We were discharged on Sunday afternoon after waiting forever for our medications and fentanyl patches!
Anyhow, Char is doing generally ok, except for the nausea, vomiting, diarrehea and fatigue.
I have been seriously squeezing every cells in my brain trying to rationalize this ---
"I AM POURING ALL THESE POISON INTO MY BABY'S BODY, KILLING ALL HER HEALTHY CELLS AND YET THE CANCER CELLS SURVIVE?!?! HOW IS IT EVEN RATIONALLY POSSIBLE?!?!?!?!"
I wish that someone can just turn themself into a teeny tiny person and just travel into her body to switch off a button and just kill all the cancer cells!!!
As you can see, I am highly strung!
I feel like an atomic bomb waiting to explode any minute.
I want to cry my heart out and make all these go away...
Pls just let this nightmare go away... I want to wake up and hear the wonderful news that my baby girl is NED again!!!
Scanxiety. Stress. Fear. Anger. Frustrations. Desperation.
I need to dig much deeper into my soul this week and it's still not helping!!!
I can't find my happiness, my smiles, my laughters, my joy, my contentment and I can feel my vomiting reflux is coming back again.
Well, at least I tell myself now I am in it together with Char, puking our way to some fun, maybe?!?!?
Dear Buddha, hear my pleads and my cries, please have mercy on my dearest Charmaine. PLEASE heal Charmaine so that she can return to her normal life of growing up happily like everyone else. I believe in you and I believe in miracles.
Love,
cyn mommy
We are having our afternoon tea party at KKH inpatient!
Saturday, February 26, 2011
Jase is here, Char and me are extremely happy to have him here with us! This is how Jase will remember his growing up childhood years; all the bus trips, MRT trips he takes with his Gong Gong to KKH to deliver breakfast and dinner for his sister. Albeit somewhat not an ideal or typical way to spend weekends but we do have our UNO games, siblings rivalry and movies time together! And that's what matters at the end of the day! So, here we are with tons of food, fruits and drinks to cater to Char's occasional bouts of hunger pang and pray that it's something she finds appetizing.
On the medical front, char spiked a fever on Thursday. Nothing surprising really. But that explains why we are inpatient! Waiting for blood culture results and hopefully no infections so we can get out of the hospital soon! Not that we don't like it but nowhere beats being at home!
As for other aspects of our medical situation, let's just say I am totally freaked out. We have scans the following week and the scanxiety is driving me nuts. I am literally on a nervous breakdown and YES I am trying so hard to put on my fake brave front for my little ones. Her latest series of blood tests have revealed that her tumor markers are once again elevated. I am just heart broken, devastated and at a total loss. :-( we are out of options in Singapore and I am so scared, so frustrated with our no options in Singapore shld the news be one I don't wish to hear. I want to keep everyone at home for treatment but Singapore has almost nothing. :-( I keep telling myself not to think about it now and just live, laugh and treasure every moment but the painful truth is my fear and anxiety is eating away at my faith and courage...
I need your help. Please, please pray harder, louder and longer for us. I am holding on desperately to hope and praying that some miracle is already happening right now. Please heal my child. My innocent, helpless child... And every child who simply doesn't deserve any of these suffering, pain and tears. They ALL deserve to be by the side of their mothers!!!
Thank you so much for being by our sides... I truly appreciate it and I don't know how to ever repay all the love that have been showered upon us...
Love,
Cyn mommy
On the medical front, char spiked a fever on Thursday. Nothing surprising really. But that explains why we are inpatient! Waiting for blood culture results and hopefully no infections so we can get out of the hospital soon! Not that we don't like it but nowhere beats being at home!
As for other aspects of our medical situation, let's just say I am totally freaked out. We have scans the following week and the scanxiety is driving me nuts. I am literally on a nervous breakdown and YES I am trying so hard to put on my fake brave front for my little ones. Her latest series of blood tests have revealed that her tumor markers are once again elevated. I am just heart broken, devastated and at a total loss. :-( we are out of options in Singapore and I am so scared, so frustrated with our no options in Singapore shld the news be one I don't wish to hear. I want to keep everyone at home for treatment but Singapore has almost nothing. :-( I keep telling myself not to think about it now and just live, laugh and treasure every moment but the painful truth is my fear and anxiety is eating away at my faith and courage...
I need your help. Please, please pray harder, louder and longer for us. I am holding on desperately to hope and praying that some miracle is already happening right now. Please heal my child. My innocent, helpless child... And every child who simply doesn't deserve any of these suffering, pain and tears. They ALL deserve to be by the side of their mothers!!!
Thank you so much for being by our sides... I truly appreciate it and I don't know how to ever repay all the love that have been showered upon us...
Love,
Cyn mommy
Cycle #18 and still holding on to HOPE
Tuesday, February 22, 2011
We need a miracle and we need it now. So badly. Please keep those prayers coming in for us. I read somewhere that collective thoughts and energy is powerful and I have no doubts that all your prayers and thoughts have kept my little girl in the good fight continuously until now... So please keep it coming. Positive vibes!
A little update about us...
We started Cycle #2 of our new protocol last Friday with 90 min infusion Avastin and admitted Monday morning for 5 days of chemo. This is our cycle #18 and we are still fighting. If you recall, we had a rough time with our first cycle, had to deal with lots of pain, loss of sleep, nausea, vomitting and loss of appetite. As such, I am definitely wary and anxious this round. I'm praying, keeping my fingers crossed for Char to have more comfort but for the drug to work as effectively as possible in bringing her disease under control.
We had a good week last week. I am so grateful, thankful and blessed. Both Jase and Char got to cycle over the weekend and we had lots of fun! I don't know what lies in the future ahead. All I know is that it is going to be tough. The odds for a cure for my little girl is sadly little and low but I continue to hold on to whatever hope there is I can grab onto. Char, my dearest is blissfully unaware of the uphill mountain we are climbing and continues to be the ever sweet, feisty princess she has always been. She has dreams of starting Pri 1 next year, making friends and can't wait to learn, sing and dance and conquer the world! Her smiles, her never give up attitude and her abilitiy to live each day to the fullest is what that have enabled me to remain strong, and inspires me to live out each day happily, add one more day to my treasure chest and leave tomorrow's worries to tomorrow.
Our scans are scheduled for the second week of March and based on the results, I will have some huge decisions to make. My birthday wish for this year is to finally hear some positive news from the scans!!! Dear Buddha, please continue to watch over my Char and bless her with a miraculous recovery from this disease.
Finally, I like to apologise for not updating as often. I guess writing no longer has that therapuetic effect on me and instead, it just reminds me of my tears. As the saying goes, no news is good news with us. Our good news is simple, just a day waking up to sunshine, minimal pain and discomfort, and going about the daily routine of eat, sleep and be boring! Each day that we spend being together, doing nothing, complaining and whining is each additional day of gratitude and great bliss for me! I wake up everyday repaying thanks for yesterday and praying for another yesterday today.
Last but not least, please keep all those much needed prayers coming in. They must be working for us to be enjoying so many days of joy and bliss at home. But we need more for our miracle to work! For our chemo drugs and Avastin to work effectively on killing the cancer cells, keeping them under control and for us to be able to remain on this option for as long as possible!!! For Char to have no pain and no discomfort so that she can enjoy her days like a normal 5 year old!
From the bottom of my heart, I say a thousand word of thanks. I appreciate all the comments, all our silent supporters and all your love for my family, especially for my feisty little princess.
Love,
cyn mommy
A little update about us...
We started Cycle #2 of our new protocol last Friday with 90 min infusion Avastin and admitted Monday morning for 5 days of chemo. This is our cycle #18 and we are still fighting. If you recall, we had a rough time with our first cycle, had to deal with lots of pain, loss of sleep, nausea, vomitting and loss of appetite. As such, I am definitely wary and anxious this round. I'm praying, keeping my fingers crossed for Char to have more comfort but for the drug to work as effectively as possible in bringing her disease under control.
We had a good week last week. I am so grateful, thankful and blessed. Both Jase and Char got to cycle over the weekend and we had lots of fun! I don't know what lies in the future ahead. All I know is that it is going to be tough. The odds for a cure for my little girl is sadly little and low but I continue to hold on to whatever hope there is I can grab onto. Char, my dearest is blissfully unaware of the uphill mountain we are climbing and continues to be the ever sweet, feisty princess she has always been. She has dreams of starting Pri 1 next year, making friends and can't wait to learn, sing and dance and conquer the world! Her smiles, her never give up attitude and her abilitiy to live each day to the fullest is what that have enabled me to remain strong, and inspires me to live out each day happily, add one more day to my treasure chest and leave tomorrow's worries to tomorrow.
Our scans are scheduled for the second week of March and based on the results, I will have some huge decisions to make. My birthday wish for this year is to finally hear some positive news from the scans!!! Dear Buddha, please continue to watch over my Char and bless her with a miraculous recovery from this disease.
Finally, I like to apologise for not updating as often. I guess writing no longer has that therapuetic effect on me and instead, it just reminds me of my tears. As the saying goes, no news is good news with us. Our good news is simple, just a day waking up to sunshine, minimal pain and discomfort, and going about the daily routine of eat, sleep and be boring! Each day that we spend being together, doing nothing, complaining and whining is each additional day of gratitude and great bliss for me! I wake up everyday repaying thanks for yesterday and praying for another yesterday today.
Last but not least, please keep all those much needed prayers coming in. They must be working for us to be enjoying so many days of joy and bliss at home. But we need more for our miracle to work! For our chemo drugs and Avastin to work effectively on killing the cancer cells, keeping them under control and for us to be able to remain on this option for as long as possible!!! For Char to have no pain and no discomfort so that she can enjoy her days like a normal 5 year old!
From the bottom of my heart, I say a thousand word of thanks. I appreciate all the comments, all our silent supporters and all your love for my family, especially for my feisty little princess.
Love,
cyn mommy
A blissful start to the year of Rabbit
Tuesday, February 8, 2011
Hello everyone,
Its already the year of the Rabbit! 2 years to us battling and I am very grateful to still be fighting this war, which I termed it dearly as my very own WWIII. Although its as physical as it gets, more often than not, I feel the physiological aspects are my biggest enemy.
My fears, anxiety, desperation, depression, disappointments and scanxiety drive me nuts and make me lose my faith, my hope, my drive and my belief. At the end of the day, I am just left with nothing. Or rather, I feel that way - that I have exhausted all my means, used up every ounce of my energy and expended all my determination... I am drained and empty.
But the very sight of Charmaine is the biggest reminder to myself that I still have everything. She's the only thing, other than Jase that matters in this war and she is everything to me.
Nevertheless, I am only human. I will always wonder why arent we one of the lucky ones? Why isnt my baby one of the lucky ones responding well to treatment? Whenever I hear of friends travelling for vacation, I would be envious of their happiness. It is exceptionally hard when I see other families with innocent and happy kids doing mundane and simple things, like running around at the playground or just going out for a simple dinner. I miss those days terribly. I miss all these simple pleasures of life. I miss worrying over normal things such as having enough money to pay for bills or if the kids are doing well in school. I miss being normal. I find myself occasionally looking back towards the past and re-living those moments over in my mind, just to remember how it once felt. The memory is getting more vague as time goes by and I just wish I could capture those emotions the way we freeze a moment in time through pictures. All the mental torment that my mind has to go through on a daily basis isnt helping much with keeping memories because the way I cope is to block out and forget. While I forget the harsh moments, I also have to forget the happy ones too. Another NB mommy in US coined the term "Collateral Damage".
People often ask me: "How are you coping?" I honestly dont know how to answer. Quite frankly, I myself dont know how am I coping? Maybe I would need an expert to sit down and observe me for a day and put me in a certain 'stage' or a certain 'phase' of whatever medical term there is.
We are living each day like an average person, as 'normal' as can be. We sleep, eat and wake up and repeat the cycle with minor surprises everyday. The side effects of the treatment are taking a heavy toll on Charmaine and our 'average' day isnt quite your average day. Generally, we wake up and because of the pain in Charmaine's leg, she cant move around like a normal 6 year old kid. Her leisure is laying on bed, watching her Winx Club DVDs, counting down to the time Jase comes back from school and continue watching more episodes with Jase. In between those moments, there would be the bickering over being too squeezy, or Jase disturbing her, or Jase hurting her when he touched her... Complains that usually have me staring at them, with the "No fighting" warning.
And all the while, Charmaine is coping with the constant pain on her right knee. This chemo is known to cause diarrhea and that is the other pain that Char is having to deal with on a daily basis. Her appetite has also been very poor in the past 2 weeks. She has already lost almost 2kgs since we returned in December. She feels the hunger pangs but the vomiting and nausea is making it very hard for her to stomach the food. And that adds on to her frustration and sadness. She asked me: "Why is it when I see food, I am not hungry and when I dont see food, I get hungry? But when I am hungry, I cant eat?"
She is always tired and occasionally feeling dizzy. Weak from the lack of food intake and weak from pain. The oral morphine is probably also doping her to a certain extent but she finds it difficult to sleep with the pain in the leg and the pain in her tummy.
So THAT is Charmaine's average day at home.
I live my life daily, always on the alert for the next increase in pain, the next dose of medication, the next run for puke bags, or just laying on bed besides Char. She feels very uncomfortable with me out of her sight and is constantly calling out to me even when I am showering...
I read a quote about 2 week's ago that has eased the fear and pain in my heart a little and taught me to remember to see things from a different perspective in order to carry on...
I continue to be grateful each morning I wake up with Charmaine by my side. And I cannot be happier to be able to spend this Reunion Dinner at home with my family by my side. Although Charmaine was too sick to join us for the whole dinner, she managed to pull herself through the Lo Hei with us and went back to bed to rest.
We also had to admit to KKH on Thursday night for an 90mins infusion on Friday morning. However, all in all, it was a wonderful Chinese New Year for me. I am truly blessed with many tiny blessings each day.
I hope everyone had a blissful CNY like us, counting the tiny blessings each day, despite the challenges we are thrown with daily.
Have a BLESSED RABBIT YEAR 2011.
Love,
Cyn mommy
Its already the year of the Rabbit! 2 years to us battling and I am very grateful to still be fighting this war, which I termed it dearly as my very own WWIII. Although its as physical as it gets, more often than not, I feel the physiological aspects are my biggest enemy.
My fears, anxiety, desperation, depression, disappointments and scanxiety drive me nuts and make me lose my faith, my hope, my drive and my belief. At the end of the day, I am just left with nothing. Or rather, I feel that way - that I have exhausted all my means, used up every ounce of my energy and expended all my determination... I am drained and empty.
But the very sight of Charmaine is the biggest reminder to myself that I still have everything. She's the only thing, other than Jase that matters in this war and she is everything to me.
Nevertheless, I am only human. I will always wonder why arent we one of the lucky ones? Why isnt my baby one of the lucky ones responding well to treatment? Whenever I hear of friends travelling for vacation, I would be envious of their happiness. It is exceptionally hard when I see other families with innocent and happy kids doing mundane and simple things, like running around at the playground or just going out for a simple dinner. I miss those days terribly. I miss all these simple pleasures of life. I miss worrying over normal things such as having enough money to pay for bills or if the kids are doing well in school. I miss being normal. I find myself occasionally looking back towards the past and re-living those moments over in my mind, just to remember how it once felt. The memory is getting more vague as time goes by and I just wish I could capture those emotions the way we freeze a moment in time through pictures. All the mental torment that my mind has to go through on a daily basis isnt helping much with keeping memories because the way I cope is to block out and forget. While I forget the harsh moments, I also have to forget the happy ones too. Another NB mommy in US coined the term "Collateral Damage".
People often ask me: "How are you coping?" I honestly dont know how to answer. Quite frankly, I myself dont know how am I coping? Maybe I would need an expert to sit down and observe me for a day and put me in a certain 'stage' or a certain 'phase' of whatever medical term there is.
We are living each day like an average person, as 'normal' as can be. We sleep, eat and wake up and repeat the cycle with minor surprises everyday. The side effects of the treatment are taking a heavy toll on Charmaine and our 'average' day isnt quite your average day. Generally, we wake up and because of the pain in Charmaine's leg, she cant move around like a normal 6 year old kid. Her leisure is laying on bed, watching her Winx Club DVDs, counting down to the time Jase comes back from school and continue watching more episodes with Jase. In between those moments, there would be the bickering over being too squeezy, or Jase disturbing her, or Jase hurting her when he touched her... Complains that usually have me staring at them, with the "No fighting" warning.
And all the while, Charmaine is coping with the constant pain on her right knee. This chemo is known to cause diarrhea and that is the other pain that Char is having to deal with on a daily basis. Her appetite has also been very poor in the past 2 weeks. She has already lost almost 2kgs since we returned in December. She feels the hunger pangs but the vomiting and nausea is making it very hard for her to stomach the food. And that adds on to her frustration and sadness. She asked me: "Why is it when I see food, I am not hungry and when I dont see food, I get hungry? But when I am hungry, I cant eat?"
She is always tired and occasionally feeling dizzy. Weak from the lack of food intake and weak from pain. The oral morphine is probably also doping her to a certain extent but she finds it difficult to sleep with the pain in the leg and the pain in her tummy.
So THAT is Charmaine's average day at home.
I live my life daily, always on the alert for the next increase in pain, the next dose of medication, the next run for puke bags, or just laying on bed besides Char. She feels very uncomfortable with me out of her sight and is constantly calling out to me even when I am showering...
I read a quote about 2 week's ago that has eased the fear and pain in my heart a little and taught me to remember to see things from a different perspective in order to carry on...
"Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic? Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard? No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish."
-Robert Brault
I continue to be grateful each morning I wake up with Charmaine by my side. And I cannot be happier to be able to spend this Reunion Dinner at home with my family by my side. Although Charmaine was too sick to join us for the whole dinner, she managed to pull herself through the Lo Hei with us and went back to bed to rest.
We also had to admit to KKH on Thursday night for an 90mins infusion on Friday morning. However, all in all, it was a wonderful Chinese New Year for me. I am truly blessed with many tiny blessings each day.
I hope everyone had a blissful CNY like us, counting the tiny blessings each day, despite the challenges we are thrown with daily.
Have a BLESSED RABBIT YEAR 2011.
Love,
Cyn mommy
Happy Lunar New Year to All
Saturday, February 5, 2011
Happy rabbit new year to all our friends and readers! I hope you've enjoyed yourselves these few days gorging on CNY goodies, catching up with extended families and friends and receiving/ giving lots of ang pows.
Charmaine is enjoying CNY this year far from the hospital. Yay! She's so happy she called me and possibly the other of her adult friends to wish us:
恭喜发财 (gong xi fa cai)
红包拿来 (hong bao na lai)
Lots of love
Jolene
Charmaine is enjoying CNY this year far from the hospital. Yay! She's so happy she called me and possibly the other of her adult friends to wish us:
恭喜发财 (gong xi fa cai)
红包拿来 (hong bao na lai)
Lots of love
Jolene
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