My Amazing Little Princess

Tuesday, May 31, 2011

I have so much to say, so much to share and a lot to update but I honestly have no idea where and how should I begin.

Let's just start by "Why the lack of updates?"
Because I've been trying to get on 'www.bloodspot.com' for more than a week to no avail. Now I realize it should be 'www.blogger.com'. I feel so "DUH"!

In the past week, there were many moments when I was in such misery and feeling so much despair I just wanted to come online to ask for prayers. Obviously, I was being really dumb because I couldn't get online. There were also abundant moments that I just wanted nothing but remain concealed in my little cave, our inpatient room. I'm just incapable of any form of interaction with anyone. Because I have had enough of crying in front of my little girl, so much that I wish desperately someone would kindly cut my tear ducts. I figured that would have been the simplest rational solution to my never-ending sobbing. And I honestly have had enough of seeing my tears. I bet Charmaine must have felt the same.

Hmm, as I sit here trying to recount back the events that unfolded last week, I am struggling to even remember when we were admitted. OH, now I remember. How could I not? It's such a special day. It was the day that I had promised myself to write an entry to thank a very special and treasured someone. It was May 20th 2010. It was a Friday. It was the day my beloved son turn 7.

Yes, things just always have to happen on days when you wish that Heaven will be kinder to you. You silently pray and wish that just one day, for that just one day, you beg the universe to conspire and allow you to have a brief moment of breather. But NO it does not. The universe or heaven or fate (whatever you like to term it, it does not make much of a difference to me) enjoys pushing the soul to it's limits.

I regret to say it had totally succeeded during that round. I was beaten and dejected. No matter how hard I tried, I just couldn't even pick myself up a tiny bit to even put on a smile for my son on this special day. While I want to tell you, "no matter how rough the day was, I am grateful that Jase, Char and myself are together to make it through", the truth is far from it. Believe me, I know there are others doing much worse than me, others without their child, many others starving and even more without a roof over their heads... I know... I really know. And I am constantly reminding myself that it really isn't that bad and I am not the most devastated soul on earth... Nonetheless, it really doesn't get any easier. It doesn't at all. Just because there are people in worse situations than I am in, just because there are many others who had lost their precious little ones SIMPLY DOESN'T REDUCE MY PAIN a tiny bit. My heart hurts so bad. I feel the pain for others' loss like my own... And I feel the pain of my own child suffering. The pain of suffering is not one bit lesser than the pain of loss and vice verse...

Hence, regrettably... That had to be the worse day for Jase... For Charmaine and for myself. Even if time could reverse, I doubt anything would have happened differently... Even if at the back of my mind, I know it's highly possible that it may be one of our last birthdays together... I am beyond upset. I of course feel anger at myself too, for being totally unable to cherish the day the way I should have.

The truth is I am exhausted. I am so tired I couldn't even muster up any adrenaline to be alive and present. And I am so afraid to confess my exhaustion for fear that Heaven may interpret my exhaustion the wrong way and decides to steal my child away from me.

Anyway, we have been having pain at home for a few days and on Thursday night, it had gotten progressively worse to the extent both Char and I couldn't even get a wink of sleep. On top of pain on her right leg, she suddenly complained of pain in her left rib and abdomen. I was totally freaked out. I know of pain in her right leg and we have been living with it for more than a year now so we kind of know that infection or inflammation due to tumor growth may be a factor but I'm entirely new to infection or inflammation in the abdomen and the rib. Because of some other cases in the ward, my mind immediately took to the worse, fearing infection that may be life threatening.

On Thursday morning, I had even written Dr Aung an email, telling her that it seems like we were going towards to fever scenario. She usually starts with pain in her knee/leg and when it starts to be immobile, that's when the fever will set in. We had a scheduled CT simulation for Charmaine's Tomo Therapy at Mount Elizabeth Hospital with Dr Lee Kim Shang and somehow or rather, I managed to bring Char to Mt E to complete the simulation. Of course, I sort of prepared Dr Lee for a highly possible inpatient stay for fever.

True enough, her fever decided to spike on early Friday morning. Fever and pain are one of the worse things... Charlene had once again taken leave on Jase's Birthday and arrived early at our home. Dropped us to KKH emergency before bringing Jase out.

I texted the Palliative team and Dr Aung who was at course about Char's pain and fever. Unfortunately, Char had a cough and we required isolation. No isolation room in the oncology ward, hence we were lodged at some surgical ward single room which looks marvelous but is nothing but horrible beyond that. They just aren't trained in treating cancer kids. Thankfully, Dr Wynn from Palliative came by asap to access her pain. Throughout the 2 hours at Ward, I was self medicating with morphine and paracetemol, checking her temp myself... What were they interested in checking? SPO2! her oxygen stats! DUH!

And the Medical Doctors who came by were just, ermm... Inexperienced is the kindest word I can come up with. I had to keep repeating myself over and over, time and again to different nurses, doctors... The time I fed her the different meds when we were inpatient the whole time! I was already feeling like I am hyperventilating trying to keep Char comfortable... Feeling shitty because I just totally neglect my son's birthday... And yet, they kept putting my brain to further tests...

After a good 2 hours, she was not even accessed, no blood cultures were done and no antibiotics were started. When it was finally done 3 hours later, only one antibiotic was ordered. I wasn't comforted at all. In fact, I was highly stressed. I felt like I had to take charge because I simply don't trust the doctors who weren't experienced in managing cancer kids. And I did. I stressed that I am very anxious over her abdomen and rib pain and I kind of demanded that an Ultrasound be done. I honestly felt that it was a simple test and there was absolutely no need to observe her further since she's been having pain over mor than 48hrs which got progressively worse instead of better. If there was truly an infection, there wasn't any more time to be wasted, and the right treatment should start asap!

We did the ultrasound scan and the result came back normal which set my mind at ease a little.

Than barely a couple of hours later, Jase came by the hospital feeling lethargic and grumpy. I totally don't blame him. Yet another year at the hospital for his birthday... I had assumed he was just upset at us not being able to celebrate the day with him... But it turned out that he was ill. Hence the lethargy. And not before long, I started to present symptoms of some sort of flu myself. So yeah, Jase was suck at home, Char was in pain and feverish at the hospital and I was feeling ill too...

She continued to spike a fever daily and that was scary in a different way...

That was our weekend...

Come Monday, the palliative team still couldn't manage Char's pain. There were times I thought we were close to reaching a regiment that might actually keep her comfortable. But those moments were swiftly replaced by a different area of pain...

Finally, the Acute Pain team was called in... On Wednesday.

Char was started on IV morphine. That seems to work a little better... But that brought along different side effects... Urinal retention... Constipation... Dopey...

So, we added more medications to counter the constipation... Still in pain... Tried to tweak the IV Morphine...
On Thursday, IV Ketamine was added onboard...

Throughout everything, my little princess shouldered on. She cries when she is in a great deal of pain and shouts out loudly, "Mommy, I love you so much!" At her most painful, more vulnerable moments, not once did she curse or throw a tantrum, instead she just keeps telling me in between her cries that she loves me so...

She knows I love to see her smiles and she will make every effort to smile for me when she is awake and not lethargic... I have a couple of pictures from her post Op with her trademark smile... Need to figure out how to upload here for you all...

We were nearing a comfortable level with her pain when Friday brought on another nightmare...

I am not sure I want to start the day's events that went horribly wrong in this entry... Maybe another day... Nothing short of another movie in the making... From the loss of control of lower body to horrific pain from urinal retention in her bladder which couldn't function, to a last minute urinal catheter insertion, to a immediate ambulance ride to Mount Elizabeth hospital, to a emergent MRI on her spine, to another ambulance ride back to KKH to an immediate spinal cord surgery... To an overnight stay at Children's ICU with numerous puncture holes marks on her arms... To numerous tubes, drainage, and being hooked up to all sorts of monitors...

What is important for me to remember about Friday's nightmare is how brave and how resilient my little girl is. She woke up to being unable to move and feel her lower body and yet she has never even cried once because of that. When I asked her "what's wrong" upon seeing her shock and fear, she answered me in a way that makes sense to her "I think I feel pain in my left leg". Despite her fear, she didn't cry. I know its because she didn't want to make me upset. Despite her young age, she was matured and smart enough to try and rationalize her situation in the only way she knew - had to be pain.

It was only when she kept asking me to touch her toes, move her legs in a particular way that it dawned upon me something was not right. While I was certain something wasn't right, never did I imagine it to be paralysis. I knew there was a tumor growing dangerously towards her spine but it just didn't register to me that it was paralysis. I wasnt sure if I was just plain dumb or was I just numb.

Friday was also the first time I had actually allowed myself to answer in such a haphazard way to a doctor! To think that I actually replied "I don't know and I can't think" to Dr Lee is unacceptable to me. Throughout the journey, I had never once allow myself to be taken over by emotions and just quite literally switch off during consultations. No matter how tough it was, and whatever horrific news was thrusted onto me, I would always force myself to breathe and to think and respond as rationally as possible. This is not to say that I don't tear. I always cry like a big baby but somehow or rather, I was able to force myself to ask the necessary questions and leave the crumbling to home. Hence, Friday's nightmare was an eye opener of sorts for me. I don't know how I feel about my rather dismay response. In a way, it has shown me a side that I thought I was holding up well. Apparently not quite anymore. It's an awakening call to myself that I must not allow myself to just disengage and crumble at crucial moments. Even my adrenaline seems to be emptied out and that's just not good!

I am truly blessed to be surrounded by a team of wonderful doctors who are on the exact same frequency as I am on that fateful day. Without speaking to me, Dr Aung knew what I would choose immediately. With barely knowing me, Dr Lee, our Radiation Oncologist took charge and just knew what I needed. Similarly, Dr Seow, the neurosurgeon contacted also understood this Mother's wish upon hearing from Dr Aung. And just like that, Char was wheeled into OT immediately to remove the compression on her spine. And now, we pray harder than before and wait. Only time will tell how much damage was done and how much did we manage to salvage.

The decision of whether to go ahead with Char's spinal surgery was not an easy one to make. Both as a doctor and as a parent. This is not a procedure that will cure her. This is just an invasive procedure to remove the one tumor that was causing paralysis to her lower body and bladder. There are still about 7 other tumors growing in her body. While at Mount E, I questioned myself "Should I?". Even while I am sitting outside the OT waiting for Char, I asked myself "Why did I?".

However, post Op, when I saw my little girl break out in a BIG SMILE when she wriggles her toes or when she could move an inch of her leg, I am more certain than ever that this would have been what Char wanted if she could sign the consent herself. Doctors would tell you there is no right and wrong in almost all the situations at this phase of our journey. Nonetheless, seeing her smile now, I know I would spend the rest of my life regretting if I hadn't gone ahead with the surgery and instead allow Char to be in permanent paralysis for the rest of her journey.

While we are nowhere near being out of the woods, and still very much fighting fire, the fact that I see a big smile on Char's face whenever she manages to move her leg one tiny bit brings such great comfort to me. I couldn't imagine otherwise. If she hadn't gone through the op, I know no matter how many days I may have with her would amount to nothing but misery. And it's not my misery that I am afraid of, but rather that of my daughter's. And it would have totally made everything that we have been fighting for in the last 2 over years meaningless.

I want to thank all the doctors who made a wise decision and hence, made my decision much more easier.

Most importantly, I want to thank my amazing little girl. She is truly the one whom has made this traumatic journey seemingly straightforward. My every decision is so tough but yet because it's Charmaine, she has soften every edge out, every single time. She is barely even 6 years old but everyone, every doctor that has come into contact with her would tell you that she is wise beyond her age. Her determination, her zest for life, her fortitude, her love for her family and friends, her strength, her courage leaves no doubt for anyone that she wants to get well and she wants to live. It is without question for me of course that my little girl wants to get well. But what touches me greatly is how much others could feel the same determination and life in my little girl. Dr Aung told me this morning that in the past week, she has seen another side to Charmaine, the side that I have always known but others may not get to see it in action. I am so glad that Dr Aung got to see this amazing strength in my little girl.

Dr Aung would also be the first one to tell you that my little girl ain't that little in her mind, her thoughts and her understanding. She is sensitive, she is aware and she is understanding of her situation. We have been inpatient for almost 2 weeks now and I have had to repeat myself continually to the Pain Team, Oncology Team, Palliative Team and Surgical Team about her progress, her symptoms, my observations and concerns... It's really NOT easy to discuss in front of my little girl! Even when she is seemingly asleep. She is listening to every word I say and no matter how many big words I use, how incomplete my sentences are, she knows and she understands. She will subtlety do things to make me feel better from what she hears... That is how sweet she is. It's not about how to maker herself better. It's about how to make mommy feel better. When I commented about her lack of appetite, in no time, I will hear her telling me she is hungry and she will take a few bits of something... Many other tiny examples but both Dr Aung and me always know she understands. We try to be careful and it's still not easy, especially with many other doctors who may not be aware. I found myself telling Dr Aung that I honestly need to learn another foreign language soon!

What is extremely courageous about my little girl is also her attitude despite her high level of comprehension. Bear in mind that she understands most of the things and situations like what an average adult does. Imagine yourself in pain, losing control of your lower body, seeing your mom in tears and probably knowing that whatever it is you are fighting, it ain't simple and easy. I imagine myself in her shoes and I truly would not have the same attitude and determination as she does. Just think of Friday's nightmare. I told her about every decision, every procedure like I would to an adult. I told her we were going to insert the urinal catheter because it was needed to make her bladder feel better. She is scared of course. She tells me too. But she doesn't say no. She doesn't put up a fight. She doesn't resist. She cries out in fear but she kept her body still. I told her we were going to Mt E for a scan. She didn't even complain. She didn't even get a chance to have a breather. It was one after another. After the scan, I told her we are going back to KKH to have an operation because we need to get her legs moving again. She understand totally what an operation entails and I see no fear in her eyes. None at all. She didn't even question me WHY. Nor did she beg for me not to do the operation. Throughout it out, she was so calm. Her only complain is her hunger and her exhaustion due to the lack of rest. To some, you might say it's because she's young and doesn't understand. However, Dr Aung and I will insist otherwise. Yes she is young but no, she understands it perfectly like an adult does. I dont know about you but this adult me would have totally freaked out the moment I wake up to paralysis on my lower body and I am certain that I might have already tried to kill myself many times immediately. Even if I was somehow rescued, I would have been a nerve wreck, full of despair and deprived of any hope. The subsequent loss of bladder function would have me begging for any doctor to euthanize me there and than.

This is WHY my dear princess, you are so special. I don't know how is it that you have such amazing strengths. I don't even know how you could do it, how you could remain so calm even when I first saw the fear on your face. Only God will know how you did it. I know I will never even have half your courage my precious. But you just are. In the face of fear, anxiety and unknown, you never waver once in your attitude and determination. For some odd reason, I don't know if you were trying to protect your mommy me, or you were trying to remain strong and calm to make things somewhat more bearable for your mom... You just do.

Thank you my princess. I appear strong to many others. Truth to be told, you are the one that makes every unbearable situation seem straightforward and even easy at times! My strength is derived from yours. My determination is channeled from the zest and life in your eyes. Just one look into those eyes of yours, and the answer is there. I know others see it in your eyes too.

~~~Medical Front~~~
Char is stable now. We got out of ICU after an overnight stay. She is doing as well as one can expect from a risky spinal surgery. She continues to improve on regaining control in her legs. She started off by wriggling her toes post op at ICU and she managed to swift her legs a little yesterday. Today, she is able to bend her knees a little and hold them for a few seconds. The doctors are happy with her progress. We are however still having constipation challenges and even though she has a urinal catherer, there still seems to be urinal retention in her bladder, making her tummy look distended. That is rather worrisome.

Since yesterday afternoon, she also seem to be more tired and dopey, less periods of wakeful times, decrease in appetite. She is on 3 narcotics, and we are weaning one of the narcotics off. Hoping that it's just cumulative sedative effects from all the narcotics and nothing more than that. She tried to sit upright once yesterday and once today. Actually she hasn't been able to sit upright since the day we were admitted on Jase Birthday.

We are also having a bit of challenges with her blood pressures since post Op. They are rather high and we are monitoring her closely. Her body temp has also been persistently low since her surgery, always hovering at 35ish and low 36ish... She also started to complain of dizziness since yesterday...

Her pain is thankfully under reasonable control. She has her occasional breakthrough pain and she is able to use a PCA pump to do a bolus whenever she needs it herself.

We are planning to start her on some radiation at Mount E tomorrow. She is on a couple of antibiotics to cover her. Her surgical wound seems to be healing ok. We have finally removed all her tubies and is only using the one on her portacath and that allows her to use both her arms to move her body.

Dr Aung and I have also started her on Celebrex and Thalidomide which will hopefully slow down the tumors growth and miraculously heal her!

~~~Prayers Needed~~~
Like I said earlier, we are out of curative options for Charmaine in Singapore and traveling is out of question for now. While I am slowly trying to educate myself in areas I wish I never had to, such as pain management, the different narcotics, the side effects, the signs, the symtomps of more progression and many other painful learnings... I still continue to pray and hope that a cure is already taking place in her body... It's not easy at all. Walking between faith and fear is a daily struggle. I continue to question my sanity on a second by second basis.

Nonetheless, for some rather odd and unexplainable reason, even to myself, I find myself feeling a tint of hope seeing Char's smiles post op. I cannot even begin to tell you how beaten and how devastated I had been for the last month, each day just takes a tiny piece of my soul away from my body. I am totally heartbroken and I live in fear of what's to come... I am a living dead.

The spinal compression has caused Charmaine to be unable to move her lower body now and yet the spinal op which wasn't even a cure has given me a new leash of hope. Hope in what I don't know. I mean I can still see her one other visible tumor growing at an disgusting rate and I tried to no avail to convince our surgeon to remove it. We still have tons of challenges to overcome, in terms of her functionality of her limbs and bladder... And this is not to mention the real challenge of the danger of her disease spreading without chemotherapy... And some of the doctors are even talking of EOL - End Of Life management with me...

I am writing like it doesn't bother me at all. And I am writing without tearing now. I don't know why. I try to remind myself not to be in denial because I have Jase depending on me. But I also am kind of surviving as though there is no real loss here, as though I am just doing what I've been doing every single day of my life in the last 2 years, living with cancer and coping. I think that Charmaine being a little more comfortable and not in constant excruciating pain seem to help a little in my sanity.

Even as I am writing right now, I don't know what tomorrow will bring to me. It's been close to 2 weeks since we are inpatient. Jase is wishing that his sister is not sick so we can be home. There are tons of challenges, many things that require my thinking and decision... But I am not exactly thinking too far ahead or too much... I am simply unable to. I am trying my very best to take one step at a time, one day at a time...

I like to ask for forgiveness for my lack of faith, lack of grace and lack of sanity... I find it extremely difficult to have faith in anything. But it doesn't mean that I don't believe in miracles. I do. Like Charmaine, I believe and know that there is magic and unexplainable forces at work. I am not sure if there is a God or a Buddha. And I found myself screaming at both of them last week, demanding to know where were they when I needed them most and where were they in the last 2 years. I almost want to scream profanities at them if I actually do know how.

In reality, we all know that miracules don't happen to everyone. And I have seen many more faithful and religious families lose their child to this cruel and despicable beast of neuroblastoma. Rationally, we also know that God doesn't heal everyone. The fact is such that. Buddha apparently can't do anything to reduce the karma incurred by us and spare our lives.

I am counting on your faith, your belief and your God or Buddha to save my little girl. I hope that my confession in my lack of faith counts for something in the realm of faith and miracles. I truly admire those who have such great faith and I will admit that I am not brave enough to take that leap of faith. My brain functions on scientific reasoning and taking that leap is almost as tough as asking me to stop treatment for Char.

I pray desperately all the times, without actually following a particular belief. Maybe I am wrong. Maybe that's why my prayers aren't heard. But that's the best I can do for now... Please, if you would be so kind to help me. Say an extra prayer or say as a many as you could.

Please pray for Charmaine to recover from her spinal op with no damage at all. Let her walk and let her bladder and bowel work perfectly and normally like an average person. Please pray that her blood pressures issues disappear and please pray that her body temp stabilize. Please pray that radiation works and reduces all her tumors. Please pray that Celebrex and Thalidomide is the cure that will eliminate all the cancer cells in her body. Please pray that she will not get any side effects from all the pain relief narcotics. Please pray that the constipation issue is resolved. Please pray that she doesn't get any side effects from all her other medications... Most importantly, please pray that Char is healed miraculously and completely with all the love so that she can be a testament to magic and faith.

Thank you.

Love,
Cyn momm

9 comments:

stacey said...

When Char screams she loves you each time she is in terrible pain, it is her way to sooth your emotional pain. She feels your negative emotions. Perhaps you have already known that. Children pick up "signals" we send out through our emotions, words or no words. Both of you have come so far, been through so much. Love is all that matters. A collection of real life stories about miracles by various individual authors including mine are featured in Dr Bernie Siegel’s new book called A book of Miracles, the book will be released in September this year. http://berniesiegelmd.com/about/for-the-media/
We all define miracles differently. A miracle says Marie Lloyd, “Miracles occur naturally as expressions of love. The real miracle is the love that inspires them. In this sense everything that comes from love is a miracle.” This is as close to the truth as you can get from a few sentences.

Opinionated Pig said...

Dear Cyn,

I read your posts every other week and tonight I want you to pray together with me for Charmaine. You have to change your mind on Karma, can Charmaine possibly do anything to deserve this? And everyone who has faith to call upon Jesus' name will be healed. Continue to seek treatment but continue to know that Jesus heals all. I will the communion on Charmaine's behalf and if she gets well, all glory will be to him that heals. By the way, little Am who was charmaine's bedside neighbor is healed, family never gave up praying and believing ... Jesus heals all ESP those who have the zeal to live like Charmaine . Tonight her tumors will shrink, picture it shrinking in your mind..

brinsley said...

http://youtu.be/PbmQN3HsSEs

my apologies for being so late with this; i had been drifting in and out of a recurring fever and flu for past 2 weeks

i hope charmaine would enjoy her video
:)

ahgslj said...

dear cyn mum, i am touched by your strength and love for your children. i can't imagine how difficult a position you are in, and i can only pray for courage and hope for all of you. here's a favourite bible verse from 1 john 4:18 "There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love". take care xx

Sleepy Cat said...

Hi Cyn, don't ever lose hope...

Sleepy Cat said...

Hi Cyn, don't ever lose hope...

cady2216 said...

Please read Channel News Asia. It has an article saying there's a new chemo regimen that will help children with neuroblastoma increase chance of survival.

http://www.channelnewsasia.com/stories/health/view/1133424/1/.html

Riddin said...

Checking all the time for updates and praying all ok!

giunda said...

don't lose hope!
good luck
best of internet : Angry Birds golden eggs

 
Feisty Princess Charmaine. Design by Pocket