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
The strength is strong
Tuesday, November 30, 2010
The fight with the monster is still ongoing, and our princess never stop fighting.
Despite a low 2010, our chirpy princess is still so feisty.
She just woke up, and "parroting" (echoing whatever Cyn says) throughout our conversation. Charmaine misses home, misses Singapore, misses her po po and gu gu loads.
Festive season is coming, and many of you would have received an email to get Perfume . Nope it is not spam (for those who asked), and it is actually an initiative by Josse. The funds will help tremendously for Cynthia and family, be it living, or searching for other options for Charmaine.
Do not forget to pray for her and the family for strength. Of course, for Jase jase too =)
Thank you Ling lee and friends,
Thank you Huiling and team from iDA
Your continual efforts in raising funds for the family has minus a few bits of stress from Cyn's daily worries.
Last December was when Godma Jolene and myself, spent our Xmas with them.
This year, I am all stuck in Singapore.
Miss you, Miss them...
Babe, hang on strong.
Love, Charlene
Despite a low 2010, our chirpy princess is still so feisty.
She just woke up, and "parroting" (echoing whatever Cyn says) throughout our conversation. Charmaine misses home, misses Singapore, misses her po po and gu gu loads.
Festive season is coming, and many of you would have received an email to get Perfume . Nope it is not spam (for those who asked), and it is actually an initiative by Josse. The funds will help tremendously for Cynthia and family, be it living, or searching for other options for Charmaine.
Do not forget to pray for her and the family for strength. Of course, for Jase jase too =)
Thank you Ling lee and friends,
Thank you Huiling and team from iDA
Your continual efforts in raising funds for the family has minus a few bits of stress from Cyn's daily worries.
Last December was when Godma Jolene and myself, spent our Xmas with them.
This year, I am all stuck in Singapore.
Miss you, Miss them...
Babe, hang on strong.
Love, Charlene
Feeling an all time low...
Friday, November 26, 2010
I am finding it hard to write... I am finding it tough to control the tears... I don't understand what I'm feeling anymore...
What do I say to you? What do I even say to myself... I no longer know what is going on... What to think? How to decide? Who can I trust?
All I know is that I'm going through the motion every minute of my life. I wake up; get Jase ready for school; feed Char; go to hospital; pick Jase from school; feed them and than sleep to another day of routine. Like a robot, void of love, faith, hope and happiness.
I remember how to laugh and I still can smile but my heart feels so numb. Some hours are easier to pass, some days feel more grim than others... In one week, the number of bad news we hear in the house is enough to make me want to wither like a flower... Char's progression from nothing to something so large despite radiation and chemotherapy just makes me want to lay somewhere and turn myself into dust... Another 2 yr old girl who just recently completed chemotherapy and is about to get back to her normal life just suddenly lost conscious on the same day we hear our horrible news. They found a tumor in her head. That night, you see tearful faces of moms vs the laughters of the little ones unaware of the harsh reality their fate has brought them...
I still dont know what to write... everything is a jumbled mess in my head, my heart and my mind. Its as though that staying away from here, from updating our Facebook status 'helps' me in escaping all these. Maybe subconsciously my mind doesnt want to have anything to do with neuroblastoma or whatever cancer there is. I am drained. I am worn out. I want to hate something/someone. This fight feels so unfair. Why couldnt I throw my punches directly at it? I am fighting blind all the time. My enemy is out of sight, lurking, hiding and probably having a good time seeing my defeated, dejected self now. And this coward is using the most sickening underhand method towards me!!! Fight me openly!!! DONT TORTURE MY BABY LIKE THIS!
To wake up one day and find that her leg has grown more bow-shaped than the previous day is like having a knife stab at my heart a thousand times but at least when its a knife wound, at some point, I will catch my last breathe and not feel anything. But to force me to watch daily and fear daily, having absolutely no idea what is causing it and getting no help, no answers from the doctors is driving me nuts. I have no idea how is it other parents in the house can put on such a brave front, always striving to find the good in spite of it all. Even thankful for being able to spend Thanksgiving together, in spite of it all.
I cant. I dont want. I want to cry, to curse at every darn cancer I know of. I dont even pray the past week. What has all my prayers brought? Nothing. Absolutely nothing but one bad news after another. I lost my direction totally. Whats the point really. Its like I am just trying so hard to act like there is something I can do and that is to pray. I have nothing to be thankful for, at least nothing that I need. Yes, there is always the bright side to everything.
But today, I am done with searching for that bright spot in my life. I want to let my myself sink into my abyss of darkness, free falling, nothing holding me or pulling me back. Maybe, just maybe, only than will I reach my lowest point, hit the sea bed or touch the core of the earth or something and that there is simply honestly no other way but... up. Even this whole sentence feels like crap to me, if I may add. Like another myth, just to provide hope to the hopeless ones like yours truly.
I mean we are all programmed this way, arent we? To cheer the hopeless, to tell them not to give up, to give them something to hold on to even if its a myth... And this is what life is all about, isnt it? We all will end up 6 feet down, at some point. If everyone harps on our death, we might as well have given up on living from the day we were given life. And than, whats the point of living anyway.
Am I making sense here? I bet not. I know I am pretty much acting like a brat now, refusing to heed any advice, rejecting any support, and is all bent on living in my darkness. I dont know why am I acting this way. Truth is: THIS IS TOUGH. I am not always the positive, strong, courageous, and amazing mother. I have my weaknesses, my faults, my negativity, my fears and my desperation. And today feels like the moment of darkness has engulfed me entirely.
I dont want to fight this moment. Do you think if I stopped, call for a truce? Or take 5? and the battle can be paused momentarily? Probably not right? The enemy might be cunning and make use of my moment of weakness to finish me up once and for all? But truth is, even though I want to fight on, I'm badly wounded. So badly wounded I can barely stand up on my own. Whats more to protect my 2 little ones. Have you felt this way like I do? Like everything just seem to be wrong. Nothing is okay.
Tomorrow, Charmaine will be having a minor operation for the surgeon to put a temp into her body. They will check her counts and if her CD 4 is zero, we will have to head back to Urgent Care at 9pm to have an injection to boost her CD 4 counts in order for us to harvest her stem cells on Wednesday. I was told that the injection would not have any side effects but coincidentally met a parent here whose daughter got the same injection a couple of months back and suffered from hallucinations for over a week. I was shocked when I heard that. But its not like its anything new really. I mean I have already learned that my path will be strewn with obstacles big and small and it was never meant to be easy. To expect good news is like someone trying to win the lottery or jackpot. But yet everything when I hear another shocker, it still has that effect of freaking me out like the first time, and always never fail to upset me. One will never build an immunity to news like that, it seems.
And depending on the stem cells harvested on Wednesday, we may have to harvest on Thursday as well. And the plan is to start her on the new trial as soon as we manage to harvest enough stem cells from her.
So this is the part where I strive to be like everyone else and repeat the mantra:
IN SPITE OF IT ALL...
Charmaine is still walking/limping/running or whatever you call it, with her rather bow-shaped left leg, not complaining of pain (THANK GOD!). You would never be able to tell that we just received news of bad scan results a week ago and that she has progressed much more. She is still the same girl, smiling, playing, totally oblivious to what's in store this week. And it breaks my heart. I cannot even bear to begin to explain to her what to expect for this week. How is it possible? There must be a huge mistake somewhere. She absolutely do not fit the bill. Am I in denial? I dont know. All I know is that the docs themselves are having a hard time picture her physical reality with her scan reality. NOTHING fits except for that massive black spot on that stupid scan.
I am tormented daily on the decision. Under common circumstances, the child will be put through high dose chemo immediately almost without questioning. But yet, they have proposed a light dose with a new antibody. It definitely wasnt the norm. And I am struggling to convince myself which is better. I dont want to ruin her quality of life with a high dose but can I risk delaying the high dose for 2months while we do a light dose? What happens if she progressed even further? I am SOOOOOOOOOOOOOOOOOOOOO TORN.
But yet, we know that Charmaine's cancer is somewhat resistant to chemo and hence I do not feel safe just doing chemo alone, without something else. Hence, while high dose is norm, I dont know if her cancer cells will be killed or not. I mean those darn cells can even survive all the radiation and continue to multiply!?!?!?!?! ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
On top of all these, I still have to fret about finances and all. Trying to set up new appointments with other hospitals should we run out of options in NY...
I just want to stop, wave my white flag and call for a truce. I miss home. I just want to go back home, lay on the same bed, be that 16 year old girl who can just hide in the room, from the rest of world, have a good cry and not have to carry any responsibilities on my shoulder...
My faith is being rocked big time but if you have faith in me, please help me pray that the operation will go smoothly tomorrow and that we will be able to harvest alot more stem cells than what is required without that hallucinating injection but just GCSF alone. And that we have finally found the right treatment for Charmaine. I NEED THAT MIRACLE NOW.
Love,
Cyn mommy
What do I say to you? What do I even say to myself... I no longer know what is going on... What to think? How to decide? Who can I trust?
All I know is that I'm going through the motion every minute of my life. I wake up; get Jase ready for school; feed Char; go to hospital; pick Jase from school; feed them and than sleep to another day of routine. Like a robot, void of love, faith, hope and happiness.
I remember how to laugh and I still can smile but my heart feels so numb. Some hours are easier to pass, some days feel more grim than others... In one week, the number of bad news we hear in the house is enough to make me want to wither like a flower... Char's progression from nothing to something so large despite radiation and chemotherapy just makes me want to lay somewhere and turn myself into dust... Another 2 yr old girl who just recently completed chemotherapy and is about to get back to her normal life just suddenly lost conscious on the same day we hear our horrible news. They found a tumor in her head. That night, you see tearful faces of moms vs the laughters of the little ones unaware of the harsh reality their fate has brought them...
I still dont know what to write... everything is a jumbled mess in my head, my heart and my mind. Its as though that staying away from here, from updating our Facebook status 'helps' me in escaping all these. Maybe subconsciously my mind doesnt want to have anything to do with neuroblastoma or whatever cancer there is. I am drained. I am worn out. I want to hate something/someone. This fight feels so unfair. Why couldnt I throw my punches directly at it? I am fighting blind all the time. My enemy is out of sight, lurking, hiding and probably having a good time seeing my defeated, dejected self now. And this coward is using the most sickening underhand method towards me!!! Fight me openly!!! DONT TORTURE MY BABY LIKE THIS!
To wake up one day and find that her leg has grown more bow-shaped than the previous day is like having a knife stab at my heart a thousand times but at least when its a knife wound, at some point, I will catch my last breathe and not feel anything. But to force me to watch daily and fear daily, having absolutely no idea what is causing it and getting no help, no answers from the doctors is driving me nuts. I have no idea how is it other parents in the house can put on such a brave front, always striving to find the good in spite of it all. Even thankful for being able to spend Thanksgiving together, in spite of it all.
I cant. I dont want. I want to cry, to curse at every darn cancer I know of. I dont even pray the past week. What has all my prayers brought? Nothing. Absolutely nothing but one bad news after another. I lost my direction totally. Whats the point really. Its like I am just trying so hard to act like there is something I can do and that is to pray. I have nothing to be thankful for, at least nothing that I need. Yes, there is always the bright side to everything.
But today, I am done with searching for that bright spot in my life. I want to let my myself sink into my abyss of darkness, free falling, nothing holding me or pulling me back. Maybe, just maybe, only than will I reach my lowest point, hit the sea bed or touch the core of the earth or something and that there is simply honestly no other way but... up. Even this whole sentence feels like crap to me, if I may add. Like another myth, just to provide hope to the hopeless ones like yours truly.
I mean we are all programmed this way, arent we? To cheer the hopeless, to tell them not to give up, to give them something to hold on to even if its a myth... And this is what life is all about, isnt it? We all will end up 6 feet down, at some point. If everyone harps on our death, we might as well have given up on living from the day we were given life. And than, whats the point of living anyway.
Am I making sense here? I bet not. I know I am pretty much acting like a brat now, refusing to heed any advice, rejecting any support, and is all bent on living in my darkness. I dont know why am I acting this way. Truth is: THIS IS TOUGH. I am not always the positive, strong, courageous, and amazing mother. I have my weaknesses, my faults, my negativity, my fears and my desperation. And today feels like the moment of darkness has engulfed me entirely.
I dont want to fight this moment. Do you think if I stopped, call for a truce? Or take 5? and the battle can be paused momentarily? Probably not right? The enemy might be cunning and make use of my moment of weakness to finish me up once and for all? But truth is, even though I want to fight on, I'm badly wounded. So badly wounded I can barely stand up on my own. Whats more to protect my 2 little ones. Have you felt this way like I do? Like everything just seem to be wrong. Nothing is okay.
Tomorrow, Charmaine will be having a minor operation for the surgeon to put a temp into her body. They will check her counts and if her CD 4 is zero, we will have to head back to Urgent Care at 9pm to have an injection to boost her CD 4 counts in order for us to harvest her stem cells on Wednesday. I was told that the injection would not have any side effects but coincidentally met a parent here whose daughter got the same injection a couple of months back and suffered from hallucinations for over a week. I was shocked when I heard that. But its not like its anything new really. I mean I have already learned that my path will be strewn with obstacles big and small and it was never meant to be easy. To expect good news is like someone trying to win the lottery or jackpot. But yet everything when I hear another shocker, it still has that effect of freaking me out like the first time, and always never fail to upset me. One will never build an immunity to news like that, it seems.
And depending on the stem cells harvested on Wednesday, we may have to harvest on Thursday as well. And the plan is to start her on the new trial as soon as we manage to harvest enough stem cells from her.
So this is the part where I strive to be like everyone else and repeat the mantra:
IN SPITE OF IT ALL...
Charmaine is still walking/limping/running or whatever you call it, with her rather bow-shaped left leg, not complaining of pain (THANK GOD!). You would never be able to tell that we just received news of bad scan results a week ago and that she has progressed much more. She is still the same girl, smiling, playing, totally oblivious to what's in store this week. And it breaks my heart. I cannot even bear to begin to explain to her what to expect for this week. How is it possible? There must be a huge mistake somewhere. She absolutely do not fit the bill. Am I in denial? I dont know. All I know is that the docs themselves are having a hard time picture her physical reality with her scan reality. NOTHING fits except for that massive black spot on that stupid scan.
I am tormented daily on the decision. Under common circumstances, the child will be put through high dose chemo immediately almost without questioning. But yet, they have proposed a light dose with a new antibody. It definitely wasnt the norm. And I am struggling to convince myself which is better. I dont want to ruin her quality of life with a high dose but can I risk delaying the high dose for 2months while we do a light dose? What happens if she progressed even further? I am SOOOOOOOOOOOOOOOOOOOOO TORN.
But yet, we know that Charmaine's cancer is somewhat resistant to chemo and hence I do not feel safe just doing chemo alone, without something else. Hence, while high dose is norm, I dont know if her cancer cells will be killed or not. I mean those darn cells can even survive all the radiation and continue to multiply!?!?!?!?! ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
On top of all these, I still have to fret about finances and all. Trying to set up new appointments with other hospitals should we run out of options in NY...
I just want to stop, wave my white flag and call for a truce. I miss home. I just want to go back home, lay on the same bed, be that 16 year old girl who can just hide in the room, from the rest of world, have a good cry and not have to carry any responsibilities on my shoulder...
My faith is being rocked big time but if you have faith in me, please help me pray that the operation will go smoothly tomorrow and that we will be able to harvest alot more stem cells than what is required without that hallucinating injection but just GCSF alone. And that we have finally found the right treatment for Charmaine. I NEED THAT MIRACLE NOW.
Love,
Cyn mommy
Another option
Cyn's sms:
"We're trying out another trial, 2 mths, see how she reacts. Also having a minor op next week to put a temp line in. They want to harvest her stem cells *here."
*here meaning the other side of charmaine's chest
Luv,
Jolene
"We're trying out another trial, 2 mths, see how she reacts. Also having a minor op next week to put a temp line in. They want to harvest her stem cells *here."
*here meaning the other side of charmaine's chest
Luv,
Jolene
Scan status
Tuesday, November 23, 2010
Cynthia has informed that the doctor evaluated the scans and have concluded the cancer has progressed and it got worse.
Do pardon Cyn's lack of updates for the next few days.
-
Love,
Charlene
Do pardon Cyn's lack of updates for the next few days.
-
Love,
Charlene
PLEASE PRAY HARD. Scanxiety :-(
Sunday, November 14, 2010
Its the time again...
I am pretending to live life as 'normally' as possible while making sure that I dont get ahead of myself and start taking 2 steps more than what is allowed. I keep breathing and I keep chanting: "one step at a time, one step at a time".
Of course, there is always something new in our routine. Never a dull day really. Last Monday, Charmaine was diagnosed with an ear infection so we are on Antibiotics to treat that infection. On a thankful note, its something treatable!
And since our first chemo in New York, which was more than a month ago, Charmaine has not complained of her right knee pain. HOWEVER, always something new right? A few days ago on Thursday evening, Charmaine suddenly started complaining of pain in her RIGHT KNEE again. DARN IT. That just about killed me there and than.
Left leg pain, I can comfort myself and say "Muscle Spasm!" But why the damn right leg pain re-surface just a few days before scans??? A hundred possibilities flashed in my mind and I simply couldnt stop freaking myself out. I mean, we RADIATED that right femur, not once but TWICE!!! Can you imagine how much damage have I caused to her bone, nerves and muscle and cells and how could the darn cancer cells not be killed? They should have been totally wiped out clean!!! I know I should keep my mind positive and believe me, I am trying ALL THE TIME. Its just so hard! Every complaint of pain is soooooo scary.
And than amidst all the insanity, I told myself, "well, at least its the same area!" Seriously, I feel sick to even think that way; that its good the pain is in the same area. But ya... that was how I tried to calm my nerves. :-(
PLEASE SAY MORE PRAYERS FOR CHARMAINE this coming week. Please pray that all her scans come back clean and good and that we do NOT need to head down the otherwise unimaginable tough road. Please pray that all our scans will go through smoothly and that we can quality for some good trial here in NYC so that we dont have to return to Singapore for high dose chemo.
My mind is mostly blank, so please pardon me if I am incoherent. I am so so so worried that we have to scramble back asap for high dose chemo should the results come out differently from what we pray for. I have a very unsettling mind and a heart that's pumping at a heart-attack rate (I suspect!). I dont know what kind of turn our lives is going to take in a few days, a mere 48 hours from now and it scares the hell out of me. :-(
Love,
Cyn
I am pretending to live life as 'normally' as possible while making sure that I dont get ahead of myself and start taking 2 steps more than what is allowed. I keep breathing and I keep chanting: "one step at a time, one step at a time".
Of course, there is always something new in our routine. Never a dull day really. Last Monday, Charmaine was diagnosed with an ear infection so we are on Antibiotics to treat that infection. On a thankful note, its something treatable!
And since our first chemo in New York, which was more than a month ago, Charmaine has not complained of her right knee pain. HOWEVER, always something new right? A few days ago on Thursday evening, Charmaine suddenly started complaining of pain in her RIGHT KNEE again. DARN IT. That just about killed me there and than.
Left leg pain, I can comfort myself and say "Muscle Spasm!" But why the damn right leg pain re-surface just a few days before scans??? A hundred possibilities flashed in my mind and I simply couldnt stop freaking myself out. I mean, we RADIATED that right femur, not once but TWICE!!! Can you imagine how much damage have I caused to her bone, nerves and muscle and cells and how could the darn cancer cells not be killed? They should have been totally wiped out clean!!! I know I should keep my mind positive and believe me, I am trying ALL THE TIME. Its just so hard! Every complaint of pain is soooooo scary.
And than amidst all the insanity, I told myself, "well, at least its the same area!" Seriously, I feel sick to even think that way; that its good the pain is in the same area. But ya... that was how I tried to calm my nerves. :-(
PLEASE SAY MORE PRAYERS FOR CHARMAINE this coming week. Please pray that all her scans come back clean and good and that we do NOT need to head down the otherwise unimaginable tough road. Please pray that all our scans will go through smoothly and that we can quality for some good trial here in NYC so that we dont have to return to Singapore for high dose chemo.
My mind is mostly blank, so please pardon me if I am incoherent. I am so so so worried that we have to scramble back asap for high dose chemo should the results come out differently from what we pray for. I have a very unsettling mind and a heart that's pumping at a heart-attack rate (I suspect!). I dont know what kind of turn our lives is going to take in a few days, a mere 48 hours from now and it scares the hell out of me. :-(
Love,
Cyn
No answer but new resolution!
Friday, November 5, 2010
This is for all my fellow cancer mom's out there, mother's with children who have other ailments, disabilities and or diseases as well.
So much has happened and in short, we did an emergent X-ray on Monday on her left shin and thankfully, the result was negative. Doctors at MSKCC decided to continue to observe and repeat the scans in mid nov.
But I was still really worried and concern, hence I found a private Orthopedic Surgeon and brought Charmaine to him the next day. He said it was not within his expertise to comment on the cancer, however as far as he could see, Charmaine is having weakened muscles at various parts of her limbs which has caused her to be walking with bad postures, and you know, basically, one thing just leads to another. And the fact that her tiny body has gone through so much toxic treatments, radiation and all the pain, swelling just adds up to make it worse. Hence, Physiotherapy was recommended. I brought her immediately to the Physiotherapist after our session with the Ortho Surgeon on Tuesday. And based on her observation, she feels that on top of her limb muscles being weak, her spine seems to be hyperextended which in turn caused her pelvic to be slanted to a side and hence all the lower limb bad positioning and pain and muscle spasm... And on top of that, she does seem to be developing bow-leg on her left, and another 'big word' type of leg on her right. Basically, its one curved in and the other curved out...
Oh god, it is like an never-ending story, with never-ending twists and turns and never-ending challenges. BREATHEEEEEEEEEEEEEEEEEEE!
Our last 4 days has been packed with doctors' appointments and PT sessions, one after another everyday. It does seem like she is walking a little better... so I am praying very hard that ITS ALL only the side effects of all the toxic treatments and RT and a long road ahead to try and strengthen up whatever needed work.
Our future is still very much one minute, one hour and one day at a time. Nothing more. Because every time I attempt to push this rule a little bit further by foreseeing 2 days at a time, I am always jolted back by a rude awakening only to realise that I have fallen 3 steps behind.
Charmaine has been neutropenic officially since Monday and has been getting her daily painful GCSF shots. To say that she amazes me is a pure understatement. Her courage is something that would make a normal adult like me totally insignificant.
Try picturing this - Char knows how painful the shots are and she knows that she has to be injected daily until her immnuity comes back up to the minimum 1. She does not hide her fear and pain; she screams and cries out so loud that our neighbours can all hear her. Yet, she is the one who will tell me when she is ready, "Okay mommy, I think its time now, I am ready." Everyday without fail. We did this for 7 days last month. She faces her fear and her pain on a daily basis with such gutsy, never back away from it, never move an inch. I have no idea how she does it but she just do.
I am so proud to be the one she calls mother. Its about time I re-focus on learning from Charmaine her strength, her courage and her love for life. This past year has been so painful and so tough that I have entirely forgotten about what this journey is all about. Not about the pain, not about the suffering and not about all the tears shed. More than anything, its all about us learning from Charmaine and her little friends how we should always see the light, the hope, the happiness, the strength and all the love. And its about me growing up to be a better person, to not take things for granted and to treasure 'the present'.
Therefore, as tough as the past few days had been, and as heartbroken as I am today, (just learned that Elizabeth Westberry, our 3F8 roommate and close friend has passed this morning, forever 8), this shall not be a grim and teary entry.
Thanks to a mother who posted the story on her blog, I just remember that I was once known as always overflowing with abundant happiness and laughters. But I have neither played, laughed or smiled heartily in the past few months and I feel horrible that both the kids had to endure a grumpy, crybaby for so long.
I love you Charmaine and I love you Jase. Mommy promise to wake up with a big smile on my face tomorrow no matter WHAT!
Love,
Cyn mommy
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy."
"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute and every day of her life, because she is doing My work as surely as if she is here by My side."
"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."
So much has happened and in short, we did an emergent X-ray on Monday on her left shin and thankfully, the result was negative. Doctors at MSKCC decided to continue to observe and repeat the scans in mid nov.
But I was still really worried and concern, hence I found a private Orthopedic Surgeon and brought Charmaine to him the next day. He said it was not within his expertise to comment on the cancer, however as far as he could see, Charmaine is having weakened muscles at various parts of her limbs which has caused her to be walking with bad postures, and you know, basically, one thing just leads to another. And the fact that her tiny body has gone through so much toxic treatments, radiation and all the pain, swelling just adds up to make it worse. Hence, Physiotherapy was recommended. I brought her immediately to the Physiotherapist after our session with the Ortho Surgeon on Tuesday. And based on her observation, she feels that on top of her limb muscles being weak, her spine seems to be hyperextended which in turn caused her pelvic to be slanted to a side and hence all the lower limb bad positioning and pain and muscle spasm... And on top of that, she does seem to be developing bow-leg on her left, and another 'big word' type of leg on her right. Basically, its one curved in and the other curved out...
Oh god, it is like an never-ending story, with never-ending twists and turns and never-ending challenges. BREATHEEEEEEEEEEEEEEEEEEE!
Our last 4 days has been packed with doctors' appointments and PT sessions, one after another everyday. It does seem like she is walking a little better... so I am praying very hard that ITS ALL only the side effects of all the toxic treatments and RT and a long road ahead to try and strengthen up whatever needed work.
Our future is still very much one minute, one hour and one day at a time. Nothing more. Because every time I attempt to push this rule a little bit further by foreseeing 2 days at a time, I am always jolted back by a rude awakening only to realise that I have fallen 3 steps behind.
Charmaine has been neutropenic officially since Monday and has been getting her daily painful GCSF shots. To say that she amazes me is a pure understatement. Her courage is something that would make a normal adult like me totally insignificant.
Try picturing this - Char knows how painful the shots are and she knows that she has to be injected daily until her immnuity comes back up to the minimum 1. She does not hide her fear and pain; she screams and cries out so loud that our neighbours can all hear her. Yet, she is the one who will tell me when she is ready, "Okay mommy, I think its time now, I am ready." Everyday without fail. We did this for 7 days last month. She faces her fear and her pain on a daily basis with such gutsy, never back away from it, never move an inch. I have no idea how she does it but she just do.
I am so proud to be the one she calls mother. Its about time I re-focus on learning from Charmaine her strength, her courage and her love for life. This past year has been so painful and so tough that I have entirely forgotten about what this journey is all about. Not about the pain, not about the suffering and not about all the tears shed. More than anything, its all about us learning from Charmaine and her little friends how we should always see the light, the hope, the happiness, the strength and all the love. And its about me growing up to be a better person, to not take things for granted and to treasure 'the present'.
Therefore, as tough as the past few days had been, and as heartbroken as I am today, (just learned that Elizabeth Westberry, our 3F8 roommate and close friend has passed this morning, forever 8), this shall not be a grim and teary entry.
Thanks to a mother who posted the story on her blog, I just remember that I was once known as always overflowing with abundant happiness and laughters. But I have neither played, laughed or smiled heartily in the past few months and I feel horrible that both the kids had to endure a grumpy, crybaby for so long.
I love you Charmaine and I love you Jase. Mommy promise to wake up with a big smile on my face tomorrow no matter WHAT!
Love,
Cyn mommy
It's Halloween here.
Sunday, October 31, 2010
Jase and Char had the day filled with Halloween activities today and tire themselves out entirely. They are now sound asleep.
I don't know what the pain on her shin means and I don't know if it was her shin that she was experiencing the pain or they could be entirely different areas of pain. Whatever that means, it just sucks big time! I'm angry, I'm so pissed at this damn thing called cancer!!! If it's something I could kill, I would turn myself into some montrous killer and kill this beast a thousand times and it would never even be enough to justify all the pain of the families whose kids are so cruelly ripped away and all that our little ones have gone through!!!
I'm so fearful, so worried and so anxious that I don't know what to think! All I know is that it's just NOT good to have all this pain while we just completed 5 days of chemo! The poison should have killed all the beast and there should be no pain... Every mention of the word 'painful' literally rocks my world violently. The chill and tremble that my body involuntarily reacts from the word 'PAIN' is beyond any normal healthy person's comprehension and no one should ever have to understand it either. Because it's almost inhumane.
Alot of my friends always tell me to trust my own instincts because a mother's instinct is unusually precise. At this moment, I am hoping that I am so wrong! I cannot stop worrying and I cannot stop thinking either. I'm still pretty sure that her left leg doesn't look right but in a very sick way, I'm almost feeling 0.1% relieved that I think I figured out this new area of pain. But yet, I'm so heartbroken... Why is it her shin? She never had disease on her shin. It shouldn't be coming from anywhere except her left femur. In fact, there simply should be no pain! Can you feel my agony and my frustrations and how sick this whole situation is? I don't want pain and I hate the pain but yet I'm somewhat relieved I found the site of the pain and yet it's tearing me apart with what I found!!!
Tomorrow is Sunday. I will have to live through one more day of hell. How ironical. It's actually Halloween day tmr so seems like I'm already in the right dark mood. Anyway, I already emailed Dr Kushner and we shall hear what the doctors make out of this whole insanity in my life. More scans maybe??? I dunno. Please don't ask me how... I simply dunno...
Charmaine is still walking with a slight limp and yet continued to dance through the Halloween party tonight. I'm glad that while she's really tired from the chemo, she really seem to enjoy herself so much. Nevertheless, seeing all these kids dance, laugh and play makes our reality a thousand times more painful. They all look so happy... And every now and than, you may look at one of the few whom you know their time is almost up... It's so hard, so tough I have no idea how medical professionals even live their lives like this on a daily basis. I can't, I simply can't. It's too painful and it's eating me away... Every single day. And the truth is I'm not left with much...
With your blessings and prayers, may the light finally shine on us, shine on my little princess and give us the miracle that I've been praying so hard for everyday... Please say a few more prayers if you could spare us some. I'm so worn out and I feel beaten... And the verdict is not even out yet!
Please pray that Charmaine's pain is healed overnight and her left leg will be as normal as any 5 year old can be. Please pray that there is no progression, the cancer did not spread and that Charmaine will win this battle and return to life of schooling and growing up normally.
Thank you all.
Love,
Cyn mommy
I don't know what the pain on her shin means and I don't know if it was her shin that she was experiencing the pain or they could be entirely different areas of pain. Whatever that means, it just sucks big time! I'm angry, I'm so pissed at this damn thing called cancer!!! If it's something I could kill, I would turn myself into some montrous killer and kill this beast a thousand times and it would never even be enough to justify all the pain of the families whose kids are so cruelly ripped away and all that our little ones have gone through!!!
I'm so fearful, so worried and so anxious that I don't know what to think! All I know is that it's just NOT good to have all this pain while we just completed 5 days of chemo! The poison should have killed all the beast and there should be no pain... Every mention of the word 'painful' literally rocks my world violently. The chill and tremble that my body involuntarily reacts from the word 'PAIN' is beyond any normal healthy person's comprehension and no one should ever have to understand it either. Because it's almost inhumane.
Alot of my friends always tell me to trust my own instincts because a mother's instinct is unusually precise. At this moment, I am hoping that I am so wrong! I cannot stop worrying and I cannot stop thinking either. I'm still pretty sure that her left leg doesn't look right but in a very sick way, I'm almost feeling 0.1% relieved that I think I figured out this new area of pain. But yet, I'm so heartbroken... Why is it her shin? She never had disease on her shin. It shouldn't be coming from anywhere except her left femur. In fact, there simply should be no pain! Can you feel my agony and my frustrations and how sick this whole situation is? I don't want pain and I hate the pain but yet I'm somewhat relieved I found the site of the pain and yet it's tearing me apart with what I found!!!
Tomorrow is Sunday. I will have to live through one more day of hell. How ironical. It's actually Halloween day tmr so seems like I'm already in the right dark mood. Anyway, I already emailed Dr Kushner and we shall hear what the doctors make out of this whole insanity in my life. More scans maybe??? I dunno. Please don't ask me how... I simply dunno...
Charmaine is still walking with a slight limp and yet continued to dance through the Halloween party tonight. I'm glad that while she's really tired from the chemo, she really seem to enjoy herself so much. Nevertheless, seeing all these kids dance, laugh and play makes our reality a thousand times more painful. They all look so happy... And every now and than, you may look at one of the few whom you know their time is almost up... It's so hard, so tough I have no idea how medical professionals even live their lives like this on a daily basis. I can't, I simply can't. It's too painful and it's eating me away... Every single day. And the truth is I'm not left with much...
With your blessings and prayers, may the light finally shine on us, shine on my little princess and give us the miracle that I've been praying so hard for everyday... Please say a few more prayers if you could spare us some. I'm so worn out and I feel beaten... And the verdict is not even out yet!
Please pray that Charmaine's pain is healed overnight and her left leg will be as normal as any 5 year old can be. Please pray that there is no progression, the cancer did not spread and that Charmaine will win this battle and return to life of schooling and growing up normally.
Thank you all.
Love,
Cyn mommy
Hoping that all is a bad nightmare
Saturday, October 30, 2010
Not in the mood to write at all... But NEED all the prayers I can get for a miracle...
I MUST BE WRONG...
My facebook status:
I've lived 623 days of my life not knowing anything except cancer. Used up all my smiles, lost the ability to play, forgotten what it's like to be a human, barely remembers my friends' birthdays and yet, I just seemingly found the source of her left leg pain - not her left knee, not her left thigh BUT her LEFT SHIN. Feels like I'm hit with another blow at my already bleeding wound.
I must be over reacting and wrong right??????
I MUST BE WRONG...
My facebook status:
I've lived 623 days of my life not knowing anything except cancer. Used up all my smiles, lost the ability to play, forgotten what it's like to be a human, barely remembers my friends' birthdays and yet, I just seemingly found the source of her left leg pain - not her left knee, not her left thigh BUT her LEFT SHIN. Feels like I'm hit with another blow at my already bleeding wound.
I must be over reacting and wrong right??????
Chemo Number #15
Wednesday, October 27, 2010
Hi everyone,
Its Tuesday and we are onto our day 2 out of 5 days of chemo. Cycle number #15 for my princess warrior Char. One of the nurses at KKH wrote in her facebook status: "Have you heard of anyone who has a heart full of poison but with a mouth which spills sweet honey??" Thats my sentiments exactly. A heart full of poison, with consent given by her own mom, to try to combat the beast in her, all the while breaking her immune and damaging her healthy organs. If only it works the same way as those unrealistic soap dramas, neutralizing one poison with another poison. In reality, nothing is quite neutralized, at least in my opinion, the trade-off is so huge it makes all other problems in life seem insignificant.
We had a good week! Despite the left knee pain coming on and off, Char was able to tolerate her pain and still participate in the daily activities organized by the house. Like always, THIS IS A PRICELESS GIFT.
Last week, Jase and Charmaine had their photo-taking session with their classmates. As Charmaine was still having radiation, she couldnt attend class and I had to bring her in just for a quick picture. I stood by the side, like a really proud mom, staring at her, standing amongst her classmates, having her first class photo taken since she was 3 and once again, tears streaked down my face uncontrollably. Who would have thought a simple class photo-taking session would evoke such bittersweet emotions from a silly mom. In fact, I find myself getting teary over the simplest things more often than not. Simple things that didnt mean much to me previously, simple things that I could take for granted, simple things that I thought didnt need any effort protecting... I found myself fighting so hard everyday just to allow Charmaine to have a chance to do simple things, to be a simple girl, like you and I. A simple thing like going to school, a simple thing like taking a class photograph... If you are one of the many students, dreading to wake up early to go to school, think of Charmaine and many of her friends with not even a chance to dread and complain...
I have been focusing on fighting cancer and getting through each day alive so much so that I had forgotten I have 2 beautiful kids growing up each single day. And I do mean it literally. Graduating from Kindergarten, admission into Primary One, dropping of their first milk tooth which are all wonderful significant milestones that have totally been replaced by WHEN we get over the operation safely, WHEN we finish up our last chemo, WHEN we can remove her port-a-cath and celebration our new lease of lives... these are all the milestones in my life now... Such an irony, I cant wait for cancer to disappear and get out of my life and yet, the milestones in my life are marked by cancer entirely.
Hence, in the past week, I was pleasantly reminded by my 2 babies just how much alive they are and how they have grown! Jase would suddenly take up my phone and start reading my text messages aloud. I was freaked. Now I have one less avenue to keep my secrets. Its funny how I was always whining to him about how he couldnt read and spell but when the ability of his reading skills were put to test on my stuff, I almost wished that he was still the baby toddler who couldnt dig into my secrets. :-)
As for my dear princess Char, the fact that she sobbed so sadly over her lost hair has not only got me so depressed but also highlighted the fact that she has grown up to be a little lady, so conscious of her looks... Even the discussions we have everyday pertaining to treatments have taken a whole new level with her increased level of understanding and conception. Its interesting though that ever since the first day of her diagnosis, I've never failed to inform her of our next admission for chemo, next blood test, next appointment with the doctor so she pretty much understood since day 1 and yet, the reaction when I got from my 3 year old Charmaine is interestingly different from my 5 year old Charmaine.
And wait till the next time when I share with you the story about the few "MATURED" adults we bumped into while we were outside, in a mall checking some of the winter gear. The incidents that I sorely remember. All interestingly on the same day. The day I found out my son could pronounce 'Neuroblastoma' better than some of you can say 'Interesting'.
It happened the week before we were leaving for New York, when we were out. Quite a handful of head-turners over Charmaine's baldness. I was aware and I was frustrated, but I did nothing. Once, a salesperson had purposefully waited for me to walk a little far from the kids and went up to Jase to ask him, "WHY DOES YOUR SISTER HAVE NO HAIR?" Of course, they had asked, making sure I wasnt aware but when I was walking towards Jase and Char, I saw them talking to Jase, I asked him what happened. To my astonishment, he repeated what they had asked and what he had told them which was, quite frankly, a shock to me. He said: "My sister has cancer. She has neuroblastoma, and thats why she doesnt have hair." It was a shock that I dont know how to describe. Him, pronouncing 'Neuroblastoma' so clearly like a doctor was not what I had expected and imagined.
Aside from my shock, I was definitely upset, very upset with the adults. Arent they supposed to be the adults here? Why did they do such sneaky things behind me, to 2 kids, a quarter of their age! What would be going through Charmaine's little head? And to be such sneaky animals to sneak behind me and go up to Jase instead!?!?! I am beyond mad, really. I just held both their hands and walked off. It took every ounce of my energy not to walk up to them and just let them know how hurt I was.
That was NOT ALL that happened that day. We went for lunch and yet again, from afar I saw a man staring blatantly. Another sneaky one. When I left them at the table while I go grab food, I found the man sitting on the table besides ours, with his seat behind Jase's and he was facing our table, talking to Jase. When he saw me walked over, he spinned around to face away from our table. I asked Jase what happened and he basically said the same thing, "WHY DOESNT YOUR SISTER HAVE HAIR?" ARGH. I think you could probably sense my hurt, my frustration, and my urge to scream at them, "If you have a freaking question, why couldnt you walk up to me and ask me instead? Why are you being a sneaky cat, going up to my son when I am not around to question him? Imagine me doing that to you!" ARGH.
I have to end this because its dinner time.
Just want to say we are good. :-)
Take care everyone!
Love,
Cyn mommy
PS: Pardon me for ranting. I think I kept it in my heart for too long, just had to blur it out.
Its Tuesday and we are onto our day 2 out of 5 days of chemo. Cycle number #15 for my princess warrior Char. One of the nurses at KKH wrote in her facebook status: "Have you heard of anyone who has a heart full of poison but with a mouth which spills sweet honey??" Thats my sentiments exactly. A heart full of poison, with consent given by her own mom, to try to combat the beast in her, all the while breaking her immune and damaging her healthy organs. If only it works the same way as those unrealistic soap dramas, neutralizing one poison with another poison. In reality, nothing is quite neutralized, at least in my opinion, the trade-off is so huge it makes all other problems in life seem insignificant.
We had a good week! Despite the left knee pain coming on and off, Char was able to tolerate her pain and still participate in the daily activities organized by the house. Like always, THIS IS A PRICELESS GIFT.
Last week, Jase and Charmaine had their photo-taking session with their classmates. As Charmaine was still having radiation, she couldnt attend class and I had to bring her in just for a quick picture. I stood by the side, like a really proud mom, staring at her, standing amongst her classmates, having her first class photo taken since she was 3 and once again, tears streaked down my face uncontrollably. Who would have thought a simple class photo-taking session would evoke such bittersweet emotions from a silly mom. In fact, I find myself getting teary over the simplest things more often than not. Simple things that didnt mean much to me previously, simple things that I could take for granted, simple things that I thought didnt need any effort protecting... I found myself fighting so hard everyday just to allow Charmaine to have a chance to do simple things, to be a simple girl, like you and I. A simple thing like going to school, a simple thing like taking a class photograph... If you are one of the many students, dreading to wake up early to go to school, think of Charmaine and many of her friends with not even a chance to dread and complain...
I have been focusing on fighting cancer and getting through each day alive so much so that I had forgotten I have 2 beautiful kids growing up each single day. And I do mean it literally. Graduating from Kindergarten, admission into Primary One, dropping of their first milk tooth which are all wonderful significant milestones that have totally been replaced by WHEN we get over the operation safely, WHEN we finish up our last chemo, WHEN we can remove her port-a-cath and celebration our new lease of lives... these are all the milestones in my life now... Such an irony, I cant wait for cancer to disappear and get out of my life and yet, the milestones in my life are marked by cancer entirely.
Hence, in the past week, I was pleasantly reminded by my 2 babies just how much alive they are and how they have grown! Jase would suddenly take up my phone and start reading my text messages aloud. I was freaked. Now I have one less avenue to keep my secrets. Its funny how I was always whining to him about how he couldnt read and spell but when the ability of his reading skills were put to test on my stuff, I almost wished that he was still the baby toddler who couldnt dig into my secrets. :-)
As for my dear princess Char, the fact that she sobbed so sadly over her lost hair has not only got me so depressed but also highlighted the fact that she has grown up to be a little lady, so conscious of her looks... Even the discussions we have everyday pertaining to treatments have taken a whole new level with her increased level of understanding and conception. Its interesting though that ever since the first day of her diagnosis, I've never failed to inform her of our next admission for chemo, next blood test, next appointment with the doctor so she pretty much understood since day 1 and yet, the reaction when I got from my 3 year old Charmaine is interestingly different from my 5 year old Charmaine.
And wait till the next time when I share with you the story about the few "MATURED" adults we bumped into while we were outside, in a mall checking some of the winter gear. The incidents that I sorely remember. All interestingly on the same day. The day I found out my son could pronounce 'Neuroblastoma' better than some of you can say 'Interesting'.
It happened the week before we were leaving for New York, when we were out. Quite a handful of head-turners over Charmaine's baldness. I was aware and I was frustrated, but I did nothing. Once, a salesperson had purposefully waited for me to walk a little far from the kids and went up to Jase to ask him, "WHY DOES YOUR SISTER HAVE NO HAIR?" Of course, they had asked, making sure I wasnt aware but when I was walking towards Jase and Char, I saw them talking to Jase, I asked him what happened. To my astonishment, he repeated what they had asked and what he had told them which was, quite frankly, a shock to me. He said: "My sister has cancer. She has neuroblastoma, and thats why she doesnt have hair." It was a shock that I dont know how to describe. Him, pronouncing 'Neuroblastoma' so clearly like a doctor was not what I had expected and imagined.
Aside from my shock, I was definitely upset, very upset with the adults. Arent they supposed to be the adults here? Why did they do such sneaky things behind me, to 2 kids, a quarter of their age! What would be going through Charmaine's little head? And to be such sneaky animals to sneak behind me and go up to Jase instead!?!?! I am beyond mad, really. I just held both their hands and walked off. It took every ounce of my energy not to walk up to them and just let them know how hurt I was.
That was NOT ALL that happened that day. We went for lunch and yet again, from afar I saw a man staring blatantly. Another sneaky one. When I left them at the table while I go grab food, I found the man sitting on the table besides ours, with his seat behind Jase's and he was facing our table, talking to Jase. When he saw me walked over, he spinned around to face away from our table. I asked Jase what happened and he basically said the same thing, "WHY DOESNT YOUR SISTER HAVE HAIR?" ARGH. I think you could probably sense my hurt, my frustration, and my urge to scream at them, "If you have a freaking question, why couldnt you walk up to me and ask me instead? Why are you being a sneaky cat, going up to my son when I am not around to question him? Imagine me doing that to you!" ARGH.
I have to end this because its dinner time.
Just want to say we are good. :-)
Take care everyone!
Love,
Cyn mommy
PS: Pardon me for ranting. I think I kept it in my heart for too long, just had to blur it out.
Falling hair, like the falling leaves of Autumn
Tuesday, October 19, 2010
I wanted to blog a few days ago but I didnt know what to write... Now, I wished I had blogged a few days ago because it would at least have been a boring but blissful entry.
Nothing much unusual the past week for us, in fact, nothing much unsual is a great gift to us, especially me. We had a good time, being ‘normal’ and during those few moments, cancer wasnt the dreadful monster because I think I sort of forgotten it. While it was extremely tiring for me, because of our daily morning radiation and shuttering between hospital and school, Charmaine was walking, smiling, laughing, being the cheeky monkey she is! And THAT IS PRICELESS.
Last week, I was also on the watch out for falling hair... however it didnt happen and as we got more busy, I had totally forgotten abt falling hair... Even with Charmaine admiring and commenting on her hair 24/7, I had clearly forgotten all about falling hair...
This morning, reality struck. And how cruel can it be.
I noticed them falling off almost everywhere. Charmaine hadnt realised it until just a couple of mins ago when we are all getting ready to go to bed. She took one look at her pillow (which I had stupidly forgotten to clean) and than started crying very sadly. I didnt know what to say. Tried to stop my tears from falling. Jase went quiet hearing Charmaine cry and than all of a sudden, he said: “You are making me cry too...” . Before I know it, we were all hurdled together, sobbing. I think to an onlooker, we might really seem ridiculous, crying because of falling hair which will grow and regrow... To be honest, I find it ridiculous myself. Why am I crying over falling hair? This really seems insignificant compared to the big picture. But its my baby’s tears, my baby’s sorrow, my baby’s cries that is burning my soul... When will she get a break...
There were things mentioned to me by the doctors that I never mentioned before... Words that has been rining in my ears since Char has been considered to have progressed.
CHRONIC NEUROBLASTOMA
Even typing out the word ‘chronic’ makes my hands tremble... Everyday, we learn something new, dont we? Everyday, I learn the scary, frightening emotions a new word can inflict onto me. They say that one will never be able to look at the same person the same way they used to do once they get hurt. I, instead, will never be able to look at WORDS, the same way I used to do.
What does ‘Chronic’ mean to us?
Doctors fear that Charmaine’s cancer is displaying symptoms of being resistant to chemo, hence the progression. However, it also seem to be growing slowly... In terms of treatment, our GOAL, our focus that I have always been looking forward to may take a long long time to reach... Basically, Charmaine will ALWAYS need some sort of treatment until we find a CURE for this sick monster.
Subconciously, this has probably been the biggest reason why I have not been blogging as much... on top of us being really busy with treatments. And now, with her getting so upset over her hair loss, and with me knowing that she will probably not stop treatments until our miracle happens, it just makes me even more upset...
I think I am not in the right frame of mind to write tonight...
Please allow me to copy another NB mommy’s words which describes my feelings entirely...
Love,
Cyn mommy
Nothing much unusual the past week for us, in fact, nothing much unsual is a great gift to us, especially me. We had a good time, being ‘normal’ and during those few moments, cancer wasnt the dreadful monster because I think I sort of forgotten it. While it was extremely tiring for me, because of our daily morning radiation and shuttering between hospital and school, Charmaine was walking, smiling, laughing, being the cheeky monkey she is! And THAT IS PRICELESS.
Last week, I was also on the watch out for falling hair... however it didnt happen and as we got more busy, I had totally forgotten abt falling hair... Even with Charmaine admiring and commenting on her hair 24/7, I had clearly forgotten all about falling hair...
This morning, reality struck. And how cruel can it be.
I noticed them falling off almost everywhere. Charmaine hadnt realised it until just a couple of mins ago when we are all getting ready to go to bed. She took one look at her pillow (which I had stupidly forgotten to clean) and than started crying very sadly. I didnt know what to say. Tried to stop my tears from falling. Jase went quiet hearing Charmaine cry and than all of a sudden, he said: “You are making me cry too...” . Before I know it, we were all hurdled together, sobbing. I think to an onlooker, we might really seem ridiculous, crying because of falling hair which will grow and regrow... To be honest, I find it ridiculous myself. Why am I crying over falling hair? This really seems insignificant compared to the big picture. But its my baby’s tears, my baby’s sorrow, my baby’s cries that is burning my soul... When will she get a break...
There were things mentioned to me by the doctors that I never mentioned before... Words that has been rining in my ears since Char has been considered to have progressed.
CHRONIC NEUROBLASTOMA
Even typing out the word ‘chronic’ makes my hands tremble... Everyday, we learn something new, dont we? Everyday, I learn the scary, frightening emotions a new word can inflict onto me. They say that one will never be able to look at the same person the same way they used to do once they get hurt. I, instead, will never be able to look at WORDS, the same way I used to do.
What does ‘Chronic’ mean to us?
Doctors fear that Charmaine’s cancer is displaying symptoms of being resistant to chemo, hence the progression. However, it also seem to be growing slowly... In terms of treatment, our GOAL, our focus that I have always been looking forward to may take a long long time to reach... Basically, Charmaine will ALWAYS need some sort of treatment until we find a CURE for this sick monster.
Subconciously, this has probably been the biggest reason why I have not been blogging as much... on top of us being really busy with treatments. And now, with her getting so upset over her hair loss, and with me knowing that she will probably not stop treatments until our miracle happens, it just makes me even more upset...
I think I am not in the right frame of mind to write tonight...
Please allow me to copy another NB mommy’s words which describes my feelings entirely...
SO...Because, there isn't a specific cure for Neuroblastoma, the goal is to always stay one step ahead of it. The only way we can do this is through the TRIAL THERAPIES that are available through limited funding for our kids. So in hindsight, we all need a cure to save our kids, which is simply....NOT THERE....so we use what is available to stay ahead of the game until the next "TRIAL" is available to add to our arsenals. GOT IT??. NB acts differently in every child, and there is NO ONE CLEAR CUT WAY TO GO AT IT, which creates a bigger challenge for research. It is a diabolical hell in retrospect to be at the mercy of this cowardly bastard of a disease that reeks havoc on our kids, but then you have to thank it for being as kind as it has by not taking their lives entirely, even with all it has done.....MY APPLICATION FOR THE CRAZY HOUSE, now complete.
By Francesa Demers~~~
Love,
Cyn mommy
One step at a time...
Saturday, October 9, 2010
Once again, I have no idea where I last stopped with our updates and I am getting increasingly confused with dates and events. Memories are jumbled and emotions are all over the place.
Nevertheless, we continue to try and make the best of what we have and pray for the best on a daily basis. Some days, it gets tougher, while some days, the simple pleasures are enough to make me forget our challenges momentarily.
On a typical difficult day, PAIN is something we struggle to deal with. Charmaine, having to cope with the excruciating pain and the physical discomfort of being immobile. Myself, often crumbling at the sight of seeing my own baby suffer and crying, and yet I am totally helpless. Jase, having to help me run around while Charmaine is immobile.
On the other few good days, with no pains, no fevers, no hospital appointments, and no chemos, we get to be like your average family! Waking up to a lazy Sunday morning, with no plans other than rest, play, eat and poop, it is such a joy. We get to smile, laugh, complain about the cold, whine about the boredom, stress about what to have for lunch and dinner.
In terms of treatment, Charmaine has completed 5 days of chemo (Cyclo/Topo); her #14 cycle on 1st Oct. In the past week, Charmaine has also completed 3 sessions out of the scheduled 10 sessions of radiation to both her femurs, which will run through to 19th Oct.
Charmaine’s right knee pain subsided on the day after we completed chemo. Coincidence or chemo at work, guess we will never know. But our ‘normal’ life always seems so short-lived. Barely 6 days later, yesterday she started to walk with a limp again. BUT THIS TIME ITS HER LEFT KNEE. Do you know how she moves around the room? She uses her butt to ‘slide’ around like a snail... My heart aches so much. However, she remains cheeky and cheerful. She would always giggle and laugh and seem to enjoy her new found mobility. Charmaine is the reason why my heart is numbed with pain, and yet SHE is also the reason that I am still able to see hope and feel the happiness.
On the 8th day post chemo, when we tested Charmaine’s counts, it has already dropped to zero, nothing. That means she has no immunity at all. This is what I fear most and is also the reason why I dread high dose chemo so much... The chemo that Charmaine just did, is supposedly light and some kids never even go neutropenic. Yet, my dear baby, not only does she goes completely neutropenic, she also reaches neutropenia at a much shorter time. Usually, the body’s immunity gets hit only around day #14 and recovers around day #21. But Charmaine’s immnunity reaches zero almost after we complete the chemo... It really sucks... All these just mean one thing, that her bone marrow is so so so weak now... so weak that the danger of her bone marrow not recovering on its own is getting higher and higher...
Everyday for the past week, I have pretty much been living with constant fear, worry and paranoia. Her being neutropenic means that if she spikes a fever, it will be a direct admission into inpatient ward and over here, we have to stay much longer until her ANC reaches 0.5! (May take almost 2 weeks since they bounce up around day #21.)
Neutropenic from the light chemo, and daily radiation just means that her counts will be further suppressed. So she is going to remain neutropenic for a much longer time... and of course, transfusions wouldnt be a surprise. In fact, Charmaine had her first blood and platelet transfusions yesterday.
Neutropenic, the immobility that comes with pain, the constipation that comes with immobility, fever risk, low platelets and blood... these are Charmaine’s daily challenges and my daily worries and fears...
The past week, I have to drag both Jase and Charmaine up by 6am, rush to hospital, wait for Charmaine to complete her radiation and rush both of them down to school to drop Jase off, and than rush back to hospital again for more procedures, if necessary. And of course, everyday, I have to keep track of the timing, making sure that we rush back to school in time to pick Jase up from school. And if not, I have to call for help...
Alright, thats pretty much what is going on in our lives while I have not been updating... Its time for me to go check out on the kids...
May everyone be blessed with happiness and good health.
Love,
Cyn mommy
PS: We won the USD $250,000 grant for MSKCC, thanks to everyone single one of you who have been voting daily for us. THANK YOU SO MUCH. With options running low, this means too much to me!
Nevertheless, we continue to try and make the best of what we have and pray for the best on a daily basis. Some days, it gets tougher, while some days, the simple pleasures are enough to make me forget our challenges momentarily.
On a typical difficult day, PAIN is something we struggle to deal with. Charmaine, having to cope with the excruciating pain and the physical discomfort of being immobile. Myself, often crumbling at the sight of seeing my own baby suffer and crying, and yet I am totally helpless. Jase, having to help me run around while Charmaine is immobile.
On the other few good days, with no pains, no fevers, no hospital appointments, and no chemos, we get to be like your average family! Waking up to a lazy Sunday morning, with no plans other than rest, play, eat and poop, it is such a joy. We get to smile, laugh, complain about the cold, whine about the boredom, stress about what to have for lunch and dinner.
In terms of treatment, Charmaine has completed 5 days of chemo (Cyclo/Topo); her #14 cycle on 1st Oct. In the past week, Charmaine has also completed 3 sessions out of the scheduled 10 sessions of radiation to both her femurs, which will run through to 19th Oct.
Charmaine’s right knee pain subsided on the day after we completed chemo. Coincidence or chemo at work, guess we will never know. But our ‘normal’ life always seems so short-lived. Barely 6 days later, yesterday she started to walk with a limp again. BUT THIS TIME ITS HER LEFT KNEE. Do you know how she moves around the room? She uses her butt to ‘slide’ around like a snail... My heart aches so much. However, she remains cheeky and cheerful. She would always giggle and laugh and seem to enjoy her new found mobility. Charmaine is the reason why my heart is numbed with pain, and yet SHE is also the reason that I am still able to see hope and feel the happiness.
On the 8th day post chemo, when we tested Charmaine’s counts, it has already dropped to zero, nothing. That means she has no immunity at all. This is what I fear most and is also the reason why I dread high dose chemo so much... The chemo that Charmaine just did, is supposedly light and some kids never even go neutropenic. Yet, my dear baby, not only does she goes completely neutropenic, she also reaches neutropenia at a much shorter time. Usually, the body’s immunity gets hit only around day #14 and recovers around day #21. But Charmaine’s immnunity reaches zero almost after we complete the chemo... It really sucks... All these just mean one thing, that her bone marrow is so so so weak now... so weak that the danger of her bone marrow not recovering on its own is getting higher and higher...
Everyday for the past week, I have pretty much been living with constant fear, worry and paranoia. Her being neutropenic means that if she spikes a fever, it will be a direct admission into inpatient ward and over here, we have to stay much longer until her ANC reaches 0.5! (May take almost 2 weeks since they bounce up around day #21.)
Neutropenic from the light chemo, and daily radiation just means that her counts will be further suppressed. So she is going to remain neutropenic for a much longer time... and of course, transfusions wouldnt be a surprise. In fact, Charmaine had her first blood and platelet transfusions yesterday.
Neutropenic, the immobility that comes with pain, the constipation that comes with immobility, fever risk, low platelets and blood... these are Charmaine’s daily challenges and my daily worries and fears...
The past week, I have to drag both Jase and Charmaine up by 6am, rush to hospital, wait for Charmaine to complete her radiation and rush both of them down to school to drop Jase off, and than rush back to hospital again for more procedures, if necessary. And of course, everyday, I have to keep track of the timing, making sure that we rush back to school in time to pick Jase up from school. And if not, I have to call for help...
Alright, thats pretty much what is going on in our lives while I have not been updating... Its time for me to go check out on the kids...
May everyone be blessed with happiness and good health.
Love,
Cyn mommy
PS: We won the USD $250,000 grant for MSKCC, thanks to everyone single one of you who have been voting daily for us. THANK YOU SO MUCH. With options running low, this means too much to me!
We're at Day 3 of 5 for chemo
Thursday, September 30, 2010
We are at Day 3 out of 5 for our chemo today, sitting at the Waiting Area for an Isolation Room.
This is Charmaine’s Cycle #14 chemotherapy and it doesnt look like we are nearing that ‘End Point’ I’ve always been praying for and looking forward to... However, she is here, watching her ‘High Five’ DVD and singing along to the tunes. And this IS the moment that I should treasure and consider myself blessed.
The past week has definitely taken such a toil on me, both physically and emotionally. In fact, it felt like the month of September was just full of turns and twists; tears and pain, and quite frankly, nothing memorable.
Even as we speak right now, the diagnosis is still somewhat inconclusive and our treatment plans are also somewhat in limbo.
Each doctor within the NB team seem to have extremely different opinions and it's honestly very hard to know who is correct. By extremely different, I do mean it literally.
One day, a doctor walked up to me and tell me its “MUCH IMPROVED”, as compared to the clean results we had in Singapore. I just crumbled. Yes, it could have been worse but it still hurts to know that its not clean.
Next day, another doctor walked up to me and told me its bad, because it looked like progressive disease to them.
For the non-cancer savy, PROGRESSIVE is NEVER used in a good way in CANCER WORLD.
And then I would cry a sea of tears, breaking apart completely and just wishing that I will just stop breathing literally. I am not sure if I was even functioning but I just couldnt pick myself up... However, as much as I wish to freeze time and turn everything to a complete stand-still, life continues... And I continue to function after the tears dried up.
And before you know it, another doctor will give you another picture...
Yesterday, after all the loud crying, insane screaming and quiet sobbing for days and days, we met up with her Radiation Oncologist, Dr Suzanne Wolden.
For the first time in days, I am suddenly seeing a very very very faint light coming through our tunnel of complete darkness. It isn't the light that I was wishing for, nonetheless, her compassionate self and her concern over the diagnosis gave me a sense of warmth I so needed.
Of course, nothing went according to plan yesterday. WHY am I NOT SURPRISED?
Yesterday, the plan was for us to go in and meet with Dr Wolden, to discuss all the dreadful side effects of the higher dose of radiation that I had decided to do to both Charmaine’s femurs and possibly stunt her growth, partially or completely. It was really not a morning that you will wake up to, feeling bright and happy.
Dr Wolden was our Radiation Oncologist last year when we radiated her liver and I remember her as one of the nicest ladies, truly having a passion in wanting to help us treat our kids. We talked to her assistants while waiting for her and her assistants were just as good as she is. Finally, when Dr Wolden came, the first thing she said was:
I didnt know what to think or feel. I’ve gone through TOO MANY UPS AND DOWNS (actually it felt like it was just going down, and deeper down...) the past week, I honestly dont know what is real and what is not.
What is truth at this moment and what is real factual truth.
We mainly talked abt her right femur. Hence I asked about her left femur and she said she thought the same of the left, that it was not clear cut progressive. I asked for her opinions on what she felt was an option for Charmaine. She said she would actually feel comfortable to not do much, maybe a light chemo, allow Charmaine to have a good quality of life and re-scan in 3 months, after Christmas, to track the results and have a better idea of what is going on.
I know she is not an oncologist that treats Neuroblastoma specifically but more a radiation expert, and that her opinions may not count towards the team BUT her words have most certainly provided me a MUCH NEEDED perspective. THE perspective that I never thought was possible because everything was so grim and dark when we discussed with the other NB experts last week and who am I to question their judgement.
Amidst the grey skies, it suddenly dawned upon me that the day I met Dr Wolden was Tuesday and if i hadnt begged for another option, Charmaine would have already been on Day 2 of ICE --THE CHEMO THAT WILL COMPLETELY WIPE CHARMAINE IMMUNE OUT, AND MAY CAUSE HALLUCINATION, CONFUSION, LOSS OF MEMORY. I even had one father email me that his son went into a semi-conscious state while doing ICE. It IS THE CHEMO I’ve always dreaded.
Oh God, I simply couldnt even imagine WHAT IF I had gone ahead with their suggestion of ICE and now, this doubt of HOW true that the disease is progressive is being questioned and brought up, what terrible terrible mistake would that be!
I have not heard back from anyone yet. We are doing a light chemo now which gives me a little comfort that we are not giving her cancer cells a break to grow. And hopefully, this will give the team some time to re-organise their thoughts and plans. There are many many questions and decisions going through my head each day, but without a proposal from the team, I cannot do anything except to worry and stress.
On top of cancer, I have to continually worry about her knee which is acting up this morning again. SHE NEVER GETS A BREAK. And last weekend, her temperature spiked up and she had a bout of FEVER. [It was another drama on its own, but I am too physically drained now to even start narrating it.
I had SO MANY BREAKING POINTS last week alone that I had no idea how I am even alive today. I fear about her cancer, I worry about her knee pain, I am highly stressed over her having fever.
Jase gives me a different set of worries, making sure his homework is done, making sure he is fed, making sure he goes to school on time, making sure that I can pick him up from school on time...
“I just want to go home...”
“I just want to hug someone and cry till I fall asleep.”
“I need to give my heart a break, my mind a rest, my body a good sleep... maybe than I can pick up the pieces, carry all my worries and fears and continue to plough forth...”
Sorry I cant continue more, because this just makes me want to cry so bad...
Anyway, I just want say that despite all the ups and downs, all the insanities in our lives, we are OKAY. I am sorry to have made everyone worried... Please continue to keep those prayers coming in. I honestly NEED THEM more than ever.
And, PLEASE CONTINUE TO VOTE. We dropped to 3rd place... THANK YOU EVERYONE.
Love,
Cyn mommy
~*~*~*~*~*~*~*~*~*~
More on how to vote...
Click on this link:
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
Click on "Vote for this idea" button.
I couldn't manage to printscreen this part but a pop up window would appear prompting you to log into facebook or to use email @. If you've got Facebook a/c, logging into FB is mush easier and faster.
Within a few seconds, you will be directed back to the original page, then click on "Vote for this idea" button again.
Make sure your "Votes left today" changes to 9 to ensure that your vote has been submitted.
Today's the closing date. This idea is up to its 2nd spot again (YAY!) and we've to make sure it remains there in order to receive funding as only the top 2 ideas would be considered. I'm not too sure if it's according to GMT or what but let's all just vote.
Thank u!
Love,
Jolene
This is Charmaine’s Cycle #14 chemotherapy and it doesnt look like we are nearing that ‘End Point’ I’ve always been praying for and looking forward to... However, she is here, watching her ‘High Five’ DVD and singing along to the tunes. And this IS the moment that I should treasure and consider myself blessed.
The past week has definitely taken such a toil on me, both physically and emotionally. In fact, it felt like the month of September was just full of turns and twists; tears and pain, and quite frankly, nothing memorable.
Even as we speak right now, the diagnosis is still somewhat inconclusive and our treatment plans are also somewhat in limbo.
Each doctor within the NB team seem to have extremely different opinions and it's honestly very hard to know who is correct. By extremely different, I do mean it literally.
One day, a doctor walked up to me and tell me its “MUCH IMPROVED”, as compared to the clean results we had in Singapore. I just crumbled. Yes, it could have been worse but it still hurts to know that its not clean.
Next day, another doctor walked up to me and told me its bad, because it looked like progressive disease to them.
For the non-cancer savy, PROGRESSIVE is NEVER used in a good way in CANCER WORLD.
And then I would cry a sea of tears, breaking apart completely and just wishing that I will just stop breathing literally. I am not sure if I was even functioning but I just couldnt pick myself up... However, as much as I wish to freeze time and turn everything to a complete stand-still, life continues... And I continue to function after the tears dried up.
And before you know it, another doctor will give you another picture...
Yesterday, after all the loud crying, insane screaming and quiet sobbing for days and days, we met up with her Radiation Oncologist, Dr Suzanne Wolden.
For the first time in days, I am suddenly seeing a very very very faint light coming through our tunnel of complete darkness. It isn't the light that I was wishing for, nonetheless, her compassionate self and her concern over the diagnosis gave me a sense of warmth I so needed.
Of course, nothing went according to plan yesterday. WHY am I NOT SURPRISED?
Yesterday, the plan was for us to go in and meet with Dr Wolden, to discuss all the dreadful side effects of the higher dose of radiation that I had decided to do to both Charmaine’s femurs and possibly stunt her growth, partially or completely. It was really not a morning that you will wake up to, feeling bright and happy.
Dr Wolden was our Radiation Oncologist last year when we radiated her liver and I remember her as one of the nicest ladies, truly having a passion in wanting to help us treat our kids. We talked to her assistants while waiting for her and her assistants were just as good as she is. Finally, when Dr Wolden came, the first thing she said was:
“I’m honestly not convinced that Charmaine is having progressive disease. Unless I am very certain that her disease is indeed progressing, I wouldnt want to succmb her to all these radiation. And I just called Dr Kushner, he said that he doesnt know what is going on either. The team will discuss this evening again and we will let you know the decision.”
I didnt know what to think or feel. I’ve gone through TOO MANY UPS AND DOWNS (actually it felt like it was just going down, and deeper down...) the past week, I honestly dont know what is real and what is not.
What is truth at this moment and what is real factual truth.
We mainly talked abt her right femur. Hence I asked about her left femur and she said she thought the same of the left, that it was not clear cut progressive. I asked for her opinions on what she felt was an option for Charmaine. She said she would actually feel comfortable to not do much, maybe a light chemo, allow Charmaine to have a good quality of life and re-scan in 3 months, after Christmas, to track the results and have a better idea of what is going on.
I know she is not an oncologist that treats Neuroblastoma specifically but more a radiation expert, and that her opinions may not count towards the team BUT her words have most certainly provided me a MUCH NEEDED perspective. THE perspective that I never thought was possible because everything was so grim and dark when we discussed with the other NB experts last week and who am I to question their judgement.
Amidst the grey skies, it suddenly dawned upon me that the day I met Dr Wolden was Tuesday and if i hadnt begged for another option, Charmaine would have already been on Day 2 of ICE --THE CHEMO THAT WILL COMPLETELY WIPE CHARMAINE IMMUNE OUT, AND MAY CAUSE HALLUCINATION, CONFUSION, LOSS OF MEMORY. I even had one father email me that his son went into a semi-conscious state while doing ICE. It IS THE CHEMO I’ve always dreaded.
Oh God, I simply couldnt even imagine WHAT IF I had gone ahead with their suggestion of ICE and now, this doubt of HOW true that the disease is progressive is being questioned and brought up, what terrible terrible mistake would that be!
I have not heard back from anyone yet. We are doing a light chemo now which gives me a little comfort that we are not giving her cancer cells a break to grow. And hopefully, this will give the team some time to re-organise their thoughts and plans. There are many many questions and decisions going through my head each day, but without a proposal from the team, I cannot do anything except to worry and stress.
On top of cancer, I have to continually worry about her knee which is acting up this morning again. SHE NEVER GETS A BREAK. And last weekend, her temperature spiked up and she had a bout of FEVER. [It was another drama on its own, but I am too physically drained now to even start narrating it.
I had SO MANY BREAKING POINTS last week alone that I had no idea how I am even alive today. I fear about her cancer, I worry about her knee pain, I am highly stressed over her having fever.
Jase gives me a different set of worries, making sure his homework is done, making sure he is fed, making sure he goes to school on time, making sure that I can pick him up from school on time...
“I just want to go home...”
“I just want to hug someone and cry till I fall asleep.”
“I need to give my heart a break, my mind a rest, my body a good sleep... maybe than I can pick up the pieces, carry all my worries and fears and continue to plough forth...”
Sorry I cant continue more, because this just makes me want to cry so bad...
Anyway, I just want say that despite all the ups and downs, all the insanities in our lives, we are OKAY. I am sorry to have made everyone worried... Please continue to keep those prayers coming in. I honestly NEED THEM more than ever.
And, PLEASE CONTINUE TO VOTE. We dropped to 3rd place... THANK YOU EVERYONE.
Love,
Cyn mommy
~*~*~*~*~*~*~*~*~*~
More on how to vote...
Click on this link:
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
Click on "Vote for this idea" button.
I couldn't manage to printscreen this part but a pop up window would appear prompting you to log into facebook or to use email @. If you've got Facebook a/c, logging into FB is mush easier and faster.
Within a few seconds, you will be directed back to the original page, then click on "Vote for this idea" button again.
Make sure your "Votes left today" changes to 9 to ensure that your vote has been submitted.
Today's the closing date. This idea is up to its 2nd spot again (YAY!) and we've to make sure it remains there in order to receive funding as only the top 2 ideas would be considered. I'm not too sure if it's according to GMT or what but let's all just vote.
Thank u!
Love,
Jolene
Decision made, Tears Dried
Friday, September 24, 2010
I made the decision to put my baby through much higher doses of radiation for both her femurs and possibly stunt her growth permanently. It hurts so badly, just imagining what I am putting my own flesn and blood thr, but I will take whatever consequences and side effects just as long as she beats cancer and is alive. The thought of giving up has dried up like the tears, no longer there. The reality is getting tougher with each single day and the journey will be nothing that I've ever experienced, am sure that I will be beaten a couple more times. I will cry, I will think of giving up and I will be devastated more than a million times, but I will get up, dry my tears and do whatever it takes to survive.
Cyn mommy
Cyn mommy
WHY IS IT SO HARD TO LIVE?
Wednesday, September 22, 2010
Sunday - September 19th 2010
A day that I couldnt decide whether to be happy and excited or worried and paranoid. (I even got the date of the first day at school on Monday wrong!)
Monday - September 20th 2010
My Facebook Status:
A tribute to Gabriel Liam, Forever 3...
Liam was diagnosed in March 09 with stage 4 neuroblastoma, unfavourable histology. After 7 rounds of chemo with surgery after the 4th chemo, he had an autologous transplant in early November 09. His treatment had been relatively event-free except for a lung infection after the 6th chemo, just before the harvesting of the stem cells. In Feb 10, during a routine post-transplant MIBG scan, there was an avid spot on the knee/s. Liam developed a port-infection shortly after treatment for relapse. This resulted in the port being removed and Liam going through the remaining rounds of chemo without a central line. The 4-5 rounds of relapse chemo and 14 sessions of RT failed to beat the monster. The disease continued to spread to other limbs and soft tissue despite active chemo.
Things I remember about Liam, forever 3...
Liam is the only son of Joan and Carlos. He is deeply loved by them. Liam loves to play with Ben 10 and power ranger figurines. He is very imaginative and makes all kind of noises when the aliens and power rangers are fighting a difficult fight. His favourite foods are fish and squashed pumpkin. But he loves Mummy's milk best. Liam likes to play PSP too and one of his favourite games is Ben 10. Sometimes, he accidentally deletes a game saved and Daddy has to play Ben 10, clearing all the levels again so that the aliens can be unlocked.
Liam likes walks in the park and he loves to play at the playground. He dances a good jig to entertain Mummy and Daddy. When he sees tears in Mummy's eyes, he tells her not to cry and that everything will be alright. When Mummy tries to feed him morphine, he tells her he wants to pray to Papa Jesus to take away the pain.
Thanks for being part of Liam's journey in his fight against cancer.
By Lili, another NB mommy...
[Please pardon me for not writing one personally myself as today is most probably one of the worse days in my life, (YET AGAIN) hence I am frankly incapable of anything except to cry...]
Tuesday - September 21st 2010
"Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit." - Napoleon Hill
It is barely mid-week and I will never imagine how the week which started on being the most memorable first day at school for Charmaine and Jase has taken such a drastic, extreme turn barely 1-2 days later. And the biggest irony is that I had even anticipated that today (with the wrong date I typed) was going to be a 'SPECIAL' day. However it WASNT the exciting, first day at school SPECIAL DAY.
Today is awfully painful and just ridiculously wrong. I started off my day with preparation made from last week, with arrangements for friends to babysit Jase in case Charmaine has a knee infection and requires a surgery immediately, rendering us inpatient. And I was worrisome the entire time, trying to prepare myself mentally for the fight against the infection bug on her knee.
Someone really has to drill the mantra of "Expect the UNEXPECTED" into my brain hard, if its possible. My emotions are running everywhere, and I have no idea how do I even start relating...
Charmaine's knee biopsy went well, the Orthopedic Surgeon Dr Morris came out within 15mins to inform me that it didnt look like an infection to her but nevertheless, we had to wait for the biopsy results to confirm that and it should be out in an hour. So that was what I thought to be the start of a good day, with a possible good news of no infection. However, the bad news would mean that we have absolutely no answer as to why her knee keeps swelling up and hurting her so badly because with no answer, we have no treatment... And its even a high possibility that Charmaine has to live and deal with it on a daily basis, with the fluid deciding when it want to swell and play the joke on us...
I have to tell you that I actually told Dr Morris that I was truly half hoping that she would tell me its an infection because at least I know it can be cleaned up and treated... Obviously, she opened her eyes so wide and said: "YOU DO NOT WANT THAT!" Well, yup, I did ask for prayers to make sure it isnt an infection... I am just really frustrated and upset at having to see Charmaine suffer the pain and immobility of her knee all so frequent... You know, EVERYTHING that she wishes for are just simple things, NO? BUT WHY DOES EVERYTHING SEEM SO OUT OF HER REACH and SO IMPOSSIBLE. She wishes to go to school, study, play, run and fret about homework... She wishes to have her own friends... I cant even stop crying typing these words out...
~~~ Monday @ School ~~~
Honestly, I cannot never do enough justice to the happiness that she feels whenever I tell her that she can go to school the next day. I was a total wreck on Monday, after dropping both Jase and Charmaine at school. The moment I bid them goodbye and barely stepped out of the building, I was already tearing up so badly, basically cried my way back home... Her excitement, her joy, her courage, her pride and contentment made me a very proud mother of hers... I was expecting her to want to back out the moment she stepped in school, but she was beaming with joy, waving her hand so happily at me, telling me that: "I will see you later after school when you come pick me up! Love you mommy, byeee!" It felt to me that she has waited forever just to say those words to me... and she was truly overjoyed to be able to finally say those words to me herself and just be on her own... Thats her first day.
On the other hand, I could tell that Jase wasnt as excited as Charmaine was and probably even slightly scared but he did well too! When I kissed him goodbye, he didnt cry, just said goodbye to me and went with his teacher. At the end of the day, it seemed like I was the one suffering from separation anxiety instead. The moment, that one day gave me a sense of hope, a possiblity that we are just one more step closer to our goal of living a 'normal life', something that is so seemingly distance from me...
~~~ Monday @ Liam's passing ~~~
And barely minutes after dropping them off, I received the dreadful phonecall that I knew would be coming... the horrible horrible news of the passing of Gabriel Liam. We were almost parallel in terms of diagnosis and treatment and I only met them early this year when we returned to Singapore. We were inpatient together most of the times, and we were the 2 mothers battling with NB relapse... I really hate cancer. NO AMOUNT OF GOOD OR BENEFIT can outweigh the heartache, the pain, the loss, the despair cancer brings to one's life. NOTHING. Napolean Hill who said that, obviously didnt meet cancer. I couldnt stop crying again... I wish to just scream out at the top of my voice at something, someone. I really want to run away to never never land, or just pause everything, make everything come to a complete stand-still. So that I dont have to live anymore... no love, no happiness, but also no pain and no sufferings...
The joy of Jase and Charmaine's first day at school was completely overshadowed and swept away by the overwhelming grief in my heart...
Which is why I couldnt even blog...
~~~ Back to Tuesday ~~~
My Facebook status:
I cried the whole of Monday till Tuesday and now my eyes are swollen and hurting so bad...
I emailed the doctors and nurse practioner yesterday and only got a reply at 6pm which said this:
AND AS I AM TYPING THIS, I RECEVIED AN EMAIL FROM A DOCTOR.
THEY CONFIRMED SHE HAS PROGRESSED. I JUST WANT TO DIEEEEEEEEEEEEEEEEEE RIGHT NOW I COULD.
A day that I couldnt decide whether to be happy and excited or worried and paranoid. (I even got the date of the first day at school on Monday wrong!)
Monday - September 20th 2010
My Facebook Status:
Another new star in the skies tonight, another angel earned his wings... Too young and too much sufferings... Wish I could say HE is in a better place but there is simply no place better than a mother's hug.
A tribute to Gabriel Liam, Forever 3...
Liam was diagnosed in March 09 with stage 4 neuroblastoma, unfavourable histology. After 7 rounds of chemo with surgery after the 4th chemo, he had an autologous transplant in early November 09. His treatment had been relatively event-free except for a lung infection after the 6th chemo, just before the harvesting of the stem cells. In Feb 10, during a routine post-transplant MIBG scan, there was an avid spot on the knee/s. Liam developed a port-infection shortly after treatment for relapse. This resulted in the port being removed and Liam going through the remaining rounds of chemo without a central line. The 4-5 rounds of relapse chemo and 14 sessions of RT failed to beat the monster. The disease continued to spread to other limbs and soft tissue despite active chemo.
Things I remember about Liam, forever 3...
Liam is the only son of Joan and Carlos. He is deeply loved by them. Liam loves to play with Ben 10 and power ranger figurines. He is very imaginative and makes all kind of noises when the aliens and power rangers are fighting a difficult fight. His favourite foods are fish and squashed pumpkin. But he loves Mummy's milk best. Liam likes to play PSP too and one of his favourite games is Ben 10. Sometimes, he accidentally deletes a game saved and Daddy has to play Ben 10, clearing all the levels again so that the aliens can be unlocked.
Liam likes walks in the park and he loves to play at the playground. He dances a good jig to entertain Mummy and Daddy. When he sees tears in Mummy's eyes, he tells her not to cry and that everything will be alright. When Mummy tries to feed him morphine, he tells her he wants to pray to Papa Jesus to take away the pain.
Thanks for being part of Liam's journey in his fight against cancer.
By Lili, another NB mommy...
[Please pardon me for not writing one personally myself as today is most probably one of the worse days in my life, (YET AGAIN) hence I am frankly incapable of anything except to cry...]
Tuesday - September 21st 2010
"Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit." - Napoleon Hill
It is barely mid-week and I will never imagine how the week which started on being the most memorable first day at school for Charmaine and Jase has taken such a drastic, extreme turn barely 1-2 days later. And the biggest irony is that I had even anticipated that today (with the wrong date I typed) was going to be a 'SPECIAL' day. However it WASNT the exciting, first day at school SPECIAL DAY.
Today is awfully painful and just ridiculously wrong. I started off my day with preparation made from last week, with arrangements for friends to babysit Jase in case Charmaine has a knee infection and requires a surgery immediately, rendering us inpatient. And I was worrisome the entire time, trying to prepare myself mentally for the fight against the infection bug on her knee.
Someone really has to drill the mantra of "Expect the UNEXPECTED" into my brain hard, if its possible. My emotions are running everywhere, and I have no idea how do I even start relating...
Charmaine's knee biopsy went well, the Orthopedic Surgeon Dr Morris came out within 15mins to inform me that it didnt look like an infection to her but nevertheless, we had to wait for the biopsy results to confirm that and it should be out in an hour. So that was what I thought to be the start of a good day, with a possible good news of no infection. However, the bad news would mean that we have absolutely no answer as to why her knee keeps swelling up and hurting her so badly because with no answer, we have no treatment... And its even a high possibility that Charmaine has to live and deal with it on a daily basis, with the fluid deciding when it want to swell and play the joke on us...
I have to tell you that I actually told Dr Morris that I was truly half hoping that she would tell me its an infection because at least I know it can be cleaned up and treated... Obviously, she opened her eyes so wide and said: "YOU DO NOT WANT THAT!" Well, yup, I did ask for prayers to make sure it isnt an infection... I am just really frustrated and upset at having to see Charmaine suffer the pain and immobility of her knee all so frequent... You know, EVERYTHING that she wishes for are just simple things, NO? BUT WHY DOES EVERYTHING SEEM SO OUT OF HER REACH and SO IMPOSSIBLE. She wishes to go to school, study, play, run and fret about homework... She wishes to have her own friends... I cant even stop crying typing these words out...
~~~ Monday @ School ~~~
Honestly, I cannot never do enough justice to the happiness that she feels whenever I tell her that she can go to school the next day. I was a total wreck on Monday, after dropping both Jase and Charmaine at school. The moment I bid them goodbye and barely stepped out of the building, I was already tearing up so badly, basically cried my way back home... Her excitement, her joy, her courage, her pride and contentment made me a very proud mother of hers... I was expecting her to want to back out the moment she stepped in school, but she was beaming with joy, waving her hand so happily at me, telling me that: "I will see you later after school when you come pick me up! Love you mommy, byeee!" It felt to me that she has waited forever just to say those words to me... and she was truly overjoyed to be able to finally say those words to me herself and just be on her own... Thats her first day.
On the other hand, I could tell that Jase wasnt as excited as Charmaine was and probably even slightly scared but he did well too! When I kissed him goodbye, he didnt cry, just said goodbye to me and went with his teacher. At the end of the day, it seemed like I was the one suffering from separation anxiety instead. The moment, that one day gave me a sense of hope, a possiblity that we are just one more step closer to our goal of living a 'normal life', something that is so seemingly distance from me...
~~~ Monday @ Liam's passing ~~~
And barely minutes after dropping them off, I received the dreadful phonecall that I knew would be coming... the horrible horrible news of the passing of Gabriel Liam. We were almost parallel in terms of diagnosis and treatment and I only met them early this year when we returned to Singapore. We were inpatient together most of the times, and we were the 2 mothers battling with NB relapse... I really hate cancer. NO AMOUNT OF GOOD OR BENEFIT can outweigh the heartache, the pain, the loss, the despair cancer brings to one's life. NOTHING. Napolean Hill who said that, obviously didnt meet cancer. I couldnt stop crying again... I wish to just scream out at the top of my voice at something, someone. I really want to run away to never never land, or just pause everything, make everything come to a complete stand-still. So that I dont have to live anymore... no love, no happiness, but also no pain and no sufferings...
The joy of Jase and Charmaine's first day at school was completely overshadowed and swept away by the overwhelming grief in my heart...
Which is why I couldnt even blog...
~~~ Back to Tuesday ~~~
My Facebook status:
kept pushing, pounding and clawing against the dead wall. It didnt even flinched. Promised myself not to cry infront of Charmaine but I failed again today... :-( DAMN YOU CANCER! LEAVE ME and EVERYONE I LOVE ALONE!!! I HATE YOU!!! STOP TORTURING ME LIKE THIS!!!
So while waiting for her biopsy results, I requested to meet the doctor to discuss our plans...
I am still finding it very tough to re-live those thoughts by typing them out again, so please bear with me, here is an excerpt taken out from an email I typed to Dr Aung in Singapore...
And NOW, the biggest shock today is that Dr Modak is thinking that there is a possibility she has progressed. :-((((((((((((((
Well, it started with me questioning how is her LEFT FEMUR, and they started to look at the MIBG scan and than they said they thought they saw something very faint and probably questionable in her left femur, near the knee area.
Obviously, they said the MRI picked up disease on her left femur as well. I said we sent them the MRI done in July but for some odd reasons, they dont have it! :-(
Finally they dug through and found the report of the MRI done on July 22nd. Apparently, the new spot we saw is now bigger, on her left femur...................................................................
Dr Modak said he needed to go back and discuss with the radiographer again.... will let me know soon............. (their idea of 'soon' never felt soon enough though.)
Hence, amidst my mad crying, I asked will the plan change if there is indeed something on her left femur?
Dr Modak said maybe they might consider high dose chemo if there was something on her left.... :-((((((((((((((((((((((((((((
I cannot think very well now and just cant stop crying... I am still waiting for someone, anyone to call me and inform me of her knee aspirate results and hopefully, their plan!!!!!!!!!!! ARGH, its really frustrating that they seem to only read the scans when I asked and questioned it......................................... I know they are busy but I've already given them 3 weeks................................................... I honestly feel that Charmaine's case has been shelved aside... I would have zero complains if she is CLEAN, I am more than willing to let them review other cases first. BUT IF indeed Charmaine has progressed, we have been doing nothing for 3 weeks! Can you feel my desperation. :-(
Besides, MIBG result was OUT in the first week of September. Aiya DR AUNG, I am so paranoid and freaked out now. With Gabriel Liam passing, I am going even more insane here. :-(
Half my mind is thinking if indeed we have to do high dose, should I rush back to Singapore or HOW?!?!?!?!?!?!
Sorry, I know I should wait for them to get back to me but i really needed to cry out aloud to someone...
I cried the whole of Monday till Tuesday and now my eyes are swollen and hurting so bad...
I emailed the doctors and nurse practioner yesterday and only got a reply at 6pm which said this:
Please come in this week to get chemo consent—the team would like to start chemo next week
AND AS I AM TYPING THIS, I RECEVIED AN EMAIL FROM A DOCTOR.
THEY CONFIRMED SHE HAS PROGRESSED. I JUST WANT TO DIEEEEEEEEEEEEEEEEEE RIGHT NOW I COULD.
Subscribe to:
Posts (Atom)