Completed Chemo on Friday and home now

Saturday, May 29, 2010

Hi all,

After 8 days inpatient, we were finally discharged from KKH yesterday. No more fevers and chemo #5 completed finally.

Jase felt ill a day after Charmaine's fever started and thankfully, Charlene and Guowen volunteered to help me look after Jase overnight for me immediately upon hearing how concerned I was for not being able to be home for Jase. Especially when kids' fever always seem to prefer to creep up to ridiculously high degrees overnight...

Anyway, thanks to their care, Jase recovered very quickly within 2 days! Charmaine's fever also subsided but they found Rotavirus in Charmaine's stool. No medication for that since its viral but Charmaine is doing well considering all that diarrhea.

And now its my turn for my engine to stall, fell ill myself too. Nothing serious, just needed some sleep and rest to ride it out.

Its been quite a week in Ward 76... Hearing the tests and scans results of other families... Kids we have grown attached to... Families thats almost like our own... Its tough. My heart feels so heavy... Everything is so surreal and anytime, anyone of us families could be in that situation... Not responding well, new spots... such simple words that most primary school kids would understand and be able to spell... but yet, they mean an entirely different connotation to us. Meanings that will not make any sense to non oncology families... Sigh... those new terms and vocabulary we learn...

I want to write a thankful entry. I want to sing praises of all the good things that happened - Charmaine's fever subsided and Jase has also recovered from his, we are discharged safely... I kept reminding myself to only write the positive and think the wonderful... I said "DO NOT GIVE UP" to the mommy.

But despite all that I said to myself, I am affected. I am upset. I am disappointed. I am sad.

I cannot shake off the evil thoughts. I cannot focus. Oh God, its so tough...

Thankfully, its only me. Both Jase and Charmaine are happy doing their daily chores and messing up the room continously.

My jumbled thoughts and very incoherent sentences here... Please pardon me.

And the normal stress, Primary One registration coming closer.

And the not so normal stress, how to plan anything when nothing is concrete. I dont even know when is our next chemo...

I dont know when we are heading back to NYC but I hope it will be after Jase's registration. I dont know what are our next treatment options and plans... I dont know how long or what kind of schedule is Charmaine's treatment going to be like in NYC, so I dont know what to do with Jase's schooling...

I will not think now... cant think... cough is irritating my throat and mind is clouded by evil thoughts...

I have to get well soon. I have to make sure that I clear the clouds in my mind and I have to make those decisions at some point and I have to stay positive...

So so so sorry for this very horrible entry. I just wanted to inform everyone that Charmaine has already been discharged and we are well, so as not to make everyone worry. Oh, and also apologies for not updating last week because somehow, my phone doesnt work when I was trying to update the blog (AGAIN). So I had to trouble Charlene to drop a quick update despite her busy work.

And in case you dont hear from me the next week, please know that we are OKAY.

I just cannot stay unaffected knowing what other warrior families are going through...
Please say a little prayer for all the warriors having treatments, battling their own war, young and old... Dear God, please grant us a miracle so that there is NO cancer in this earthly world.

Thank you all and goodnight...

Cyn mommy

Chemo in KKH

Tuesday, May 25, 2010

Fever has subsided, diarrhoea started though =(
Chemo has been delayed and today is Day 1, after a 2-3weeks of no action.

There was no home leave today due to the delay in chemo.

But, our feisty princess still fights on, happily, even with the diarrhoea.

Thanks for all prayers, she is very happy right now =)

Love, Char

I love you so....

Saturday, May 22, 2010

Everything speaks from this photo.
Cyn Mommy, don't ever think you have failed as a mother, a father, and as their best friend.
They are growing up to be the bestest siblings of all.

Love, Char

Came in for chemo this morning but fever now!

Friday, May 21, 2010

We are well

Wednesday, May 19, 2010

Dear All,

So sorry for the lack of updates...

Charmaine and I have been going in and out of hospital so frequently that it was so exhausting for me... We would be out and barely 24hrs later, the fever would surface again. I was worried and frustrated! Her temp just wouldn't stay stable at a normal range of 36.9 to 37.2. Thankfully all her blood tests results came out good. They did find a bacteria in her stool which they say may have aggravated her diarrhea this round... Even up till last Friday, her diarrhea was still persistent. Hence we had to continue her antibiotics for 3 more days and postpone her chemo to this Friday instead!

All these admissions and discharge finally ended on 9th May (which was when we just made it home to celebrate Mother's day with my mom and Jolene) but the abdominal pains continued for a couple more days. By mid week, Charmaine's temp stabilized at a normal range and we were able to enjoy our 'normal' lives.

I have no idea why but I've been feeling rather drained, both physically and mentally. Probably because I was expecting the last chemo to be more tolerable and less admissions and was doubly disappointed when it turned out that we had more fevers and more admissions. She was also visibly weaker...

That was last week. We are good now. It felt like so long ago since we had our normal lives... In our lives, no news is good news... I am very sorry for making you all worried with our lack of updates... I know how upsetting it can get because I myself am following quite a number of blogs of the onco kids in America and gets worried too when there is a lack of updates... However, there is an unspoken understanding between most of us onco families which I dont expect anyone on the outside to understand... its a life which many others have, a life outside of cancer... a life where we get about doing the simple and basic stuff, worrying about bills, fretting about the untidy rooms, doing the endless chores day in and day out and once we get back to that 'normal' lives of ours, we want to hold on to every moment of it. Coming back here to write brings back the harsh reality that I dont want to face and dont want to think about.

As Charmaine got better last week, her Godma Alexis brought us all out. I was jittery but I definitely wanted to give Charmaine a chance to be like any other child her age and having seen how happy she was when I brought her out briefly after chemo #3, I knew she needed to get out and play so that she would regain her strength and her spirit to fight back even faster. It was a much needed break for myself too. I have never been happier in a long long time. We packed our days away from hospitals with activities. Seeing Godma Alexis, hanging out with Charlene Jie Jie and going out with Godma Jolene was beyond awesome. The kor kors and uncles visited as well. I forgot my other life. I forgot that Charmaine is sick. I forgot everything cancer. I stayed away from everything related to neuroblastoma except for our doctor's appt and the antibiotics that she needed to take daily. And I stayed away from online blogging... I dont know why but everytime I type here, my tears wouldnt listen to me...

It was such a much needed break for me. I have so much I want to share about how I felt and how tiring everything is... but I had my break and I recharged my batteries so I shall not rake up those feelings of lethargic anymore.

We also celebrated Jase birthday last sunday at Josse's home. THANK YOU JOSSE! And thank you to all the jie jies and kor kors whom helped! It was a cozy and warm affair which gave me the opportunity to catch up with family and the few friends whom I call family. It meant a lot to me, to see the happy faces of my children. It reminded me the meaning of life and provided a great source of strength for me to continue our battle. Its always bittersweet as it brought back memories of last year. Last year, I didnt get to spend Jase's birthday with him as Charmaine was admitted in hospital for fever and Godma Jolene and Charlene jiejie had to take leave to spend the day with him on my behalf. And last year this time, we were preparing to go into operation... the whole mood was just sombre. Hence, I am thankful, grateful and especially touched that we get to celebrate this year and spend this special day together and the kids had such a blast because of the kor kors and jie jies! I think Charlene jie jie had a bad muscle ache for days after the party! HAHA.

For the past week, Charmaine has been shouting across my face, telling me how HAPPY she is and she has been thanking me every single time for all the little things that we do, even if its just going across to United Square for a short walk after a finger prick and check-up at KKH. My heart feels so warm and I am so happy. I always make it a point to tell Jase and Charmaine how thankful I am for their excellent behaviour and for all the things they did right or did not do and I think Charmaine has learned it very well! Jase, being a boy tends not to be as vocal as Charmaine is.

For those of you following Charmaine's progress, here is a brief summary of the latest in case you didnt catch it during the previous post. Basically, Charmaine's latest scans in April showed that her right femur (thigh) is still not clear. After seeing her scans, the MSKCC doctors have ordered for Charmaine to have another 2-3 cycles of chemo (irinotecan and temodar) and repeat all the scans and tests. I will than send all the reports and scans to NYC for them to make their evaluation and recommendation. As of now, she has already completed 4 cycles of chemo for her relapsed treatment and we are doing the 5th cycle this coming friday. (All in all, since diagnosis until today, she has already done 9 cycles of chemo in total - going into our #10 cycle!) In short, we will be here in Singapore for a couple more months.

Thats about all I have for everyone for now. Please kindly bear in mind that when you dont hear it from me or anyone of us, it usually means 'No news is good news' in our world. I seek your kind understanding and am grateful everyday for having all of you supporting us in one way or another. Even when I stayed away from everything to recharge, I never once forget the kind souls in my life. Just like this is a lifelong battle, all of you are my lifelong angels in one way or another.

I wish everyone happiness and good health.

Cyn mommy

PS: A very belated HAPPY MOTHER'S DAY greeting to all the great mommies out there!

Happy Mother's Day!

Monday, May 10, 2010

We had a mini celebration after Charmaine was discharged this morning.

The kids taught us how to play Monopoly Junior. They were really good at counting and remembering most of the rules.

Next, it was time for lots of photo-taking of the cake...

and with the 3 mommies and the cake...

and smooching the animals...

Special shout out to Ko Chen and Kellie!

Ko Chen,
Thank you for your kind thoughts of ordering a cake for Cyn mommy for Mother's Day and coordinating with Kellie. Really appreciate how human angels could exist on earth.

Thank you for your wonderful cake which received lots of compliments and bewilderment of your craft and skills. We spent so much time takng photos of the cake and not bearing to cut it. The animals and dolls holding the words saying "We <3Mummy" are just too cute!

Hope the both of you enjoyed Mother's Day as well.

We went to view Kellie's blog [] when Ko Chen first emailed us and we were really thrilled by the 3D cakes!

3 nights before Mother's Day, cyn mommy was asking Jase and Charmaine what kinda cake they would like mommy to have as a nice aunty was gonna design it accordingly.

Jase's reply:
I like a strawberry house for mummy. Then must have many animals to say "Happy Birthday".
[Haha... This is despite telling them that it's for mother's day, not mummy's bday. Lolz]

Charmaine's reply:
I like to have 2 Barbie dolls. One green one pink [I forgot is it one green one pink or one yellow one pink] and with cake all around.
[LoLz... cyn and I suspect she was dreaming of her OWN bday cake the previous 2 years.]

With the 2 kids' input, Kellie conjured up a cake almost true to their words -- a strawberry house with animals "talking" and the dolls representing Barbie.

We almost could not make it for our mother's day dinner later in the evening coz the kids were sticking to Godpa kh like this...

and lil char char showed how brave she was by downing the unpleasant medicine.

That's how the Lim family spent their mother's day-- Sitting down as a family, having a meal at home and eating cake. I do hope you enjoyed spending time with your mothers and for the mothers, I hope you had an enjoyable day with your kids.

Here's wishing a very happy mother's day to all the great mommies out there!


And so, they grow....

Tuesday, May 4, 2010

time must have been wheezing by for I never realise how much both have grown over the last few months. It seemed like yesterday, when we wore our Xmas hat @ RMCC, shivering in the cold bitter winter of NYC.

Days without Jase, Charmaine will send in random sms that she clicked on the phone. The smile that she gives, when she says, Charlene jiejie, where is your phone, u know that this cheeky princess of ours, is bound to something naughty. To pass her time in the hospital, she also sends random sms to all of us, feeling proud of herself that she had mastered the "adult skills".

Weikang was first shocked by Jase sms, then Cynthia. We have not stopped and think, how this little boy, has grown to be a man, in just 6 months stint in NYC. His actions, his thoughts, and now, his linguistic capabilities.

Now, the smses sent out by both of them, makes more sense. Though short answers, at least it meant, he understood =D
Charlene: I love U, U love me, we are a big family
Char&Jase: no
Charlene: CRY!
Charlene: U love weikang korkor?
Char&Jase: yes
Charlene: I am crying. U want to kiss me?
Char&Jase: no

They make my day! =)

Here's a drawing and writing by the kids when they pop by my workplace few weeks back. Love u!

Love, Char

Hello from KKH...

Hey everybody,

We are back in KK again! Since yesterday, char has been rather lethargic, not exactly her usual self... She does try to have fun every now and then but it seems that her body doesn't wanna listen to her mind. Within 10 mins of play, she would say that she's very tired...

Throughout the day, she experienced abdominal pains coming on and off and diarrehea, which are all side effects from the chemo drug - irinotecan. While these are sort of expected as she experienced the same side effects last cycle, I must admit that her low level of energy is definitely something new and worrying...

It's now past 1am. We arrived at A&E abt 2230 hrs and until now, no medication. I'm kind of used to such routines though. I must say it can be rather universal. In NYC, the waiting time for medication can be rather long and daunting too. Best experience so far has to be NUH where the onco nurses would actually go down to access the child and start them on antibiotics while waiting for a bed.

Today, we were all shocked when we walked into the doors of A&E! The entire place was swamped with families! It wad fully packed to the brim I think there were easily close to hundred of people in there. Good grief!

Despite the number of people waiting, we were attended to within 30 mins. I'm so grateful because frankly, I was rather freaked out at the over-crowding with char just completed chemo 2 days ago, I was honestly very concerned and paranoid at the amount of virus floating around! Thank god, there were also available beds at ward 76.

Nonetheless, although we got to our bed abt 12, the doctors didn't come until more then an hour later. I wasn't too frustrated, because I had witnessed the craziness at the A&E myself. But I was just a little upset at having to rouse Char up after she has fallen soundly asleep.

We are all done now! Paracetemol and fortum are given. All I have to do now is to sponge her and try not to doze off in between.

Please pray for all her blood culture results to be good and negative and of course for her fever to go off entirely!!!

Goodnight everybody!

cyn mommy

Sweetness in Punggol

Monday, May 3, 2010

Taken a few weeks back, our little princess walked back home with jase korkor.Automatically, they locked themselves together. The bond between the two, loves and breaks one's heart. Love, for Jase selfless love to Charmaine, attending to Charmaine every demanding request. Love, for Charmaine to Jase, smiling and enjoying every single moment with her korkor. Heartbroken, for I had not learned such act of selflessness to my very own siblings.

Days when you thought, you had made the wrong decision, to bring Jase to New York, to bring Charmaine to go through the pain any kids shouldnt need, you are totally wrong. New York, has been a tremendous learning experience for Jase. Despite the criticisms from people of Land of Heartless, U gave them all you had, all you should, and all you could.

Dont cry after reading this post, my silly babe.
We are all proud of u!

Babe, Happy Mother's Day to you. Have faith, and your wish, will come true.
Muackz muackz!

For now, relax in the cab, though I know you cant.
Cyn @ 1045pm: Fever and rushing to KK now. She was very lethargic whole day which is very worrying. Just tired and no energy. But now that we are in taxi, she's talking non stop! Thank god the talking non stop girl of mine is back.

Love, Char

Chemo done and HOME~!

Sunday, May 2, 2010

Hello everyone,

I know many of you must be worried over the lack of updates. My sincere apologies. We admitted on Tuesday to start Charmaine's #4 cycle of Chemo - Irinotecan and Temodar. Finally completed the 5 days chemo on Saturday yesterday.

As the chemo takes about 2hours each day, we were allowed home leave daily. Boy, it was so tiring but all worth it!

The first day was slightly more exhuasting. We arrived at KKH before 9am and because we had to wait for blood tests which took more than 1.5hr before we could start the chemo, we only completed everything about 5pm!

We hurriedly left for home as we had left Jase with our neighbour who helped to babysit as my mom had her own medical checkup at TTSH. And because of all the delays at KKH, we couldnt make it back in time to pick him from school.

When we got to our neighbour's, the 3 kiddos spent another hour playing while I finally could take a breather. After dinner, we made our way back to KKH about 10pm and that was basically our routine daily.

Charmaine would announce to everyone who called that she was on "HOME LEAVE"! HAHA. Some days, she got a little tired from the chemo and would fall asleep the moment we got into the cab but without fail, she would at least get a couple of hours each day with her kor kor and that made her the happiest little bundle of joy! On days she didnt fall asleep, the moment we got off the cab, she would literally bounce and skip and dance her way up to our flat and kept calling for :"Jase Jase, we are home!"

It sounded pretty much like a daily outpatient treatment but gheez, I would be so exhausted by the time we return to the hospital and would immediately doze off after putting Charmaine to bed. Over the last few days, also had to prepare the scan reports and CDs to be sent over to NYC. Thankfully to Angela, who would make her way down to KKH way past 10pm for so many nights just to help me burn those CDs! Thank you babe!

In short, that was our life for the past 5/6 days and I'm honestly just very glad to be able to home and not having to rush down to KKH daily.

This morning when Charmaine woke up, she was SO HAPPY. Went to brush her teeth with her kor kor and changed out of their pjs themselves while I continue to laze in bed. :-) Barely an hour later, Char became very quiet. I asked if she was not feeling well. She said no. And 15mins later, she started crying of abdominal pains. Ran to her bed and curled her body and just kept crying... I immediately checked her temp and gave her some paracetemol. Told her to try and get some sleep but it was difficult as she had just woke up barely 2hrs ago! Hence, she spent the next 45mins having pains intermittenly. Reminded me of a mother going through contractual pains...

The pain finally stopped. And she continued playing with Jase after he came back from lessons. 2hrs later, she suddenly cried of pain again. No paracetemol allowed since she just had. She tolerated the pains but just couldnt fall asleep...

Got better again and one moment she would laughing her trademark laughters and the next moment she would suddenly burst out crying...

This is pretty much our routine today...

Gotta run as she is now crying of pains again.

With love,
Feisty Princess Charmaine. Design by Pocket