Inpatient since Wed night 3am

Friday, June 25, 2010

Hi all,

Charmaine complained of eye pain on her left eye corner on tuesday night. My heart probably sank all the way down and I felt like I could barely breathe properly. Just one word of pain from
Charmaine will send me hyperventilating and grasping for air every single time. And with each additional time you hear it, the more paranoid you get...

So anyway, wednesday morning came and she said she could feel the pain but she can control it. I emailed Dr Aung and she called me in the afternoon. Said to observe and call her if it gets any worse. By abt 4pm, her left eye doesn't hurt but her right eye does!

I freaked. I wasn't going to take this travelling pain slightly. I called back KKH operator but she said she couldn't reach Dr Aung. I decided to go down anyway. Will not have any peace of mind if I didn't.

Dr Aung checked her and said she suspected it might be allergy or some dust. Got some naturale tears, went home. Within reaching home an hour, I felt her forehead burning. Told Charmaine to check her temp. She checked and saw 38. Burst out crying loudly that she didn't want to go hospital. Sigh... I know it would upset her greatly. We just got back on sat afternoon and she barely recovered from her chemo. I told her to sleep it off and strangely, the temp dropped immediately.

I checked her hourly and temp started to climb about 9pm. I prepared her for admission. She was still very lethargic and tired. I didn't feel good. She said to rest a little bit more and she would go. But it was evident that she couldn't even rest comfortably. Finally she agreed that it was time to go. We reached KKH abt 1am.

It was almost a rare sight to see such a quiet A&E but I'm glad. It meant that kids are at home sleeping, where they should be.

Fever dropped below 38 once we started first dose of iv fortum but it refused to touch base! It was hovering abt 37.5 to 37.8 and it sucked! So here we are, with zero immunity... Unexpected as this chemo shouldn't drop her counts. But not surprised as she is defin having some sort of infection that her body is fighting...

We are still waiting for her blood test results to come back. Please pray for boring results - negative! and that her temp will finally touch base of 36.9! The rounding doc this week is someone that is trained to keep a patient in for 5 days of antibiotics even when the blood cultures are negative, so it looks like we will be discharged earliest Monday. That will give us abt 4 days to prepare for her birthday and than we will readmit again on Monday 5th July for chemo.

Just a few days ago, I was looking to resting at home as I'm rather ill myself... But in we come again! Oh well, it's still rest nonetheless! I'm just so stressed abt my throat! Loading myself with antibiotics and mask 24/7!

Please pray that this fever goes off completely and that Charmaine will be chatty and feisty again! Thank you so much for checking in on us.
May the bug/virus steer clear of us all!

cyn mommy

Cycle #6 (Cycle #11) Completed and home again!

Monday, June 21, 2010

Just a really quick entry here!

We have completed our chemo on saturday and was discharged.
Home now to enjoy our time away from hospital.

July is a special month for us. Its Charmaine's birthday month. She will be turning 5 soon and I cant be any happier. (We are secretly counting down the days to July!)

The plan now is to stay fever free, infection free and basically just HEALTHY all the way! Did I mention all the way until she celebrates her 100th birthday? Oh well, guess I cant be that greedy! :-)

Our next chemo is due just after her birthday celebration on 5th July.

And we will be repeating all the scans and bone marrow biopsies in the week of 19th July. SCANXIETY but I am NOT thinking about them for now. The scan results will tell us our next course of plans and most slightly, if all goes well, we are set to head back for more treatment in NYC very soon. I am not the most enthusiatic as usual (leaving family and close friends behind) but heading back also means we are heading towards the right direction - the path to recovery.

Will update soon again but my computer has totally died on me this time so updates may not be as frequent until I figure out how to fix it... This July is like last year! Crazy busy with all the travel arrangements and scanxiety and something extra this year - Primary One Registration. Oh gosh, is the registration supposed to be fun? Frankly to me, I thought HOW TOUGH can it be compared to waiting for scan results. So cyn mommy, chill!We will sort that out eventually, the only issue is whether school is just next door or a few junctions away! Either way, he will get a school. I guess my only indulgence is hopefully we will get a compassionate school that will understand our family situation. So when its Charmaine's turn to start Primary One, she will have hopefully less trouble adapting.

Alright, I have to get going. Still tons to be done! May everyone be blessed with a great week ahead. Happiness begins from within us! :-) (Its difficult I know, I am still learning the art too!)

OH OH OH! Did I mention that July/Aug was also the time she NED last year! The best birthday gift for us would be to hear her NED results from her scans! Please continue to keep those prayers coming in! THANK YOU ALL.

Cyn mommy

Relief! Chemo starting today

Tuesday, June 15, 2010

Hello from Ward 76,

We are in the playroom now, Charmaine is watching some videos on Youtube while I am on another computer updating as we wait for her chemo drugs to arrive.

Her pain has reduced considerably. She was able to sleep through the night! I asked if she felt any pain last night. She said yes but it was very little and hence she could control it.

The swelling on her knee has also visibly gone down, THANKFULLY.

So our doctors cleared us and we are ready to go for the next chemo. Cycle #11! Praying that the chemo will do its work and KILL all the cancer cells, if any, still lurking in her body. Otherwise, let her be already completely healed on our mother earth! :-)

Surprise, Jase just dropped us a surprise visit with Gong Gong and breakfast! So yeah, gotta go give my big boy a hug!

Love you all,
Cyn mommy

We need prayers... Swollen knee and pain...

Monday, June 14, 2010

I don't know how to start this entry...

We had a really great time over the weekend playing with all their favourite jie jie and kor kor; everyone came!

But charmaine started with a slight limp on Friday and progressed to a full blown swell and pain...

Admitted yesterday night... Her pain always gets much worse in the middle of the night. Both sat and sun nights were bad, especially Sunday. She literally sobbed for more than 3hrs...

But she is doing better now... Chemo is delayed as a result.

The ultrasound scan turned up nothing. The doctors suspect that it could be due to a fall last Monday when she was playing with Jase. The trauma or injury probably gotten worse as she has not stopped moving since discharge. Dr Aung jokes that Charmaine doesn't do normal activities but high energy level ones. Yeah, she cycles everyday and even with a limp, she wouldn't admit the pain to me. I asked every 5 min because I was so paranoid and concerned but she kept denying the whole friday and Saturday. Only at evening of sat, when we completed all our activities did she suddenly asked to be carried as her knee was painful. And it was only than she confessed that she was actually having a little bit of pain since Friday.

This is Charmaine. I don't know if it's a blessing or what but she sure has an amazing tolerance for pain. Her threshold is so unbelievable that she wouldn't cringe until it gets seriously bad.

And that's why I suspect that the reason why her pain always seems to get so much worse or unbearable in the middle of the night... Because her subconscious is too tired and she has forgotten to tolerate the pain...

Now, no treatment... We are just waiting to see how it goes tomorrow. She says she can feel a slight pain but she is definitely not complaining at all! Hence, unless you ask, you would never know if she is in pain.

Please continue to keep charmaine in your prayers. Dear god, please let this be an injury from a simple fall and that she is already recovering. Please let her have a restful sleep tonight with no pain but sweet dreams.

I just want to end by saying that Charmaine has grown to become my 17.4kg bundle of joy!!! It's the first time she crossed 17kg!!!

Hoping that everyone is doing good. Take care.

cyn mommy

Home SWEET Home!

Tuesday, June 8, 2010

We were discharged yesterday afternoon and Charmaine literally dashed OUTTA of her room!

And I've been trying to run after her since! Nothing could stop her, I figured that she must be trying to use up all the energy she has saved for the last 7 days! HAHA.

Brother and sister are now both out cycling whereas I am home. Was supposed to try and take a nap as my meds are making me drowsy but decided to drop a short one here!

I think people in the hospital must be wondering how ODD this mother and daughter are! People who knows Charmaine personally will have no trouble picturing a scene of her taking off and hopping, jumping bouncing everywhere. She simply wouldnt walk. And than she whines: "IT'S SO HOT!" I said, "Obviously honey, you are hopping like a bunny non stop." By the time I finished my phrase, she is already out of my sight and many metres away from me! Imagine me pushing her stroller in one hand, and a luggage in the other, chasing after her! HAHA.

One more day of oral anti-viral medication for her today and the rest of the week, she will be free! To roam, jump, hop and dance!


She is neutropenic, unexpectedly! Due to her body trying to fight the infection. But it has climbed up yesterday to 0.5 so we should be good for chemo next monday!

Going to try and take a rest now. Love you all and thank you for all your prayers. Life is WONDERFUL!!!

Cyn mommy!

Miley Cyrus - The Climb

Monday, June 7, 2010

Charmaine had a special liking to this song.
While she doesnt know the full lyrics of this, it is nothing more appropriate for her, than this song.

Keep pushing, our baby girl and cyn mommy =D

- The Climb -
Ican almost see it That dream I’m dreaming but
There’s a voice inside my head sayin, You’ll never reach it,
Every step I’m taking, Every move I make feels
Lost with no direction My faith is shaking but I
Got to keep tryin Got to keep my head held high

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

The struggles I’m facing, The chances I’m taking
Sometimes they might knock me down but
No I’m not breaking I may not know it
But these are the moments that
I’m going to remember most yeah
Just got to keep going
And I, I got to be strong
Just keep pushing on, cause

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

Keep on moving Keep climbing
Keep the faith baby
It’s all about It’s all about
The climb
Keep the faith Keep your faith

Love, Charlene

5 days in Ward 4X

Sunday, June 6, 2010

It has been 5 days since the admission, and the doctor has given the go-ahead for discharge for Monday. Of course, the girls are sad, as they have to return to KK for another round of Chemo. However, spirits are running very high in the Ward 4X with their favourite Dolphin nurse jiejie watching over Charmaine closely.

We recruited two new nannies for this afternoon

The weekend crew to entertain the kids

Love, Charlene

It's shingles!

Tuesday, June 1, 2010

Last week, we were fighting Rotavirus and this week, shingles creeped into our lives...

And the irony is her immune isn't even below the acceptable low. She is not considered neutropenic and she is supposed to be slightly stronger (although bearing in mind their strongest is prob nothing like ours). Yet, in every cycle of this rather light chemo, we seem to have one new bug/virus welcomed into our lives... I don't know what to say. I don't know what have I done differently or inadequately...

But one thing is for sure... All these new infections all point to one fact. Although the chemos are considered light, but with each additional infusion into her body, her body takes another beating and another toil... Because whenever we start a new round, we always start with a
much less stronger body compared to the previous round, even if we allowed the body to rest for a couple of weeks...

So here we are... In 5-7 days of total isolation from the rest of the world. We barely just walked out of here 3 days ago!

I'm not complaining though. We will ride out this together. And yes, it could have been worse, so I should be thankful it's shingles. Having said that, shingles for normal people like us is nothing more than chicken pox but with pain. But simple things are just not simple with onco patients.

I'm praying that we caught it early and that she will recover from this ordeal soon and NO PAIN! Keep it simple and boring pls.

Her potassium is scaringly low at 2.5! We have never dropped this low despite how tired and lethargic she was previously! And these last few days home, she was neither tired nor lethargic! Abundance of laughters, jumping and playing with her kor kor while I was just a sick cat. And yet, such low levels! They are hooking her up to some machine to monitor her heart rate which they said low potassium could affect...

I am puzzled myself too... Will ask doctor and research abit...

It's Jase first ever swimming lesson today. I had been so excited whole day yesterday and was worried that my fever wouldn't subside soon enough to bring him in today. But alas, those red spots that grew so much last night made me lose all my sleep and this morning, I just couldn't even sit at the pool to watch him in his first water experience... I was busy emailing Dr Aung, calling the ward... Because although I've never ever seen shingles in my life, the moment I saw those red spots, my first thought was shingles! And I didn't want to expose others to it in case I am right.

Jase has one of his baby teeth shaking. I am going a little crazy over this phase of Jase's growth! In a wonderful way of course! I even asked my mom when did I drop my first ever baby tooth? She said she had been too busy working that she had forgotten. :-) I live 2 different lives through both my kids, and it's filled with entirely different experiences. Watching Jase grow up is so priceless! Although I'm stressed with his primary one registration but which parent doesn't! And it simply means they are growing up well! Witnessing him balance his bicycle on 2 wheels and take off like an expert made me one very proud and emotional mom that day! He has grown!!! He can actually cycle on 2 wheels without me teaching him! He has learned so much things on his own because I hardly spend enough time with him. He has learned to accept things like a little young man. Sometimes almost too much that he didn't even tell me that he bumped into his friend while playing and had such a huge bump on his head which I didn't even realize until Charlene mentioned! :-( but ya, he doesn't complain at all. Not a single bit. He doesn't even try to bargain for better chips like our little princess! Mostly, he just listens and accepts. He dares to try even if he is scared. He understands his role as a big brother. Whenever he comes to hospital to visit, he never leaves us without kissing us goodnight, goodbye and I love yous. On the few occasions he almost forgot, he came dashing back to our bed, screaming his I love yous across the hallway! Such joy, such love... I am indeed honoured and blessed. And I have no doubt every mother feels the same pride and joy as I do.

In my other life, the journey has definitely not been easy but don't everyone experience a rough patch or 2 in their lives? Of course, I would gladly give up this life in exchange for plain boredom! And I might even insist that I treasure life just as much even without death staring right in my face! Having said all that and despite a very different childhood from the normal kids, my little girl is growing too! Every single day! (I just pray and plead and hope that whatever that shouldn't be growing isn't!) Charmaine has grown from enjoying Barney to watching Dora and now, wanting to be a Barbie princess! It's just exactly the same way my Neighbour has described to me years back when she handed me her old DVDs! The same way her little girl has grown and matured! And now I found myself passing down this 'knowledge' to another mommy with her baby girl! Yeah!!! I do worry on a every second basis but I also get to witness her growing on a every second basis! Like the way she is speaking just like me! Lol. She uses the same big words I used on her on myself! And she whines the same exact way I whine! And she sure can bargain and negotiate her way! Oh, did I mention that she even has to decide what she wears, whether she should go hospital or not!!! Oh yeah, she's definitely the boss! Haha. And one very smart and knowledgable boss! She knows what is chemo, portacath, getting accessed, all the apparatus, she understands fully what are the risks of not rushing down to hospital when she has a fever, she knows whats the normal BP range for a 5 yr old kid, she knows where is KPE, TPE, CTE, PIE! And she is a real threat to the nurses! Haha. She observes every step the nurses take carefully! She knows how to get rid of bubbles in tubes, she knows how to flick her syringes... And alot more!

It's 1st June 2010 today! We are almost at the halfway mark of the year. So nice to have everyone I love with me right now as I type this! Yes it would have been even better if we are not actually in a hospital room, but I can Iive with this! We are now trying to decipher this new machine that is making lots of noise! Charmaine is obviously very upset and disappointed at having to stay here. At least in our usual ward 76, there are lots of her usual friends and nurses that she can chat with and disturb. But in this room, there's only her boring mom and noisy machines!

So we have decided to master the technique of reading this new machine and we are also having a big party here! It's tent pitching time with blankets and pillows and lots of hiding! Haha!

Hmm, the respiratory rate is one tough rate to understand! Char kept asking me WHY is it going up and down all the time! No idea, couldn't find a pattern yet!

I hope everyone is happy and healthy and having lots of fun!

With lots of love,
Cyn mommy!

Red patches of rashes on Char's body

Cyn Mommy has taken photographs for the doctor. The spots appear 1 day ago, and has since spread over a larger patch. the spots are not itchy or pain for Charmaine.

She is worried that it might be something of viral infection.

Please pray they are just normal heat rashes.

Love, Charlene
Feisty Princess Charmaine. Design by Pocket