Still inpatient

Saturday, January 29, 2011

I'm deeply sorry for the lack of updates but I have been finding it harder to write...

This is will be short update...

We completed chemo yesterday on Friday. She spiked a fever on Wednesday and the 48 hours culture (blood test for infections) result came back negative yesterday which was a relief. However she spiked an other fever yesterday so we had to do another blood culture and we are stuck inpatient again...

The palliative team came in on Wednesday to help us manage her increasing leg pain... And now her pain is better managed. She's on oral morphine as and when she needs it and also on a fentanyl patch which will release morphine onto the skin throughout 72 hrs, which will save Char the discomfort of having to swallow huge amount of medication almost every 2 hours on a perpetually empty stomach because of her loss of appetite.

In her own words, her pain is never at zero, at best a one which she can tolerate... With all the antiobiotics, anti vomit medications, pain relief medications, she is feeling extreme fatigue and doped most of the times but she continues to push herself to stay awake and play with Jase whenever he is here...

I'm hoping that we will be discharged in a few days so that we will get to spend our CNY eve at home. At this time when my faith is wavering and almost non existent, I am ever more dependent on your faith and prayers to get through. Please pray for a miraculous healing for Char and for her pain to disappear soon...

cyn mommy

Excruciating pain...

Tuesday, January 25, 2011

Charmaine's right leg is in excruciating pain...

We cried and cried and amidst her pain and cries, she kept touching my face, telling me: "Mommy, I'm so sorry to make you cry... I'm so sorry I can't control my pain..." when the pain gets worse, she screams: "Mommy, I love you so much!"

She keeps repeating those lines and keeps screaming "I love you so much Mommy!!!"

My heart keeps bleeding... My tears keep dropping... Not because of my helplessness but because of her love for me... I can't save her... How can I be deserving of such depth of love... She doesn't forget to show me her love even when she is suffering so much and in such degree of pain...

Please please please pray for my little girl to be healed on earth... The toughest part of this entire journey is not wheeling her into a major operation, neither is it the high dose chemo, nor the horrific side effects... IT IS WATCHING MY BELOVED CHILD IN EXCRUCIATING PAIN and I am rendered helpless... The degree of pain all these kids with cancer have to suffer through is inhumane and heart wrenching. And they have done nothing to deserve any of these... Nothing at all...

Please pray with me for a miracle...

cyn mommy

Some happy times, some rough days...

Monday, January 24, 2011

Has it been a week already? Everything seems to be flying past me and yet, I feel like nothing much has changed; like we are still at a stagnant phase in our lives, doing the same things over and over, praying, wishing and hoping for a positive change...

We were basically home to recuperate from Char's surgery last Monday. It wasn't easy to tell my feisty little girl to not move around much even when she is in pain. Her mind is very capable of shutting away her pain when she is at play. Her mind power far surpasses mine and she keeps pushing herself to just do one more thing, despite the pain and fatigue. Just like her surprise 20.3 million stem cells collection in one day, she continues to draw her strength from her secret treasure chest somewhere deep down in her.

Of course, we had a good scare when she went down for a walk barely 2 days post surgery while I was out to fetch Jase from school. And the night ended with the area surrounding her wound becoming red and her temp climbing up to 37.8! I was freaked out! Took a picture, emailed Dr Chui and called him. Thank God the redness subsided after a dose of antibiotics and strict instructions from Dr Chui not to move too much.

We went to Clinic for a discussion with Dr Aung on Thursday and were pleasantly suprised to find that her get ANC (immunity) has risen to 0.9! Not the best because the minimum is 1 nevertheless, her little body has gone through so much chemo, it takes a much much longer time to recover and we are already a month past our last chemo in Dec... Which didn't work to control her cancer cells... As such, each additional day that we take to wait for her counts to recover is an additional day of risk, knowing her cancer is spreading... Double whammy as usual.

Before I went down to meet Dr Aung, I had already sort of decided on the direction of Char treatments, knowing that I do not want to put her through another high dose chemo. As such, we immediately started her new treatment the next day, last Friday.

She is on a new protocol which is under a clinical trial phase in New York, and we were really blessed to have the drug available in Singapore for adult oncology patients. The drug is called Avastin and it is not exactly a toxic drug like chemo but of course, it is not without side effects as well.

In fact, I was dismayed and shocked to find that her lips turned pale a couple hours after the 90mins infusion... I had spoken to 2 moms in NY whose child was on the same protocol and was warned that one of the side effects was severe nose bled for hours... Hmm, definitely wasn't prepared for the extreme fatigue, the pale lips, the nausea, the vomiting to set in... So while I'm comforted that we have a plan... I'm heartbroken to see her suffer... My only push factor is to tell myself to pray that everything is going to be worth it...

She continues to be more unwell over the weekend, but was adament abt going out with Angela jie jie and Rich Kor Kor to fly kite. In fact, she said she was not in pain, insisted to walk and even stood up to fly her own kite... Despite her efforts, I could tell that she was straining herself, pushing herself constantly because it's so easy to tell that she is just plain exhausted with a pale face...

Her pain also surfaced on Saturday night... This time, it's her right leg again. Both nights, she was in so much discomfort and pain that she couldn't sleep... Even after the pain relief meds... Last night was even more rough... Only this morning did she manage to fall asleep after different pain relief meds...

This morning, we rushed to Mt E to have Dr Chui check her surgical wound and is now at KKH, waiting to start our 5 days chemo - Irinotecan and Temodar. 2nd part of this protocol. Our last part will be next Friday, the second infusion of Avastin. Hoping that Heaven will have mercy on us and allow my dear princess to be home to enjoy CNY the way a normal child enjoys it - no pain, no inpatient stay...

I was actually very concerned over her extreme fatigue and nausea over the weekend and wasn't sure if she still has low immunity or not... But her counts we took an hour ago is showing incredulous results - ANC of 3!!! HGB 11 and platelets 189! To be honest, the numbers do not represent her physical behaviour. I'm almost skeptical and wonder if they got a wrong sample from a different patient!!! How else cane we explain her lethargic and all that nausea with such great immunity? Side effects of Avastin?!?! Never heard from other parents about this... Are we one of the rare ones?!?!

Nevertheless, Dr Aung is confident enough to start chemo and I trust her! We really can't afford any delays anymore...

So please pray with me that this new protocol will be able to bring Charmaine into our much needed stability. And that we will be able to complete our chemo regimen smoothly with no hiccups. Please also pray for her pain to subside totally so she
can walk on her own again and be the happy girl she is.

Thank you everyone.

cyn mommy

The Kiddos saying Hi

Sunday, January 23, 2011

Love, Char

Char is out of surgery

Tuesday, January 18, 2011

The surgery went smoothly and char has already started walking on her own. She still complains of pain in her wound but is insisting to 'control' her pain rather than relying on pain relief meds.

Thank you all for the prayers and thoughts.
Keeping this short. Will update once I get out of limbo land...

cyn mommy

Tumour Removal

Monday, January 17, 2011

Charmaine just had a last minute operation to remove her tumour.

Thanks for everyone prayers and Dr Chui's expertise. She is safe out of operation theatre.

Love, Char

A last minute decision... Surgery right now...

I met our Surgeon, Dr Chui this morning for a discussion on the probability of surgery.

And everything just kind of moved really fast. We did a blood test to check her platelets and it was 56. Not exactly high but we barely made the cut for surgery - above 50.

Her ANC (immunity) fell by half instead of going up! So from a minimal of 1, her ANC dropped back to barely 0.6!!! It sucks big time for me because that would mean her healing process with be lengthen and the risk of infection is much higher...

Anyhow, everything was set up within an hour... And she was wheeled into the Operating Theatre at 2pm...

I haven had much time to process... Functioning on auto mode now... But I'm just glad that we are finally taking her tumor out...

Please pray for a fast and smooth recovery for my Char...

The battle continues...

cyn mommy

A letter addressed to Miracle!

Sunday, January 16, 2011

Today, the tumor grew again... I don't even have to touch to feel it now. It's visible by sight...

Dear God, if the lesson I have to learn here is to 'accept and be at peace', does it mean that once I accept cancer in my life, you will let my baby live? Isn't that what I'm already doing now? I am really more than happy to give up everything and to live with anxiety and fear with NB for every single day of my life. Just let my baby live please.

I won't even complain about anything... I won't hate it, I won't kill it either... Can't we co exist in a peaceful manner?

Both Char's legs are already curved and she can never walk like a normal child, but it's okay. I am still feeling blessed that she has both her legs and she can still move around on her own. Even if it's a limp, I am still contented and deeply grateful.

Her spine is also curved. Needless to say, scolioces is also part of her life. I promise I won't complain and I will try not to cry... I confess that I've been burying myself with grief over her difficult future but I realise that I am being the world's biggest fool.

No matter how challenging the road ahead will be, I will be more than happy to walk it with my girl every single step of the way. We will find joy in everything and we will treasure every single moment. If it's not too much to ask for, whatever plans you may have for Charmaine, can I borrow her for a lifetime? Just one lifetime for her to grow up, to share her miracle with the world and to return the favour to the world who has helped us tremendously.

Please guide me towards the right path so that I can bring Charmaine back to stability. All that I ask for is stability. The NB cells are more than welcome to remain in her body as long as they remember to let her live. Medication for life, a much more different path compared to others are everything that I am willing to live with. We don't even need a normal life like others. It don't matter to me if I have to work doubly hard, or even indefinitely harder. I am happy to do just that! Just as long as you allow Charmaine to live.

Please give me a chance to save my own child. I am literally at wits end now. I prayed. I cried. I begged. Nothing seems to work. Please help me.

Dear God, Buddha and all the mighty ones, heal my char. Please.


My best friend is called Denial

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

I have not been able to talk much... To anyone or anything...

I don't want to talk about cancer... I don't know her prognosis... We never discuss about that with our doctor...

Char is enjoying her days at home since our discharge last Wednesday night. She is always hungry and we are always figuring out what to eat next.

I'm writing this down so that I won't forget it...
On the night where Char was having temperature spikes of over 41 degrees, in between her dizziness and trembles, she suddenly spouted these words:

"Mama, I think Valtor pulled a curse on me. That's why I can't see properly."

Valtor is the Bad Guy in Winx Club Season 4 and Winx Club has been her latest indulgence. Char actually said those words while crying and was in so much discomfort. Of course when I first heard those words, I was in shocked for a few mintues and when I regained my thoughts, I was back to worrying about her so ridiculously high fever and wondering if she was having some hallucination side effects.

However, the next day, we both had a good laugh about her sudden outburst of witchcraft assumptions! It was her first time ever, and looking back now, I thought that was really cute!

So, back to my reality. Like I said, my best friend lately is called Denial. When my best friend is hanging around me, I totally disregard the real battle I am fighting and I can even sing along to the CNY tunes. And I am even able to feel excited about my favourite festive celebration. In the year of 2010, we spent practically every major festival in the hospital. From Chinese New Year to Christmas to New Year's countdown. Hence, I am more desperate in wanting to make it possible for us to at least spend CNY at home for a couple of days this year but our chances look bleak once again... Maybe that's why I am trying to be not too excited abt CNY because I will be doubly disappointed if we have to spend it inpatient again.

When my best friend decides to ignore me, I an often left in a daze, crying and some days, even hating myself. My brain wouldn't stop those bad thoughts from haunting me daily and just some days, I really wish to be able to rip my brain out of my head just so that I can stop thinking once and for all.

Yesterday, I spent an hour talking to a pal who advised me to be at peace. Many a times, I just want to scream and yell back, "What do you know about?!?! My refusal to be at peace is what that has kept me going until today and telling me to be at peace is like telling me to let go and give up. I can't see it any other way. I know everyone of you mean well and truly care. I'm the one who's being ungrateful and spoilt. Did I also mention that I have enough of people asking me "how are you?". Isn't that something obvious enough? How am I? How do you expect me to reply? I have absolutely no wish to vent my frustrations and my anger at my friends but I see myself having lesser and lesser control over my emotions... I'm so afraid that one day, I may just unleash all my fears and anger on a friend who doesn't deserve any of these.. So please forgive me when that day comes... I am trying all my means to hold up and I feel like I may explode soon.

But in the meantime, I wish to deal with all these on my own. Hear me out when I cry aloud but otherwise, please allow me to live in my own little world...

Presently, I'm trying to wreak my brain to figure out if there's anything I can do to even slow this beast down a little... In between that, I'm trying to see how I can fulfil every little wish that Charmaine might have... But it's not easy with her low immunity and the aggressiveness of the disgusting beast.

Needing a miracle now more than ever...

cyn mommy

Scans outcome

Wednesday, January 12, 2011

Cyn Lim
Apologies for not replying to msg and texts. Not really in the mood to talk abt it now. Her scan shows that she didn't respond to ICE. We found a few new spots. She isn't even considered stable. Through all the high dose and it did nothing to even slow it down.

(On behalf of Cyn)

SCANXIETY today, again.

Tuesday, January 11, 2011

I'm sorry I have not been updating but we are still in the hospital...

We were actually discharged on Thursdays afternoon only to reach home and find that Char had spiked another fever soon after. Needless to say, we rushed back to Children's Emergency and Thursday night was a nightmare literally. Her temperature ran up to almost 42 degrees and she was trembling, shivering non stop. I freaked out totally, was scared stiff. I was so helpless and I really thought I was going to lose... It was the most horrific night ever since her diagnosis. Thank God for a wonderful experienced nurse here. Auntie Lek was the one who sailed through the night with me. I trusted her when she told me that we couldn't do much except to help Char ride it through... Until her temp settles...

Anyway, it's almost 2 weeks now, excluding the few hours that we were 'discharged'... Char is definitely feeling better but her bone marrow is still asleep apparently - she still has no immunity and low counts... Had 5 transfusions in barely a week and her platelets are still not holding up! We also had a reaction from one of our platelets transfusion last week. Hives all over. All in all, I'm just so glad last week is over!

Her platelets is dropping at such a fast rate even after transfusions that I'm so scared... I've heard too many stories of having too much chemo poison to such an extent that the body doesn't really recover from it and can no longer make their own platelets... It's just so so so horrible. It's not like our babies don't already have a difficult battle and yet things just keeps getting tougher.

I'm drained, burned out and plain exhausted. Not to mention the fear and paranoia always hanging at the back of my mind. We are in an isolation ward and we don't get to see Jase often enough... That makes all these more painful than it already is.

I have almost nothing to divert my mind from cancer. Char is suffering from separation anxiety and wouldn't allow me out of sight unless to a quick toilet break. Coping in this bed with curtains drawn, most of the times not even aware if it was day or night or the heavy thurderstorm pouring outside. We are living in our little cacoon and I think it's driving me nuts.

My only indulgence is reading. I am now so good that I usually can finish a 600 pages novel in less than 2days. I find relief living amongst vampires, monsters, half bloods,

Charmaine's fever spiked

Friday, January 7, 2011

Barely two hours of discharge, Charmaine went back to hospital 9 hours ago with a high fever. It didnt stop till 41 deg. The first that Charmaine has experienced, as it came with shivering too.

With everyone's blessing, she has fought it once again and the longest nightmare has ended.

Pray that it is not an infection.

Love, Char

Winx Club Season 4

Thursday, January 6, 2011

Anyone knows where to get the DVD for this? Dubbed in English. Subtitles not impt.

Char was discharge for 2 hours this afternoon before heading back to KKH again with a high fever of 40degree.


O+ Platelets and Blood

Charmaine has since been admitted to the hospital over the past few days. Her counts are not sustaining @ the optimal level for discharge. Her last transfusion of plalets by random donor sent her into a serious hives state, and Cynthia has been avoiding that option. Currently, she can only receive CSP, which to my knowledge, means, a single donor donating platelets, and not those cultivated from the donated blood. (which by the time this is posted, she has also subjected to hives from the CSP pack)

Whichever is the case, CSP or not, bloodbank is coming back to us that, there is not enough blood and platelets for Charmaine. It is just not comfortable for us to know this @ the back of our head.

Since Char went into operation last year, we keep a small group of us (O+) active and standby in case she requires. However, from blood to platlets, there seemed to be an increased of requirements by bloodbank. At the minimal, donor must be 50kg, which we are on borderline cases. Healthy platelets will help her alot.

I have enquired but bloodbank and KKH both mentioned, no direct donation for 3rd party. =(

That said, any increase in blood availability will help Charmaine, help other little ones who need it urgently.

Hence, I would like to request from all of you, to donate your platelets (for the hunks out there, healthy, and non-medicated) and blood (for the ladies) as regularly and as much as u can.

If u dont mind being on the "reserved" list, when @ the very last minute, they do not have any supply, and we can call upon u, let us know too.

Charmaine is on blood O+ and she is the ONLY one in the trio with this blood type.
No prize to guess where she get that from and dont bother to guess why the contributor is not contributing to this. =)

Thanks alot everyone, and a new year for a good deed.

Love, Charlene

Thanks for reaching out to us on our plea for blood and platelets donation.

Anytime u are ready, u can head to any blood bank conveniently located in Singapore for the donation.

Edited to add:
As there couldnt be a specific donor programme, all "blood funds" are donated to the common pool. That said, please do not let this stop u from donating. It requires a few days to process the appropriate end product for transfusion and anything more in the pool, means Charmaine can get them faster.

Happy New Year 2011!

Saturday, January 1, 2011

We wrapped up 2011 at KKH inpatient!!!

Her temperature starting creeping up slowly during the last day of 2010. And it went down just when I was going to bring her in. I kept praying, hoping that we will at least get to count down with Jase before her fever surfaces. Alas, just not meant to be.

Anyhow, we got into KKH at abt 10pm. And I was extremely impressed with the efficiency of the entire process. From checking in at A&E to being seen by a Doctor, to getting us admitted at our inpatient bed, the entire process took slightly over an hour!!! Unlike our previous records of waiting more than 3 hours at times! However, the entire episode that could have been their best ever was ruined when the nurse used a wrong size needle on Charmaine! :-(

Char has never winced whenever she is getting accessed. She would
clutch fist tight and bear with it. But when she started complaining of pain even after the needle was put in, I knew something was amiss. And when I saw at least half an inch of needle jutting out of her body, I knew something was just wrong!!! Argh. They insisted the needle was already in placed and that it was the right size but to me, we had never had pain or needle jutting out like that! I was worried that it wasn't secured at all! They even claimed that maybe she has lost so much weight! Absurd! Finally they came back and applogised. Said they used a longer needle. DUH. What else can I say.

Just gotta pray that nothing happens. Else who is going to be responsible!

Char also has her lowest ever platelet and haemoglobin numbers. Single digit of 6. Really scary. No wonder she is so lethargic! I knew that her blood must be low but was really surprised that it's that low! Not a good sign really. Her body's immune is getting weaker. She needs a break!!! Please pray that 2011 will be a good year for Char! So that she can stay away from chemo and enjoy her normal

The past year has been a remarkable journey filled with what seems like more downs and ups but at the end of the day, what matters most is the fact that I am crossing into 2011 with Jase and Char by my side...
Happy New Year everyone!

I am alittle disappointed that I won't be able to send Jase to Sch on his first day of embarking into his life of independence. But I know that my son will not have a single problem adjusting! He is the most adaptable kid I've ever seen and I couldn't be prouder.

cyn mommy
Feisty Princess Charmaine. Design by Pocket