee which is causing all the pain.

When will things ever become easier in my life?!!?!

On top of the cancer, it's as if my life is not challenging enough! Now this fluid in her knee as well?

I'm tired and beaten. Can anyone help make all these go away miraculously?


Day 2 of Chemo

Char's knee is visibly swollen but doc has no idea what is causing the pain and swell. She's on paracetemol round the clock to try and control the pain and we are going to do a ultrasound and X-Ray to try and determine the cause. The pain is making it impossible for her to sleep but otherwise she is tolerating the chemo well. Doing the X-Ray is going to be a challenge because she is required to straighten her knee which she hasn't done so in days due to the pain.

I pray that her pain will miraculously subside and that there is no cause
for any concern.


Updates from Cyn

Monday, February 8, 2010

Hi everyone,

I am sorry but I am not exactly in the mood to talk or write much. Nonetheless, I know many of you are waiting for updates hence I will do a quick one.

In NYC 28th Jan, Charmaine's MIBG scan showed that she had relapsed in her right knee, right thigh (basically her right femur), right pelvic and also her lower spine. And I thought that was already my biggest nightmare.

But nothing has changed when it comes to bad news. It never ends at one.

Last week in Singapore, they scheduled Charmaine for a MRI to her right leg and lower back which lasted more than 2hours in KK.

The results was shocking and devastating for me.
They saw cancer cells in her left leg as well. I dont know what to say.

Charmaine didnt take the admissions well at all because its seriously not the first thing she expected straight after touching down Singapore. She was looking forward to seeing her Por Por, Gong Gong and just being back home. As such, she was rather grouchy and grumpy throughout. Her appetite isnt good as well. Frankly, I am not taking it well either. I am half assuming that her poor appetite is due to her jet lag and of course the viral infection she caught just before we left NYC. Thankfully, she is finally eating a bit more these 2 days which is a great relief to me because since the scans week in NYC, because of the fasting, she generally hasnt eaten much and has lost half a kg in 2 weeks.

Friday when I received news of the findigs in her left leg as well, it totally crushed me. And one would think that is the last straw.

Come saturday, she suddenly complained of pain in her right knee and started limping the whole day. I was shocked. Its the first time ever since Charmaine's diagnosis that I witness her suffering the direct side effects of the sick monster. It seemed to have gotten much worse in a span of days and by Sunday, she just refused to walk. I had to carry her everywhere, from room to room, or even just to the toilet. It worries me greatly and I just couldnt wait for her Chemotherapy to start soon enough. I am banking all my hopes on the chemo and radiation to kill all the cells and alleviate her of the pain totally. Its an irony but what else can I depend on...

We were supposed to start chemo today but KK is full and can only start Charmaine on Tues. I cannot even begin to imagine how many parents and families are going through the same pain and turmoil we are going through. I wish for no one to even live with hospital visits as part of their daily normal life. Kids should be what they do best - being kids.

I managed to sort out the logistics and found Jase a school while Charmaine is receiving treatment. Thankfully, Jase is happy and looking forward to it. However, Charmaine is very depressed about not being able to attend school like her brother. She beg and pleaded with me yesterday after all the sobbing, saying: "Please, may I just go for one day with Kor Kor to school? Please, please please?". My heart aches seeing how much she yearns to go to school like any other normal kid but something so simple and yet I cannot provide...

Charmaine will be admiting tomorrow for a 4 days high dose Chemo ending on Friday, just in time for CNY back home with family. Chinese New Year has always been my favourite festive holiday, like Christmas and I treasure it alot. I hope that we will at least get to spend CNY at home safely without any hiccups.

This cycle is going to be pretty much like the first cycle she had, with zero immunity and low counts. Dear God, please watch over my little girl Charmaine and bless us with a smooth sailing chemotherapy with no infections. Please God, I NEED YOUR HELP.

Once again, I am pleading for your prayers to help us tide over this challenge safely. Thank you everyone. THANK YOU.


Chemo to start on Tuesday (9 Feb)

Saturday, February 6, 2010

Latest Result

Tuesday, February 2, 2010

Charmaine is still in hospital due to her fever, but there were two good news from Cyn after the tests.

1. There is no tumour
2. There are no cancer cells in her bonemarrow.

So we have now, the relapse on the knee and thigh to resolve as it is now to be caused through blood carrying the cancer cells. A high dosage of chemo will start again soon before the CNY, if her fever can subside faster.

Love, Char

Edited to add by Jo:
For those who are wondering. Cancer cells may be spread to other parts of the body via bone marrow or blood. Both are equally bad but spreading by bone marrow indicates cancer cells there and would be very tough to treat. Hence, it's a good news for #2.

Cynthia and the kids are back in SG

Monday, February 1, 2010

Hi all,

Cynthia and the kids have touched down safely in Singapore. Safe yes, but healthy no.

The kids developed high fever on board the plane which lasted the whole 12hours. It was fortunate that the SQ staff was there for them or Cynthia would not have been able to handle it all alone.

Cyn mommy is also developing symptoms. Before flight, she was already very sick vomiting and all. Charmaine is currently admitted to KK and Jase is at home resting from his high fever.


The trio are back


"WE had the most horrendous 12hours in flight. Both tots developed high fever for almost the whole flight! Jase vommitted thrice! Thanks to the SQ folks else would not have survived. Had to sponge them until we land! Now Jase is home still with fever,. Char is admitted to KK. I'm having symptoms too.

Exhausted and tired.

Love, Char
Feisty Princess Charmaine. Design by Pocket