I have 2 wonderful kids

Monday, December 13, 2010

I am a very blessed mother with 2 wonderful, sweet and adorable kids.

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...

Cyn mommy


Eve said...

Hi cyn, I can totally understand the feeling of having to make decision for someone else life. It is never an easy decision despite all the good intention. Afterall it concern a life whom we love and care so much. Having go thru it myself, I was wishing there and then why can't there be a book to tell us what to do next. ....

But just bear in mind , really that whatever decision you made, you made it with the best intention you have. I have no medical advice for you but just hope to encourage you. You have been doing really great. Hang in there!

And I must say jase and Charmaine are really great kids! They set a good examples for many kids here. 

Elena said...

thank you for sharing your heart with us... i'll be praying for you and the rest of the team.

stacey said...

Miracle requires work, just like flowers bloom only in sunlight. I have known mothers who gave up chemo and their children recover “miraculously” using alternative approach. I am no way in the position to advise you to do that. After hearing their story, all I can tell you is, the journey is very spiritual; but I believe miracle can be explained by science in the future. It is about the work of love, prayers and unshakable faith, regardless of their religions. It is about mothers who never gave up hope despite doctors gave them very grim hope. It is about their inner knowing that comes from something greater. All I can tell you is, there is no greater answer out there than the one you find within. Read “Drip Meditation” by Dr. Mitchell May. The book will give you a better understanding of what miracle is. Knowledge can be very empowering. The healing force is in each of us. The human body has an incredible capacity to heal. Blessings.

stacey said...

Perhaps this article written by Dr. Bernie Siegel will shed some light for you. He has been a wonderful teacher to me and I hope his words will bring some clarity to you and guide you in some way.

Mama Joan said...

Just want to drop a note to tell you that your family are constantly in my mind and prayers. Hope all things are going well for you.. Be strong and stay faithful to God's promise. Faithful is believing something that you cannot see or touch even thru tough times. Jia You!

Yes, christmas should be filled with laughter, joy and love.
This christmas will fulfill all these elements becos you are here in Singapore with your loved ones..

Happy holidays... have a blessed christmas and new year.

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