Hey everyone,
We were discharged on Boxing Day afternoon and is now home recovering.
Charmaine had a meltdown on Sunday night after discharge which got me really down as well.
She suddenly starting crying: " I want my hair, I want to be normal
like you and everyone in the family. I want to gonto school, run and hop like kor kor, have many friends..."
I tried my very best to tell her that everything will be good, she will be able to go to school and have many friends... Like everyone else... However, I found myself choking with tears. I couldn't lie but I couldn't tell her that she can never, run or hop like any other kid, not to mention walking.
As she gets older everyday, she becomes more aware of her condition and her differences... I try my best to over compensate for everything that she is missing out every single day of her life. Even all my friends. Everyone of you.
I guess there will always be days when it's harder to focus on what we have rather than what we are lacking. As I look around me, the many toddlers playing and running around, even the scenes of a family walking simply on the streets can make me tear up. All I want is something simple and yet it just gets further from me. I honestly can't imagine how much more depressing it is for her...
Nevertheless, we continue to hope, to pray and keep the faith. We continue to pick ourselves up after the numerous meltdowns, after the numerous episodes of crying. Because the only way we know is forward.
Love,
cyn mommy
The Log Cakes Arrived....
Saturday, December 25, 2010
Just as arranged, the cakes by Icing Room has arrived in KKH for the kids to decorate for their loved ones to eat. Charmaine and Jase were thrilled to see the white cream based log-cakes with colourful creams tubes to decorate the cakes.
It started off in finding ways to make our princess happy during this painful chemo and it became hours of fun for Charmaine, forgetting the pain this chemo brings to her.
Kids love arts and craft, loves handiwork. Our dearest princess is definitely one of them. Love how she spend efforts in thinking who to decorate the cake to, and how she will decorate. Love how all these made her forget the pain she is going through, forget that she is in war with the monster in her. We probably would not know why, decorating a cake brings so much joy in her. But all we know is, it brings a smile to our little girl, who has been vomitting, fever, refusing to eat over the last few days.
Thank u Breadtalk, thank u Icing Room, thank u delivery van, and thank u Jessie and team for their swift responses and getting this request up in such a short time. Thank you all, for bringing strength to our little one, when she badly needs a happy diversion of energy.
Merry Xmas all, and pray for Charmaine smoothy recovery on her last day chemo! =)
^^ Happy Holidays!
Love, Charlene
It started off in finding ways to make our princess happy during this painful chemo and it became hours of fun for Charmaine, forgetting the pain this chemo brings to her.
Kids love arts and craft, loves handiwork. Our dearest princess is definitely one of them. Love how she spend efforts in thinking who to decorate the cake to, and how she will decorate. Love how all these made her forget the pain she is going through, forget that she is in war with the monster in her. We probably would not know why, decorating a cake brings so much joy in her. But all we know is, it brings a smile to our little girl, who has been vomitting, fever, refusing to eat over the last few days.
Thank u Breadtalk, thank u Icing Room, thank u delivery van, and thank u Jessie and team for their swift responses and getting this request up in such a short time. Thank you all, for bringing strength to our little one, when she badly needs a happy diversion of energy.
Merry Xmas all, and pray for Charmaine smoothy recovery on her last day chemo! =)
^^ Happy Holidays!
Love, Charlene
Day 3 - No surprises
Thursday, December 23, 2010
We had a rough rough day yesterday.
One moment she was perfectly herself, hungry, cheeky and screaming, getting all excited over her Winx Club DVDs, all of a sudden, she starting screaming out in pain and crying uncontrollably. I freaked out immediately. I asked where was the pain ad she said it was her right leg but she couldn't tell beyond that. Pain is nothing new to us but we all know that her threshold for pain is extremely high. Off hand, I couldn't even recall any other times where she was crying like that except the murderous attempt we did to her while pulling out her temp line post stem cells harvesting.
That was around noon time and since than, we have been dealing with all the side effects of the chemo, the entire day and night. I gave her a dose of panadol for pain relief; she fell asleep after abt 15mins of crying and woke up 20mins later again, with all the pain and crying. I immediately know that she needed more pain relief med. Had to leave her crying, ran out to the nurse to get the doctor to prescribe coedine for her. I have it with me but needed the doctor's approval to give. Thankfully, Dr Khawn left her lunch half eaten to rush up and examine her. With the coedine in, she finally managed to get a good sleep.
I had to wake her up 2hrs later to pee (it's what we have been doing since we started ICE, every 2hrs daily) and miraculously, she woke up feeling good, with no pain!!! YEAH! To watch your own child in that kind of pain is what no parent should have to experience ever! But I just focused on the fact that we resolved the pain and that's all that matter!
Of course, while she was not in pain, she was nausea, couldn't eat and drink pretty much the whole day. But that's no surprise to me. I had expected it to hit her hard and bad, just was taken aback by the excruciating pain which was so sudden. And of course, she is very very lethargic, not herself really. She tries constantly to pull herself together to want to play alittle, to watch a little DVD but within 5minutes, she would feel the energy draining from her.
By night, her fever spiked. She threw up numerous times. Changed PJs, changed bedsheets, and change it again and again. My first concern was that our Day 3 chemo was just halfway done with one more drug to start at 12midnight. The standard protocol is to stop it immediately but if you had been following our journey, you would know that I'm not comfortable with any disruption to her chemo schedule. So while dealing with all the nausea, throwing up and fever, I knew that I had to convince the system and overcome the protocols. I must say that I'm grateful, deeply grateful to the doctors here which are definitely becoming more open in listening to every child's unique situation rather than a number in their many cases. It didn't take me long and all of us reached a consensus to continue the day's chemo, do cultures, start antibiotics, and add another anti vomit medicine which she has responded well before. Char has coincidentally always been on drugs that skips one or 2 levels of the protocols the doctors are trained in and hence, I am constantly being a petulant mom, insisting on using what works for her rather than what the protocol calls for. I know I must be quite the irritant pest, but I had to do what's best for Char. I feel bad always though, and wonders if I am one of the blacklisted moms here. Nevertheless, blacklisted or not, it will not deter me from fighting the protocols or the systems. It's never a personal thing but just a firm belief that my baby isn't a number, but an unique individual that as her mom, having walked together the journey, I know what works for her.
And it works! With an IV Lorezapem added, she went back to sleep and she woke up this morning feeling good again. It seems like we have kept the nausea at bay and that's great! One day at a time. Keep calm and move on. She isn't herself entirely but that's expected. Still tired and having no appetite, but we'll deal with that and the fever.
With the fever that's not coming down, discharge on Xmas day is impossible but it's Ok! As long as she is well!
All I want for Christmas is... to spend it together as a family. Doesn't matter where. :-)
Love,
cyn mommy
One moment she was perfectly herself, hungry, cheeky and screaming, getting all excited over her Winx Club DVDs, all of a sudden, she starting screaming out in pain and crying uncontrollably. I freaked out immediately. I asked where was the pain ad she said it was her right leg but she couldn't tell beyond that. Pain is nothing new to us but we all know that her threshold for pain is extremely high. Off hand, I couldn't even recall any other times where she was crying like that except the murderous attempt we did to her while pulling out her temp line post stem cells harvesting.
That was around noon time and since than, we have been dealing with all the side effects of the chemo, the entire day and night. I gave her a dose of panadol for pain relief; she fell asleep after abt 15mins of crying and woke up 20mins later again, with all the pain and crying. I immediately know that she needed more pain relief med. Had to leave her crying, ran out to the nurse to get the doctor to prescribe coedine for her. I have it with me but needed the doctor's approval to give. Thankfully, Dr Khawn left her lunch half eaten to rush up and examine her. With the coedine in, she finally managed to get a good sleep.
I had to wake her up 2hrs later to pee (it's what we have been doing since we started ICE, every 2hrs daily) and miraculously, she woke up feeling good, with no pain!!! YEAH! To watch your own child in that kind of pain is what no parent should have to experience ever! But I just focused on the fact that we resolved the pain and that's all that matter!
Of course, while she was not in pain, she was nausea, couldn't eat and drink pretty much the whole day. But that's no surprise to me. I had expected it to hit her hard and bad, just was taken aback by the excruciating pain which was so sudden. And of course, she is very very lethargic, not herself really. She tries constantly to pull herself together to want to play alittle, to watch a little DVD but within 5minutes, she would feel the energy draining from her.
By night, her fever spiked. She threw up numerous times. Changed PJs, changed bedsheets, and change it again and again. My first concern was that our Day 3 chemo was just halfway done with one more drug to start at 12midnight. The standard protocol is to stop it immediately but if you had been following our journey, you would know that I'm not comfortable with any disruption to her chemo schedule. So while dealing with all the nausea, throwing up and fever, I knew that I had to convince the system and overcome the protocols. I must say that I'm grateful, deeply grateful to the doctors here which are definitely becoming more open in listening to every child's unique situation rather than a number in their many cases. It didn't take me long and all of us reached a consensus to continue the day's chemo, do cultures, start antibiotics, and add another anti vomit medicine which she has responded well before. Char has coincidentally always been on drugs that skips one or 2 levels of the protocols the doctors are trained in and hence, I am constantly being a petulant mom, insisting on using what works for her rather than what the protocol calls for. I know I must be quite the irritant pest, but I had to do what's best for Char. I feel bad always though, and wonders if I am one of the blacklisted moms here. Nevertheless, blacklisted or not, it will not deter me from fighting the protocols or the systems. It's never a personal thing but just a firm belief that my baby isn't a number, but an unique individual that as her mom, having walked together the journey, I know what works for her.
And it works! With an IV Lorezapem added, she went back to sleep and she woke up this morning feeling good again. It seems like we have kept the nausea at bay and that's great! One day at a time. Keep calm and move on. She isn't herself entirely but that's expected. Still tired and having no appetite, but we'll deal with that and the fever.
With the fever that's not coming down, discharge on Xmas day is impossible but it's Ok! As long as she is well!
All I want for Christmas is... to spend it together as a family. Doesn't matter where. :-)
Love,
cyn mommy
Xmas thanks...
Thanks to those who dropped in their kind notes, and offered their time and heart for the requests made in Xmas seasons. Thanks to those who have never forgotten to pray for our Charmaine good health. Thanks Ling Lee, Sheau Wen and friends in the preparation and of course, to Jessie from Breadtalk for readily agreeing on the cake-decoration session.
Some updates:
@ midnight: First Fever 38.6 throwing up, nausea, no intake of food. We have not even completed Day 3 chemo. At risk of having to stop the chemo running at 12midnight. :-( got alot to convince tonight... I wldnt be surprised that she is already neutropenic.
Love, Charlene
Some updates:
@ midnight: First Fever 38.6 throwing up, nausea, no intake of food. We have not even completed Day 3 chemo. At risk of having to stop the chemo running at 12midnight. :-( got alot to convince tonight... I wldnt be surprised that she is already neutropenic.
Love, Charlene
The Spirit of Joy, Love and Magic!
Tuesday, December 21, 2010
Day 1 of ICE chemo - loads of laughters, eating and of course, pressies from bed 12, Char's style! Despite us having left for months and only recently returned, Char fits right in this time around, with a loving and supportive Jase who insists on coming to the ward every single day from morning till night. I am proud and comforted to say: "Thank you Santa, I truly feel the Christmas spirit here, in spite of it all."
The celebration of love - I feel and see it in the 2 kids gifted to me. I feel the support of you, many of you, I do. Both right here in Singapore, and 16500km away in another continent. Old friends, new friends, 'comrades at war', friends yet to be made, we are so loved. Thank you.
Magic - Isnt it magical that love always creeps in when you need it most?
I lost count of days, months and years. My calendar is marked with scans, blood tests, chemotherapy and more scans, more blood tests and more chemotherapy. Until yesterday, someone said to me, "2011 will be yet the most challenging year in your life, in a way you can never fathom." Seeing the big picture is a skill I've trained myself to switch off 2 years ago. Hence, it didn't occur to me to think that way. My life is filled with little tiny steps. If anything, the past 3 months of my life, this is the one skill I've been taught too many times, and through all the pain staking lessons, I found out that I actually learned. Especially when the big picture was put forth to me yesterday.
I am aware of the reality but I still want to grab on to the hope, to the wavering faith, to the magic of Christmas that miracles are possible. Against all odds, against all my negativity, against all your 'kind hearted efforts of asking me to be prepared', the only thing keeping me alive is hope. Please, please please spare me all your kind hearted intentions, I appreciate it BUT I'm not ready to give up my battle. (The last 2 days of hearing such kind hearted intentions shocked and hurt me tremendously. So please spare me such words because it would only bring nothing but hurt, pain and tears. Which honestly, I have no lack of.
Yes, 2011 will be nothing I've ever imagined but it will just mean that I will fight like I've never done before. :-) The mountains to climb will be huge and the path will be full of twists and turns. I will continue to trip and fall, I will probably hurt myself continously and maybe cry an even bigger ocean of tears... The point is, my war isn't over and I will not stop fighting ever, with or without my faith. And if I have to live the rest of my life fighting this war, I would be glad to! Despite of me being drained completely and wanting to just escape from all these pain, I just won't give up! And if it's a pain and fear I have to live with my whole life, at the expense of me giving up everything, I'm more than happy to be in this constant fight, fear and going in and out of light and darkness, despair and hope, love and sadness, disappointments and elation roller coaster ride! AS LONG AS CHAR IS WITH ME, bring it on anytime. :-)
It's already Christmas here with the feisty family!!! Merry Christmas everyone!!!
Love,
Cyn mommy
PS: YEAH!!! I did it right??? I finally wrote an uplifting entry, did I not?!?!?
The celebration of love - I feel and see it in the 2 kids gifted to me. I feel the support of you, many of you, I do. Both right here in Singapore, and 16500km away in another continent. Old friends, new friends, 'comrades at war', friends yet to be made, we are so loved. Thank you.
Magic - Isnt it magical that love always creeps in when you need it most?
I lost count of days, months and years. My calendar is marked with scans, blood tests, chemotherapy and more scans, more blood tests and more chemotherapy. Until yesterday, someone said to me, "2011 will be yet the most challenging year in your life, in a way you can never fathom." Seeing the big picture is a skill I've trained myself to switch off 2 years ago. Hence, it didn't occur to me to think that way. My life is filled with little tiny steps. If anything, the past 3 months of my life, this is the one skill I've been taught too many times, and through all the pain staking lessons, I found out that I actually learned. Especially when the big picture was put forth to me yesterday.
I am aware of the reality but I still want to grab on to the hope, to the wavering faith, to the magic of Christmas that miracles are possible. Against all odds, against all my negativity, against all your 'kind hearted efforts of asking me to be prepared', the only thing keeping me alive is hope. Please, please please spare me all your kind hearted intentions, I appreciate it BUT I'm not ready to give up my battle. (The last 2 days of hearing such kind hearted intentions shocked and hurt me tremendously. So please spare me such words because it would only bring nothing but hurt, pain and tears. Which honestly, I have no lack of.
Yes, 2011 will be nothing I've ever imagined but it will just mean that I will fight like I've never done before. :-) The mountains to climb will be huge and the path will be full of twists and turns. I will continue to trip and fall, I will probably hurt myself continously and maybe cry an even bigger ocean of tears... The point is, my war isn't over and I will not stop fighting ever, with or without my faith. And if I have to live the rest of my life fighting this war, I would be glad to! Despite of me being drained completely and wanting to just escape from all these pain, I just won't give up! And if it's a pain and fear I have to live with my whole life, at the expense of me giving up everything, I'm more than happy to be in this constant fight, fear and going in and out of light and darkness, despair and hope, love and sadness, disappointments and elation roller coaster ride! AS LONG AS CHAR IS WITH ME, bring it on anytime. :-)
It's already Christmas here with the feisty family!!! Merry Christmas everyone!!!
Love,
Cyn mommy
PS: YEAH!!! I did it right??? I finally wrote an uplifting entry, did I not?!?!?
Insanity lives within me
Saturday, December 18, 2010
We found a lump on her left thigh yesterday.
I'm heart broken and I'm scared mad. I don't know what else to say.
I cannot stop crying. One moment I'm ok. One moment I'm just incredibly weak, I honestly feel that my body can just give way and crumble any minute, any second. I'm just barely functioning but I am already using every ounce of energy I can find to breathe and stay awake, stay sane... Stay alive...
When I first heard and felt the lump myself yesterday. I was emotionless.
But today, the reality has hit me real hard. I wake up and I find myself tearing non stop. I was crying when I was brushing my teeth. I was crying when I went to buy bread, I'm still crying when I'm eating.
Char kept asking if I'm ok. Why do I look like I'm crying. I said I'm sick, I have a running nose, I have a headache... I don't know what else to say...
I'm not ok and I don't know how to be okay. If you bump into me or see me, pls don't ask if I'm ok because obviously I'm not. Don't ask me how or why or what because I'm done explaining and I don't want to relive my fears time and again, by narrating our situation non stop.
We are admitting on Monday to start the ICE chemo. Our Chinese New Year this year was spent at Ward 76, so will our Christmas. If you feel like doing something for Char, feel free to drop by with a Xmas gift for her. I keep telling myself it's ok to miss a Xmas as long as we get many more to come.
I try to distract myself with what I can do to make everything better for her. I know she misses Santa and thought that Santa only visits in NYC where kids are spoilt with gifts every other day in December... Know of any Santas in Singapore? Pls let me know. I would very much like to ask if I can find a Santa to bring gifts to kids spending their Xmas inpatient.
It's time to get into battle mode again. Not like the war has ever stopped for us. But I won't give up. I simply won't. Because she has so much life and is still my cheeky baby dreaming of school and having long hair.
ICE is very tough, hopefully it will be tough enough to wipe this damn thing once and for all.
I admire the families who could laugh and enjoy in spite of it all... and I'm striving very hard to be one of them. First, I have to learn to stop my tears, and than I have to find my smile back... And than I have to search for the positive in all this insanity...
But I seek your help to not remind me of my pain... So please pardon me if I don't talk abt our situation... Anything but cancer...
At this juncture, I am still finding it so tough to keep the faith, to pray. I need your help and your faith to keep us alive. Please say many many extra prayers for my dear char. From the bottom of my heart, thank you.
Love,
cyn mommy
I'm heart broken and I'm scared mad. I don't know what else to say.
I cannot stop crying. One moment I'm ok. One moment I'm just incredibly weak, I honestly feel that my body can just give way and crumble any minute, any second. I'm just barely functioning but I am already using every ounce of energy I can find to breathe and stay awake, stay sane... Stay alive...
When I first heard and felt the lump myself yesterday. I was emotionless.
But today, the reality has hit me real hard. I wake up and I find myself tearing non stop. I was crying when I was brushing my teeth. I was crying when I went to buy bread, I'm still crying when I'm eating.
Char kept asking if I'm ok. Why do I look like I'm crying. I said I'm sick, I have a running nose, I have a headache... I don't know what else to say...
I'm not ok and I don't know how to be okay. If you bump into me or see me, pls don't ask if I'm ok because obviously I'm not. Don't ask me how or why or what because I'm done explaining and I don't want to relive my fears time and again, by narrating our situation non stop.
We are admitting on Monday to start the ICE chemo. Our Chinese New Year this year was spent at Ward 76, so will our Christmas. If you feel like doing something for Char, feel free to drop by with a Xmas gift for her. I keep telling myself it's ok to miss a Xmas as long as we get many more to come.
I try to distract myself with what I can do to make everything better for her. I know she misses Santa and thought that Santa only visits in NYC where kids are spoilt with gifts every other day in December... Know of any Santas in Singapore? Pls let me know. I would very much like to ask if I can find a Santa to bring gifts to kids spending their Xmas inpatient.
It's time to get into battle mode again. Not like the war has ever stopped for us. But I won't give up. I simply won't. Because she has so much life and is still my cheeky baby dreaming of school and having long hair.
ICE is very tough, hopefully it will be tough enough to wipe this damn thing once and for all.
I admire the families who could laugh and enjoy in spite of it all... and I'm striving very hard to be one of them. First, I have to learn to stop my tears, and than I have to find my smile back... And than I have to search for the positive in all this insanity...
But I seek your help to not remind me of my pain... So please pardon me if I don't talk abt our situation... Anything but cancer...
At this juncture, I am still finding it so tough to keep the faith, to pray. I need your help and your faith to keep us alive. Please say many many extra prayers for my dear char. From the bottom of my heart, thank you.
Love,
cyn mommy
I have 2 wonderful kids
Monday, December 13, 2010
I am a very blessed mother with 2 wonderful, sweet and adorable kids.
JET LAGGED!
Yes, we are still trying to overcome our really annoying jet lag. We sleep through the daylight hours and awake at ungodly hours to find ourselves hungry and so full of life!
So here we are, at 4am, wide awake, just eaten and the kids are playing with whatever games they can get their hands on.
And I figured that its about time I do some updating here.
To all my friends who called, texted and left messages, please accept my sincere apologies. I am mostly asleep, still trying to adjust to checking my singapore phone, and erm, as what Josse termed, "a living dead".
A few minutes ago when I first logged on to blogspot, I told myself to try and not type a grim and dark entry like I did the last time. I cant say that I am feeling all gay and cheery right now but I will try.
Charmaine's right knee pain surfaced after she fell down on Sunday night, in NYC. I silently willed myself to believe that it was a result of her fall. Knowing her threshold for pain and her amazing will power, when it was time to leave for airport, she happily announced that she was having no pain and throughtout our 18hrs journey, she was bouncing around the seat and so excited about reaching home finally. I'm not surprised to find that she was back to her immobile self shortly after we landed. We had to give her a couple of doses of pain relief med and thankfully, her pain finally subsided on Friday.
And while we were up when the rest of Singapore is asleep and asleep while the rest of Singapore is awake, I have aplenty of opportunities to watch these 2 mischievious but totally adorable kids of mine, play and fight, kiss and make up, hug and kiss, fighting for my attention, enjoying our time together doing nothing really constructive and yet so priceless. I sit back, in my 'zombie mode', smile and try not to get myself overly worked out over their never-ending disagreements and hugging scenes. Maybe its because I am functioning at a 'sleep mode', I dont get frustrated easily even when I see them squabbling over nothingness and force me to be their judge. I have only probably half my tank of energy and hence, a faux calmness surrounds me, which ironically, has given me the wonderful opportunity to observe them from an onlooker view and instead of getting all frustrated, I was able to enjoy their sweetness, their harmless sibling rivalry, their love and their care for each other, in a way that has eluded me for the longest time.
Hence, I am a very blessed mother, and I am reminded of that every single day.
I first got news that the team in MSKCC changed their proposed treatment from the trial to the high dose ICE chemo on 1st December and that itself was an entire drama which got me really upset, drained, and just drop dead exhuasted. I was most disappointed with the way the team has handled Charmaine's case where a new decision has been made and yet no effort was made to inform me until I chance upon them myself.
Anyhow, we had our mini surgery that day for Charmaine to insert a temp line into her body for stem cells harvesting and yes, nothing ever goes without a little bit of drama. It was meant to be insert into her left chest and 1hr later, the head surgeon came out and said they couldnt get it into her chest and hence they had to put in a femur line instead. And because its a femur line, she might have to be admitted. Great. I just kind of went pale and decided that Jase would have to skip school that day to be with me while I figure out the logistics, in case Charmaine has to be warded. Can you believe it but none of all these was ever mentioned to me before the surgery. Something they do day in and day out might be nothing new to them but to a first timer like me, I had knew almost nothing, and tried to go as prepared as I could be but still, how was I supposed to know the they would put in a femur line and that warrants an admission.
My angel that day came in the form of Jase. Charmaine was in so much pain from the femur line, couldnt move much. And we had to commute from one buliding to another buliding in the rain. Thank God for Jase. He was there every step of the way, holding elevator doors for us, kept Charmaine company while I ran off to get food for them, and pretty much made the day less daunting for being him, simply.
I was just plain exhuasted. Had to wake up at 4am that day and dozed off at some point on the sofa while waiting for her stem cells counts to come back. MIRACLE! When we were finally called back to the room, we were told the GREAT news that we had harvested 20.3 million stem cells from Charmaine in one day!!! It was a godzillion amount for them to get from any kid in one day. And we didnt even have to inject her with that hallucination-inducing medication which was supposed to cost us an atronomical amount. Charmaine now has 5 bags of stem cells sitting in the storage with MSKCC which I pray that we will never have to use.
Than came the part which I really dread and fear. Good news was that we could remove the femur line on the spot and be sent home. Bad news is they do it in such a barbaric way, you wish that you could kill those very folks. Maybe they do it universally but to me, it was just plain cruel. Imagine this, after all that they had gone through for the day, from 6:30am in the morning, surgery, 3hours of stem cells harvesting, and waiting and minimal movement due to the pain, the worst is about to begin. They cut the sitches securing the line to their femur without any pain relief med. You know, just there and than, in the consultation room, on the bed. Where I was supposed to hold her down firmly. After she finished cutting, I dont even know what was the exact steps, I was just more than willing to kill myself, rather than watch this whole episode unfold, with me being their partner in crime. I remember them having to press and press while she screamed and screamed. She cried so hard the entire floor could hear her and she kept begging for them to stop because it was so painful. And than they pulled and she just grabbed my hand so tightly I've never seen her in so much pain ever. It was so unfair and it was inhumane.
And than totally drained, I pushed her to the secretary and asked when can we start treatment and that was when I found out about their change in plans. I dont even want to go into it here.
Basically after another hour of sitting in the room, half in shock, half in tears, barely recovering from the episode of 'femur pulling murderous attempt', I walked out more confused, more lost, more disppointed and more dead than ever. Honestly, I dont even know how I managed to walk the 2 kids and myself 6 streets back home to RMDH. I vaguely remember it was abt 6-7pm and I had to send an urgent email to Dr Aung back home in Singapore, pleading for help, for guidance. Because the doctors in MSKCC wanted me to decide on my own. Thankfully, Dr Aung called. We had a short discussion and the plan was for me to talk to Dr Kushner personally and than decide. I shot an email to Dr K immediately and thankfully, he made time to speak with me on Thursday. Cant say that I am seeing clear blue skies but with a little help from Dr Aung and after the short discussion with Dr Kushner, I decided to return home for their suggested ICE chemo.
That was Thursday afternoon and than everything just went in a flash. Booking air tickets, and packing frantically to head home to Singapore as soon as possible. Thank you to Ms Nicky from SIA for making airport logistics a breeze. And not to mention, Stephanie and Kelly, Iris and Orathai, Kim and Ethan and many others who stopped by to help me with all the packing, ferrying... otherwise I would never have been able to make that flight on Monday.
I wasnt sure if our horrifying and extremely traumatising episode on Wednesday affected our little princess but she was almost adament about returning home. She was getting really homesick and when she overheard some bits of the discussion I had with the team on Wednesday, she questioned if we were heading back home to Singapore on that Friday itself. When I said no, she was upset and just sobbed, saying that she miss her por por, gong gong, gu gu and cola. That kind of helped me made the decision to head back as well.
One would think that after our Wednesday ordeal, Charmaine might have been immobile due to the pain. But alas, we are all wrong. When we reached back to RMDH barely 2hrs after pulling out her femur line, she was limping a little but she wasnt going to let anything get in her way of fun. Yes, she was up, running in her Charmaine steps, and crawling with all the other kids in the house, having the time of her life. I was pretty much, the only one still caught up in all the 'sadness', 'shock' and 'deadness', tears and fears.
When I made up my mind to return, for Charmaine's sake, for whatever treatment available back home, the mood was set for the kids. Jase was annoucing to the whole world that we were flying back and Charmaine was just trying to use her magic powers to help mom to pack faster so that we can fly back immediately now! :-)
Their happiness helped kept me sane during those days. Literally life-saving. I mean I was all of a sudden dealing with a bad progression which was not so bad just a week ago. And just a week ago when I thought I was packing for home, I was told to remain for a new trial. And than a week later, I was frantically packing for home. Just how much more crazy can things get, I dont want to know anymore.
Its Monday now. I am nowhere near making that crucial decision for Charmaine. Is it because I am getting way over my head with all my jumbled emotions? I am still waiting for that light to appear out of nowhere and guide me towards the right decision. It just doesnt want to appear at all! :-( In the past, I have always depended on that light, never failing me. You know, the feeling that one day, you just wake up suddenly and you know what you have to do.
I dont even know how to get rational over this anymore. When I questioned if it was truly a progression? Dr Kushner said that all objective information points to a progression and a bad one at that. One that has defiantly grew despite all the light chemo and radiation even! One that Dr Kushner said he couldnt even think of any offhand that has progressed through Radiation like her. BUT her other markers such as Urine (HVA/VMA) and LDH is NORMAL. NORMAL average person's normal. SO her case is a huge mystery, a huge puzzle and we are treading in unknown waters all the times since August.
I have 2 options given by them, extremely different. One very high dose chemo with bad side effects. Not many great results even. One new trial which fortunately Dr Aung has managed to discover that the same trial drug is avaiable in KKH for adults (with some paperwork, we will be able to get that approved for Charmaine). The trial is used in conjunction with a light chemo, Irinotecan and Temodar which we already had 6 cycles in Singapore prior to us leaving in August. So we are just really counting on the trial drug, Avastin, since her body had already seen the chemo agents. The trial can only stablise her at best. The ICE may miraculously bring her to remission but I have hardly seen any cases.
Of course, there is always the chance that none of the above works for her and she may continue to progress.
Last Friday when I met up with Dr Aung, it suddenly dawned upon me to ask: "Do you think its ok that we play the wait and see game? Repeat the scans in a month just to check if it was indeed a true progression since not everyone of us is convinced that it was a true progression?" Surprisingly, Dr Aung said she is OK with it.
So now, I have 3 options to work with, all vastly different. With some high risks. And I am so torn. I dont know how to decide because I am not convinced its a true progression. And because I am not convinced, I find it extremely difficult to put her through the rough ICE chemo. Yet, I am so afraid. I am so afraid that I am wrong. If it was a true progression, I might have worsen matters by waiting. But she is SO WELL. Despite her posture and bow-shaped legs, she is still hopping and playing. I dont trust myself anymore. And no offence intended, I dont really trust the doctor's judgements anymore. Am I in some sort of a denial?
I have really reached my wits end and my daughter's life is ticking each day, waiting for her mom aka me to make the right decision for her. I feel more alone than ever. I dont expect anyone to be able to share this responsibility with me and I know at the end of the day, it really just boils down to me, myself alone. But I am not making any advancement at all. I am jet lagged, my suitcases are still lying everywhere and I am still at point zero.
I sit here, typing this, while my 2 babies are sitting right beside me playing castle. What is my reality? Everything is a blur. They are normal kids, I am a normal mom. How I wish I could be getting excited over Jase's first day at his milestone phase of entering Primary One in a few weeks. Instead, I am here totally stressed out with deciding how best to poison my own daughter in the hope of saving her life. I still cant register it even though its been almost 2 years. They just look fine to me. She just looks normal to me. Can I just stop everything and pray fervently that my miracle is already unfolding before me and all that I have to do is to take that leap of faith and know it in my gut that she is cancer-free and that we need no more treatment.
Please pray for wisdom to be bestowed upon me. I need it now more than ever to make the lucky and right decision for my baby girl.
Charmaine has been sobbing every now and than: "I hate it, this is so unfair. Its so unfair that I cannot run like Jase, its so unfair that I am sick! Its so unfair that I cant go to school and its so unfair that I dont have hair! I just dont want to be sick anymore. I wish I can go back to when I was 3 years old, when I have my long hair and when I was not sick..."
I have no words for her... absolutely no words... its only fair that she feels tired... she has been fighting it so long, and she is only so young and it truly is so unfair...
I need the strength, the hope, the faith, and most of all, the wisdom to even continue for another minute...
Please pray for us... for the miracle that Charmaine is already cured despite all the scans and crap, the miracle that no other kids should have to suffer with NB.
Its Christmas, it should be filled with joy and laughters...
Love,
Cyn mommy
JET LAGGED!
Yes, we are still trying to overcome our really annoying jet lag. We sleep through the daylight hours and awake at ungodly hours to find ourselves hungry and so full of life!
So here we are, at 4am, wide awake, just eaten and the kids are playing with whatever games they can get their hands on.
And I figured that its about time I do some updating here.
To all my friends who called, texted and left messages, please accept my sincere apologies. I am mostly asleep, still trying to adjust to checking my singapore phone, and erm, as what Josse termed, "a living dead".
A few minutes ago when I first logged on to blogspot, I told myself to try and not type a grim and dark entry like I did the last time. I cant say that I am feeling all gay and cheery right now but I will try.
Charmaine's right knee pain surfaced after she fell down on Sunday night, in NYC. I silently willed myself to believe that it was a result of her fall. Knowing her threshold for pain and her amazing will power, when it was time to leave for airport, she happily announced that she was having no pain and throughtout our 18hrs journey, she was bouncing around the seat and so excited about reaching home finally. I'm not surprised to find that she was back to her immobile self shortly after we landed. We had to give her a couple of doses of pain relief med and thankfully, her pain finally subsided on Friday.
And while we were up when the rest of Singapore is asleep and asleep while the rest of Singapore is awake, I have aplenty of opportunities to watch these 2 mischievious but totally adorable kids of mine, play and fight, kiss and make up, hug and kiss, fighting for my attention, enjoying our time together doing nothing really constructive and yet so priceless. I sit back, in my 'zombie mode', smile and try not to get myself overly worked out over their never-ending disagreements and hugging scenes. Maybe its because I am functioning at a 'sleep mode', I dont get frustrated easily even when I see them squabbling over nothingness and force me to be their judge. I have only probably half my tank of energy and hence, a faux calmness surrounds me, which ironically, has given me the wonderful opportunity to observe them from an onlooker view and instead of getting all frustrated, I was able to enjoy their sweetness, their harmless sibling rivalry, their love and their care for each other, in a way that has eluded me for the longest time.
Hence, I am a very blessed mother, and I am reminded of that every single day.
I first got news that the team in MSKCC changed their proposed treatment from the trial to the high dose ICE chemo on 1st December and that itself was an entire drama which got me really upset, drained, and just drop dead exhuasted. I was most disappointed with the way the team has handled Charmaine's case where a new decision has been made and yet no effort was made to inform me until I chance upon them myself.
Anyhow, we had our mini surgery that day for Charmaine to insert a temp line into her body for stem cells harvesting and yes, nothing ever goes without a little bit of drama. It was meant to be insert into her left chest and 1hr later, the head surgeon came out and said they couldnt get it into her chest and hence they had to put in a femur line instead. And because its a femur line, she might have to be admitted. Great. I just kind of went pale and decided that Jase would have to skip school that day to be with me while I figure out the logistics, in case Charmaine has to be warded. Can you believe it but none of all these was ever mentioned to me before the surgery. Something they do day in and day out might be nothing new to them but to a first timer like me, I had knew almost nothing, and tried to go as prepared as I could be but still, how was I supposed to know the they would put in a femur line and that warrants an admission.
My angel that day came in the form of Jase. Charmaine was in so much pain from the femur line, couldnt move much. And we had to commute from one buliding to another buliding in the rain. Thank God for Jase. He was there every step of the way, holding elevator doors for us, kept Charmaine company while I ran off to get food for them, and pretty much made the day less daunting for being him, simply.
I was just plain exhuasted. Had to wake up at 4am that day and dozed off at some point on the sofa while waiting for her stem cells counts to come back. MIRACLE! When we were finally called back to the room, we were told the GREAT news that we had harvested 20.3 million stem cells from Charmaine in one day!!! It was a godzillion amount for them to get from any kid in one day. And we didnt even have to inject her with that hallucination-inducing medication which was supposed to cost us an atronomical amount. Charmaine now has 5 bags of stem cells sitting in the storage with MSKCC which I pray that we will never have to use.
Than came the part which I really dread and fear. Good news was that we could remove the femur line on the spot and be sent home. Bad news is they do it in such a barbaric way, you wish that you could kill those very folks. Maybe they do it universally but to me, it was just plain cruel. Imagine this, after all that they had gone through for the day, from 6:30am in the morning, surgery, 3hours of stem cells harvesting, and waiting and minimal movement due to the pain, the worst is about to begin. They cut the sitches securing the line to their femur without any pain relief med. You know, just there and than, in the consultation room, on the bed. Where I was supposed to hold her down firmly. After she finished cutting, I dont even know what was the exact steps, I was just more than willing to kill myself, rather than watch this whole episode unfold, with me being their partner in crime. I remember them having to press and press while she screamed and screamed. She cried so hard the entire floor could hear her and she kept begging for them to stop because it was so painful. And than they pulled and she just grabbed my hand so tightly I've never seen her in so much pain ever. It was so unfair and it was inhumane.
And than totally drained, I pushed her to the secretary and asked when can we start treatment and that was when I found out about their change in plans. I dont even want to go into it here.
Basically after another hour of sitting in the room, half in shock, half in tears, barely recovering from the episode of 'femur pulling murderous attempt', I walked out more confused, more lost, more disppointed and more dead than ever. Honestly, I dont even know how I managed to walk the 2 kids and myself 6 streets back home to RMDH. I vaguely remember it was abt 6-7pm and I had to send an urgent email to Dr Aung back home in Singapore, pleading for help, for guidance. Because the doctors in MSKCC wanted me to decide on my own. Thankfully, Dr Aung called. We had a short discussion and the plan was for me to talk to Dr Kushner personally and than decide. I shot an email to Dr K immediately and thankfully, he made time to speak with me on Thursday. Cant say that I am seeing clear blue skies but with a little help from Dr Aung and after the short discussion with Dr Kushner, I decided to return home for their suggested ICE chemo.
That was Thursday afternoon and than everything just went in a flash. Booking air tickets, and packing frantically to head home to Singapore as soon as possible. Thank you to Ms Nicky from SIA for making airport logistics a breeze. And not to mention, Stephanie and Kelly, Iris and Orathai, Kim and Ethan and many others who stopped by to help me with all the packing, ferrying... otherwise I would never have been able to make that flight on Monday.
I wasnt sure if our horrifying and extremely traumatising episode on Wednesday affected our little princess but she was almost adament about returning home. She was getting really homesick and when she overheard some bits of the discussion I had with the team on Wednesday, she questioned if we were heading back home to Singapore on that Friday itself. When I said no, she was upset and just sobbed, saying that she miss her por por, gong gong, gu gu and cola. That kind of helped me made the decision to head back as well.
One would think that after our Wednesday ordeal, Charmaine might have been immobile due to the pain. But alas, we are all wrong. When we reached back to RMDH barely 2hrs after pulling out her femur line, she was limping a little but she wasnt going to let anything get in her way of fun. Yes, she was up, running in her Charmaine steps, and crawling with all the other kids in the house, having the time of her life. I was pretty much, the only one still caught up in all the 'sadness', 'shock' and 'deadness', tears and fears.
When I made up my mind to return, for Charmaine's sake, for whatever treatment available back home, the mood was set for the kids. Jase was annoucing to the whole world that we were flying back and Charmaine was just trying to use her magic powers to help mom to pack faster so that we can fly back immediately now! :-)
Their happiness helped kept me sane during those days. Literally life-saving. I mean I was all of a sudden dealing with a bad progression which was not so bad just a week ago. And just a week ago when I thought I was packing for home, I was told to remain for a new trial. And than a week later, I was frantically packing for home. Just how much more crazy can things get, I dont want to know anymore.
Its Monday now. I am nowhere near making that crucial decision for Charmaine. Is it because I am getting way over my head with all my jumbled emotions? I am still waiting for that light to appear out of nowhere and guide me towards the right decision. It just doesnt want to appear at all! :-( In the past, I have always depended on that light, never failing me. You know, the feeling that one day, you just wake up suddenly and you know what you have to do.
I dont even know how to get rational over this anymore. When I questioned if it was truly a progression? Dr Kushner said that all objective information points to a progression and a bad one at that. One that has defiantly grew despite all the light chemo and radiation even! One that Dr Kushner said he couldnt even think of any offhand that has progressed through Radiation like her. BUT her other markers such as Urine (HVA/VMA) and LDH is NORMAL. NORMAL average person's normal. SO her case is a huge mystery, a huge puzzle and we are treading in unknown waters all the times since August.
I have 2 options given by them, extremely different. One very high dose chemo with bad side effects. Not many great results even. One new trial which fortunately Dr Aung has managed to discover that the same trial drug is avaiable in KKH for adults (with some paperwork, we will be able to get that approved for Charmaine). The trial is used in conjunction with a light chemo, Irinotecan and Temodar which we already had 6 cycles in Singapore prior to us leaving in August. So we are just really counting on the trial drug, Avastin, since her body had already seen the chemo agents. The trial can only stablise her at best. The ICE may miraculously bring her to remission but I have hardly seen any cases.
Of course, there is always the chance that none of the above works for her and she may continue to progress.
Last Friday when I met up with Dr Aung, it suddenly dawned upon me to ask: "Do you think its ok that we play the wait and see game? Repeat the scans in a month just to check if it was indeed a true progression since not everyone of us is convinced that it was a true progression?" Surprisingly, Dr Aung said she is OK with it.
So now, I have 3 options to work with, all vastly different. With some high risks. And I am so torn. I dont know how to decide because I am not convinced its a true progression. And because I am not convinced, I find it extremely difficult to put her through the rough ICE chemo. Yet, I am so afraid. I am so afraid that I am wrong. If it was a true progression, I might have worsen matters by waiting. But she is SO WELL. Despite her posture and bow-shaped legs, she is still hopping and playing. I dont trust myself anymore. And no offence intended, I dont really trust the doctor's judgements anymore. Am I in some sort of a denial?
I have really reached my wits end and my daughter's life is ticking each day, waiting for her mom aka me to make the right decision for her. I feel more alone than ever. I dont expect anyone to be able to share this responsibility with me and I know at the end of the day, it really just boils down to me, myself alone. But I am not making any advancement at all. I am jet lagged, my suitcases are still lying everywhere and I am still at point zero.
I sit here, typing this, while my 2 babies are sitting right beside me playing castle. What is my reality? Everything is a blur. They are normal kids, I am a normal mom. How I wish I could be getting excited over Jase's first day at his milestone phase of entering Primary One in a few weeks. Instead, I am here totally stressed out with deciding how best to poison my own daughter in the hope of saving her life. I still cant register it even though its been almost 2 years. They just look fine to me. She just looks normal to me. Can I just stop everything and pray fervently that my miracle is already unfolding before me and all that I have to do is to take that leap of faith and know it in my gut that she is cancer-free and that we need no more treatment.
Please pray for wisdom to be bestowed upon me. I need it now more than ever to make the lucky and right decision for my baby girl.
Charmaine has been sobbing every now and than: "I hate it, this is so unfair. Its so unfair that I cannot run like Jase, its so unfair that I am sick! Its so unfair that I cant go to school and its so unfair that I dont have hair! I just dont want to be sick anymore. I wish I can go back to when I was 3 years old, when I have my long hair and when I was not sick..."
I have no words for her... absolutely no words... its only fair that she feels tired... she has been fighting it so long, and she is only so young and it truly is so unfair...
I need the strength, the hope, the faith, and most of all, the wisdom to even continue for another minute...
Please pray for us... for the miracle that Charmaine is already cured despite all the scans and crap, the miracle that no other kids should have to suffer with NB.
Its Christmas, it should be filled with joy and laughters...
Love,
Cyn mommy
Some videos
Cyn and the kids are still jetlagged so pardon the lack of updates.
To inject a little light-hearted atmosphere, I've shared some videos here. Click to open in separate windows for video descriptions.
To inject a little light-hearted atmosphere, I've shared some videos here. Click to open in separate windows for video descriptions.
Safe and Sound
Wednesday, December 8, 2010
SQ captain took a good flight this morning, and the trio reached the airport earlier than expected. Despite waking up @ 5am, they stil have to wait for us to pick them up. Thanks for Michelle and team in helping them bring parts of the luggage back. Else, gong-gong and our car, will not be able to fit all of them. ;)
Jase jase has lost alot of weight, almost like the skeleton top he wore this morning. He grew much taller, and heavier. I cant even carry him for long! Always as "precious-moments" as ever.
Char Char has grew taller, and looked like there was no Monster trace in her body at all! Cyn Mommy said that Char has lost weight, but from what I see, she looks damn good =) Always her usual cool style and playing her ipad, even when gong-gong, po po and gu gu walk over.
Just when I thought the kids might turn too old for the silly games we always play, Jase stood on the trolley and demanded me to push. Char went to get Josh to carry her, and compete with me and Jase.
Glad to see the kids are back in Singapore, well-adjusted, I hope by now.
Hopefully, they are back in their eating mode, where chicken wings, noodles, duck rice, bao, etc, are all within reach.
Come Friday, Char will be having a test on her current status, and till then, rest well darlings.
Love, Charlene
Jase jase has lost alot of weight, almost like the skeleton top he wore this morning. He grew much taller, and heavier. I cant even carry him for long! Always as "precious-moments" as ever.
Char Char has grew taller, and looked like there was no Monster trace in her body at all! Cyn Mommy said that Char has lost weight, but from what I see, she looks damn good =) Always her usual cool style and playing her ipad, even when gong-gong, po po and gu gu walk over.
Just when I thought the kids might turn too old for the silly games we always play, Jase stood on the trolley and demanded me to push. Char went to get Josh to carry her, and compete with me and Jase.
Glad to see the kids are back in Singapore, well-adjusted, I hope by now.
Hopefully, they are back in their eating mode, where chicken wings, noodles, duck rice, bao, etc, are all within reach.
Come Friday, Char will be having a test on her current status, and till then, rest well darlings.
Love, Charlene
Our Princess is so excited to be back home...
Tuesday, December 7, 2010
In Aunty Stephanie's car, Charmaine called back to spread her excitement to all back in Singapore. "Yay.. I am coming back to Singapore" " I miss po po, gong gong, and gu gu, and cola" " but i dont miss Charlene jiejie"
It is heartwarming to hear the laughters of Charmaine and yes, we are alll excited to see u back in Singapore!
And, Charmaine remembers to request for her favourite chocolate bread, 2 loaves, so that she can eat it all in a day! I wonder how she is going to fill her little tummy with the subsequent food requests... chicken wings, mee hoon, duck rice...
Cant wait to see our little darling soon!
Her cheekiness never changed, and ever street-smart. When asked if she misses me, she will say no. "Hmm... then chocolate bread how?" and she immediately said, " I miss u charlene jiejie... is it if i miss u more, i have more chocolate bread?"
Whee ^^
Safe travels my deariesss!
And thanks Singapore Airline, for making the journey home, an easier one.
Love, Charlene
P/S: Thank u Stephanie and Orathai!!!!
It is heartwarming to hear the laughters of Charmaine and yes, we are alll excited to see u back in Singapore!
And, Charmaine remembers to request for her favourite chocolate bread, 2 loaves, so that she can eat it all in a day! I wonder how she is going to fill her little tummy with the subsequent food requests... chicken wings, mee hoon, duck rice...
Cant wait to see our little darling soon!
Her cheekiness never changed, and ever street-smart. When asked if she misses me, she will say no. "Hmm... then chocolate bread how?" and she immediately said, " I miss u charlene jiejie... is it if i miss u more, i have more chocolate bread?"
Whee ^^
Safe travels my deariesss!
And thanks Singapore Airline, for making the journey home, an easier one.
Love, Charlene
P/S: Thank u Stephanie and Orathai!!!!
On Char Operation
Friday, December 3, 2010
On Dec 2 2010 9:42pm SG Time:
Char is ok now but it was so painful to watch. Now they want me to go back for high dose. Tell me to decide. I'm so torn.
Thanks for all the messages on Charmaine's operation. it went well, though like Cyn mentioned, always heartbroken to see your own child suffering all these.
The trio will be back in Singapore soon as the treatment in US has ended. The monster might have won this round, but we are all pressing on our faith that, Charmaine will surely win this war.
Some of you have received notification on their returning, and for the rest, we will inform you once they are well-rested from the traveling. Cyn is now sick, and has to prepare for home, hence she might not be able to response fast for those who care.
On the other note, the kids are real excited to be back. Nothing beats @ home =) Charmaine has been whining that she misses Singapore much, her granny, grandpa, and uncle. I am sure she does miss me and godma, though she always says no. ;) Being the man in the family, jase jase is so cool about returning, even when he has spread his wide network of friends around the community.
Welcome back Cyn! ^^
Love, Charlene
Char is ok now but it was so painful to watch. Now they want me to go back for high dose. Tell me to decide. I'm so torn.
Thanks for all the messages on Charmaine's operation. it went well, though like Cyn mentioned, always heartbroken to see your own child suffering all these.
The trio will be back in Singapore soon as the treatment in US has ended. The monster might have won this round, but we are all pressing on our faith that, Charmaine will surely win this war.
Some of you have received notification on their returning, and for the rest, we will inform you once they are well-rested from the traveling. Cyn is now sick, and has to prepare for home, hence she might not be able to response fast for those who care.
On the other note, the kids are real excited to be back. Nothing beats @ home =) Charmaine has been whining that she misses Singapore much, her granny, grandpa, and uncle. I am sure she does miss me and godma, though she always says no. ;) Being the man in the family, jase jase is so cool about returning, even when he has spread his wide network of friends around the community.
Welcome back Cyn! ^^
Love, Charlene
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