After more than a month of inpatient stay, we were finally discharged on Monday with a PCA pump delivering IV morphine 24/7 daily.
There was a couple of scares after we left KKH, with her complaining of more pain and her thigh looking more swollen again. I was immediately worried and paranoid, texted Dr Aung and she increased her steroids again, hoping to control the inflammation.
Today at 8am now, we are at Mount Elizabeth Hospital waiting for her radiation. And the swelling in her whole bod has gone down considerably. Except her right knee of course. The right knee where it all started more than one and a half years ago where she first relapsed. And we never could get it under control. :-(
Anyhow, Char is feeling extremely happy to just be home! She's smiling, laughing and giggling to herself all the times. It is such a wonderful sight to just watch her happiness. It's so infectious. Despite her pain, she still cannot hide her elation and joy.
I'm having a tough time here. Been hearing too many bad news and too many passings from our other families in NYC. Cancer sucks! NB is so disgusting and cowardly!!! How can I ever learn to forgive cancer when it has robbed so many of my friend's lives? And these are little kids who want to live! These are little kids in their single digit of age, wishing rather to be in great pains than die.
Gotta rush to KKH now for our next appt...
Will continue later...
Please continue to pray for Charmaine, and for so many other kids battling cancer. Pray for a cure for all. Pray for a lifetime of good health and happiness...
Love,
Cyn mommy
Up and down again...
Wednesday, June 15, 2011
Dear all,
Char's legs has gotten more swollen... Triple the original size... Low albumin level... Swollen abdomen... Been sleeping most of the days... High fever of 39 degrees daily...
She's covered with a ton of antibiotics, narcotics...
Drs think she may have some infection, cellulitis... Inflammation from tumor...
Please pray for char to over come this against all odds... And get well again...
I'm scared, worried and helpless... Fighting against my own vulnerability and weakness to hang on, to think as calmly as possible and to not fall...
Love,
Cyn mommy
Char's legs has gotten more swollen... Triple the original size... Low albumin level... Swollen abdomen... Been sleeping most of the days... High fever of 39 degrees daily...
She's covered with a ton of antibiotics, narcotics...
Drs think she may have some infection, cellulitis... Inflammation from tumor...
Please pray for char to over come this against all odds... And get well again...
I'm scared, worried and helpless... Fighting against my own vulnerability and weakness to hang on, to think as calmly as possible and to not fall...
Love,
Cyn mommy
Sharing some photos
Sunday, June 12, 2011
Cyn is unable to upload photos onto blogger so here we are sharing some photos with our lovely friends and readers with captions from cyn mommy.
In ICU post Op on Saturday (28 May 2011)
Barely 48hrs post Op on Sunday. Showing me her trade-mark smile n peace sign. Still in pain and couldn't move lower limbs BUT she still smiles for me.
Plug on one hand, needle in her port-a-cath and swallowing medications like they are her daily meals... My little girl is unfazed. Shld have seen her look of determination when the needle was poked into her hand. NOT a single sound literally! No resistance. No shakes and trembles. She kept her hand as still as a statue, held her breath, shut her eyes closed with determination, a face of sheer concentration. Even I was in awe.
I asked her, "How do you do it honey? Even mom can't." She replied, "Actually I was going to cry but than I heard you say it's OK so I just thought it's OK." Her words brought such warmth that I feel so loved. There I was inspired by her bravery and strength, and here she is crediting all that to mommy's words of "It's OK". If only, if only it's truly OK. If only I could have the same strength as hers with just hearing those 2 simplest words from the person one loves most.
Char missed having the cake from her fav shop so we ordered one and celebrated ourselves inpatient! Just my princess and me! She was so HAPPY!
My little princess with a swollen leg, pain, fever, dizziness, nausea and constipation issues... And yet, her spirit is amazing and just look at her posing for her mom despite it all!
There is also a video of lil char and jase singing but I'm not able to upload that.
Seriously, lil char is able to grit her teeth and bear with so such sickness and pain that I feel so ashamed of myself feeling so sickly every single off day for 2 weeks and counting.
Love,
Jolene
In ICU post Op on Saturday (28 May 2011)
Barely 48hrs post Op on Sunday. Showing me her trade-mark smile n peace sign. Still in pain and couldn't move lower limbs BUT she still smiles for me.
Plug on one hand, needle in her port-a-cath and swallowing medications like they are her daily meals... My little girl is unfazed. Shld have seen her look of determination when the needle was poked into her hand. NOT a single sound literally! No resistance. No shakes and trembles. She kept her hand as still as a statue, held her breath, shut her eyes closed with determination, a face of sheer concentration. Even I was in awe.
I asked her, "How do you do it honey? Even mom can't." She replied, "Actually I was going to cry but than I heard you say it's OK so I just thought it's OK." Her words brought such warmth that I feel so loved. There I was inspired by her bravery and strength, and here she is crediting all that to mommy's words of "It's OK". If only, if only it's truly OK. If only I could have the same strength as hers with just hearing those 2 simplest words from the person one loves most.
Char missed having the cake from her fav shop so we ordered one and celebrated ourselves inpatient! Just my princess and me! She was so HAPPY!
My little princess with a swollen leg, pain, fever, dizziness, nausea and constipation issues... And yet, her spirit is amazing and just look at her posing for her mom despite it all!
There is also a video of lil char and jase singing but I'm not able to upload that.
Seriously, lil char is able to grit her teeth and bear with so such sickness and pain that I feel so ashamed of myself feeling so sickly every single off day for 2 weeks and counting.
Love,
Jolene
A Record Breaking Day 22 of Our Inpatient Stay
Friday, June 10, 2011
Yes, you heard me right. We are still inpatient and it sure sounds like I'm whining about our long stay. Ghee, this has far exceeded our previous maximum number of days inpatient and that's 8 days! Indeed, one of our tiny blessings have always been Char's ability to complete a chemo without glitches or recover from her super high fever just in time for us to get out of hospital before the dreading needle change and that's usually Day 8th of inpatient. I think if you ask any oncology mommy, they probably might tell you Char being able to get out by Day 8th for our entire 2 over years journey should be considered a HUGE BLESSING instead! Well, it probably should.
Anyhow, we are at Day 22nd today and we were actually scheduled for discharge yesterday evening after our Radiation Therapy (RT). However, we were surprised with an OPENED surgical wound instead of a nicely healed one when the surgical team attempted to remove the stitches on my baby's spine yesterday evening!
This mommy here is not doing as well as our little princess. Neither is our dear prince Jase. As usual, like a champ, our princess kept it together and did not even whine, sob or get a tiny bit disappointed over last night sudden change in plans from getting home to staying in. Jase had waited patiently for us at home and when he finally saw Gong Gong (grandpa) arrive home past 9pm without his mom and sister, he called us in a teary voice. He cried: "Mom, why didnt you come back? I already packed up and cleaned up the room and we also changed the sheets! I even turned on the air-conditioning for mei mei!" That was about all I could take to hold it together. I started to tear a bit and Char immediately asked me, "What happened mom?" That question was my cue to suck it up and stay sane! I forced my tears back in and tried to flash my smile, saying my best excuse, "The doctor made me mad." The truth is I was so ready to get out and go home to be with my son... And just be home! I'm tired. Not sure from what since I've spent the last 22 days either on bed besides Char or in an ambulance besides Char. It sure doesn't sound like anything menial but it just drains the energy out of me.
Somedays it feels like I'm in this epic drama series, constantly 'acting'. On the exterior, I look normal. On many occasions, I even hear of others telling me that I look so happy that one will not be able to tell that I am walking in this journey. Nevertheless, on the inside, I am feeling despair, fear and helplessness. I am not saying I am unhappy; I feel so much happiness when I see my princess's smiles, a set of big inquisitive eyes and her voice even! However, behind every happy smile on my face, there is ALWAYS a tint of sadness, a painful reminder of how tough a journey my little girl is on, a heartbroken Mother's wish of seeing her daughter grow up healthily and normally.
'Nothing feels the same' pretty much sums up the 'ACT'! An act that may be played out easily on good days and one that requires tremendous amount of effort even for the lines to be read out on bad days... Somewhere in my mind, what I honestly feel like doing is simply to park my physical body in one hidden corner and just rot there... Like literally do nothing and rot away! Don't think, don't talk, don't eat and just don't bother!
Good days or bad days, life goes on and the 'ACT' continues... In between those acts, reality and imaginary becomes a blurry line. Ironically, the blurry line is not a bad idea after all. Because between putting an act of happiness and the heartaches in your deepest soul, maketh believe somehow becomes a reality...
So coming back to our reality now! I have to say "WE ARE GOOD!" despite everything that we are still dealing with including that darn fever which just decided to show up this morning!
~~~ WHAT'S GOOD AND MIRACULOUS ~~~
In my last update, Charmaine was still recovering from her spinal surgery and we were still uncertain of how much permanent damage had been done to her lower body and bladder... Guess WHAT! My little princess regained the sensation and mobility of her lower body in a span of about 5 days!!! Woohoo!!! Everyone was so happy for her! When we removed her urinal catheter on the 7th day, she almost immediately peed on her own and regained the control of her bladder!!! It was simply too amazing!!! I know deep in my heart that my princess would totally be able to go back to the little girl she was before the spinal compression and there was never a moment of doubt even though I didn't mention it for fear of jinx-ing us BUT YEAH! And that's WHY after her surgery, I knew I had to be thankful to all the 3 doctors who came together to make the surgery an option and a success! Each day, I would tell Char that the doctor said others will need about 20 days to recover but you will walk on your 10th day! And like a champ, she recovered and did it even under 10 days! Did I not mention before that my little princess just has this capability to simplify every situation for me? I know everyone must be praising lord or cheering happily for her upon reading this! YEAH!
From Saturday the 4th, she continue to make gradual but obvious improvements each day, eating more, talking more, laughing more and becoming more awake instead of the dopey, tired looking little girl.
She has gotten so well that by Wednesday the 8th, she started to talk about wishing to go home and sleep with Kor Kor Jase soon! Hearing her thinking about going home is a huge step forward. For the whole duration of our stay over the nearly 20 days, she had not demanded to go home at all. That was unheard of. Usually by the 6th day at most, Char would always start to whine about wanting to go home but this time, even when I probed her, she didn't even answer 'Yes I want to go home.' The reason was plain and simple. I feel her too. She was in too much pain and discomfort even she herself wasn't confident to go home. Me too, I had shared openly my fears and hesitation of going back home without getting her comfortable. I didn't want to bring her home and cause her more pain and discomfort due to my incompetency to keep her comfortable. That would be wrong.
Besides, my little princess would always indicate to me when she feels that she's ready return home with mommy! And she did!
It's a wonderful and awesome feeling! Like I said, we are NOWHERE near safety at all. If anything, our forest fire is still spreading wide and rapid! On top of our forest fire, we still have drought problems, and many other issues! However, when I look back to 2 weeks ago, our horrifying Friday and the emergent spinal surgery or even 3 weeks ago when she was in so much misery and excruciating pain, we have come a long long way! Another incredible and miraculous journey and recovery! I could barely believe it. Barely 3 weeks ago, I found myself typing on Facebook telling my friends that they should probably come visit soon if they wish...
Thank you. Thank you to everyone for all your prayers. Every hurdle that we cross, no matter big or small, brings along with it gratifying happiness and relief. I'm counting the baby steps we take while staying focused on our goal. I'm barely hanging in there but thank you to whoever is out there that has once again lifted us away from danger and given me a renewed hope and faith to continue my journey ahead. It is definitely what I needed most at my most helpless and vulnerable situation. :-) Thank you to the universe too for conspiring to make everything turn out well and beautiful. For turning my dire situation into one of hope and miracle. (I know I may turn around and start hurling abuse at you the next time I fall into despair, but please just forgive me when I do. At least, I didn't forget to say my 'Thank You' when I should!)
And last but not least, while I have a great deal of difficulty having faith in God or Buddha at this time of my life, I feel that it's only fair that I give thanks. Thank you God, Lord Jesus for seeing us through another trial. Thank you for working your magic on my little princess even when I have zero faith and thank you for the renewed hope.
Thank you Buddha for the mercy and for blessing us with yet another successful crossing of our obstacle.
Of course, I never forgot our 3 healers! They don't read our blog and hence I've already written them an email to express my gratitude and appreciation. Thank you Dr Aung lele, Dr Seow and Dr Lee Kim Shang!
~~~ A surprise report by CNA on Neuroblastoma ~~~
There were actually quite a handful of kind souls who separately emailed or texted me on the news reported by CNA on one of the latest trial reports on Neuroblastoma.
I am pleasantly surprised that CNA actually did an article on Neuroblastoma and very touched that there are so many of our supporters out there watching out on latest news for Charmaine. Thank you so much to all you wonderful souls! I do read the emails. I am aware of the trial reported by CNA and have been following closely the development of Neurobastoma treatments. Unfortunately, the trial reported by CNA is more like a bone marrow transplant (somewhat complicated to explain here) and it will only work on minimal disease. As for the other treatment options abroad, I feel that Charmaine just isn't in any position to travel right now and it wouldn't fair for me to drag her abroad in her condition either. However, believe me, I never stop questioning myself. What if I transport her in an air ambulance? What if the treatment in Michigan can actually slow down her disease by a lot... Too many what ifs.
At the end of the day, the reality staring right back at me is, I could barely even get her out of hospital and back home... What more do I want to achieve. I've been planning, changing and cancelling our trip to Sentosa so many times, the place she wants to go back and play with her brother and yet up until today, I still can't fulfil that wish of hers...
Every damn nerve and cell in my body is always working to come up with the next option, pushing my body to work hard to save my own child... To disregard Char's body and just focus on getting her cured and healed... It was so bloody painful 3 weeks ago when I had to literally forcefully knock myself on my head and create pain to the brain inside to even attempt to talk to the palliative team, to feel like I am manipulating my lips to speak of questions I never want to hear others mention... To ignore my maternal instinct to save and make my brain learn of methods of pain relief, narcotics, End Of Life symptoms... It is too bloody upsetting to even type about them now!!! And how much it hurts and tears me apart when you actually see an obvious difference in the management of your child. On the first day you step into the pediatric oncology world, one of the first things they teach you is to BE FEARFUL OF ANY FEVER! We are all given a letter with our child's name imprinted onto it stating that Neutropenic Fever is a medical emergency and it allows you to be propped to the top of the urgency list once you step into Children's Emergency. And 3 weeks ago, for the first time in our journey, I got to hear that it's OK for me to keep Charmaine at home even with a fever. I just need to learn to manage it.
My world came crushing on me. What do you mean it's OK? Of course it's not ok. A fever is a medical emergency! She needs her blood cultures drawn to check for infection. She needs to be started on IV antibiotics! Those were the sentences exploding in my head, trying to force themselves out of my mouth and into the face of the doctor talking to me. But all I could manage was a muted nod of understanding and just willing everything to stop and time to pause. Why are you treating my child differently all of a sudden? It's not fair! :-(
That was probably why I was so down and heartbroken 3 weeks ago. It was simply too much to bear... To see your child suffer so much in pain daily and to hear those words from people you rely on to treat her is so hurtful and devastating I don't even know how to describe.
Most of our doctors here are wonderful and most of our nurses here are great. I know they probably feel as heartbroken as I am to have to discuss about some of the hard and painful truths... Nevertheless, I admit that when I first heard those words, I definitely feel anger on top of despair. It's not right and it's not their fault but I am just irrational. Is that a good enough excuse for my lack of understanding?
However, despite our hard and painful reality, when I saw the doctors' faces of shock and sadness when Char was first diagnosed with the spinal cord compression and the subsequent faces of elation and relief when they saw Char recover fully from her surgery and is able to smile and joke with them... I know deep down inside the doctors' hearts, probably everyone is always wishing secretly against their science and medical training that the kids they treat will all defy their knowledge and triumph as a miracle. Don't we all wish for the same?
~~~ Challenges Abundant ~~~
Did I do a good job of reducing the gloom and grim thus far? I am not sure but I sure as hell is trying! My mood today ain't exactly one of gratitude and happiness because I miss my son and I think he is starting to feel the effects of not having his mom and sister with him for 3 weeks now!!! He still visits us every night but he's starting to feel the toil of the journey back and forth... Who wouldn't? I feel for my dad who has to cook and bring meals to Char daily, commuting to and fro daily, without complaining. And also throwing Jase to my mom totally.
As the days passed from Saturday to Wednesday, Char got better mentally and physically. However, she has not walked in 3 weeks now. Only sits up on the potty when she needs to pee. Couple that total lack of movement with heavy narcotics, guess what do we get? Severe constipation and stomaches! So severe we were up whole night sitting on the potty every hour in severe cramps and trying to poo with no success. Laxatives, suppositories... We are using what we can... Yet we are still getting not much result. The plan is to use Oral Fleet tomorrow - the nasty stuff they make you drink before a colonscopy. I heard its very nasty and potent...
To spice things up, add into the recipe a constant dizziness from the second day post surgery which has never gotten better despite all the various medications we are throwing into her body. We have even gotten Char a Sea Band!
Needless to say, the challenges don't stop at 2. The constipation, the dizziness and the constant nausea with vomiting just about stretch my little girl's body and tolerance to the max. Yes, we were definitely making progress in some areas but we were also heading downhill in other areas. Did I even mention the nasty side effects those narcotics can do to your mind and mood? While she was on IV morphine, Ketamine and midaz, she became really depressed, quiet and showing barely any response or interest to anyone, not even me. She also lost her appetite and was just laying on bed with a distanced look. Everyday, we wake up trying to figure what caused her moodiness and just lack of response, tweaked the narcotics and observe. It's a daily challenge. Finally, when we weened off her 2 narcotics and kept to just IV morphine, she slowly returned to her old self. Doctor was even considering anti-depressant at some point but I refused. We were already pouring so much medications into her body that it was scary to even count them. One medication causes some side effects and than we add another to counter the side effects of the first and it just continues like a vicious cycle that seem never-ending!
Thankfully, her mood got much better and that definitely helped to calm my nerves. We are still struggling with constipation, dizziness and nausea. But her pain actually got better at the beginning of the week! It got so well that I bravely asked if we could convert everything back to oral! Including the narcotics! I really hope that we could because I know that would make Char the happiest and being a self conscious little girl, it would definitely enable her to go Sentosa stress free! The doctors agreed and we started slowly converting everything back to oral... Wow... The amount of medications I had to feed her was equivalent to a meal! Her nausea definitely made matters more challenging. But as always, my little princess did not complain even one bit! She will comment on the nasty tasting ones but she still swallows them dutifully without question. We had to space the medications out until 3am and she will just force open her eyes and swallow them.
And everything was going accordingly to our wish and hope. Well, it seems. We were due to be discharged last night. Murphy's Law or whatever. Lady luck decided to forsake us for a bit. In my heart, I was already on the careful watch... Char's knee seem to swell up a little on Wednesday and her temp which had been in the low 36ish since her surgery climbed to low 37ish. She also started to complain of more pain in her right knee starting Wednesday. By Thursday, her knee looked even more swollen, and her temp climbed further to high 37s inching dangerously closer to the magic 38 degrees of fever! If you recall earlier I had mentioned that our game plan is now different, and even if she has a fever, we could potentially still go home and manage the fever myself because the key consideration is not as much of a coverage for possible infections but more of allowing the child to spend quality time at home...
So WHY than are we still inpatient?
Did I mention about her surgery wound not healing and there was some liquid oozing out when they removed the stitches last night? Oh, did I also share with you that there is actually a gap when some of the stitches were removed? The wound is opened. Not a big gap but to a paranoid mom, that was enough to send my sanity out of my head. They only removed about 1.5 cm to 2 cm of the wound and there I was staring at the cut opened skin that didn't look normal to me. So I asked for the second time (first being when I saw the liquid ooze out), "Is that even normal?"
*Big Sigh* I don't think I should narrate that drama today. I could write another 5000 words thesis on that. Let's just say that the doctor who handled the situation wasn't experienced enough. I reminded myself not to be personal, and to be objective on the issue. To be fair, I would even go as far to say that I think I reacted as well as one can be, given the situation of staring at your child's opened surgical wound. It isn't that horrible, and the wound looks much better and drier today. But there I was trying to comfort my little girl who was screaming and crying out in so much pain, and trying to keep my cool, analyze the situation and deciding on what to do, what I got in return from the doctor was a very poor reaction and even poorer subsequent response. I had seen others remove stitches on my little girl before and I had seen her crying out in fear and pain. Naturally, my face would contort into an expression of pain and misery. I always do. Who doesn't?
However, the gentleman last night decided to say things out of context for some reason and he basically said the wrong things at the wrong time to the wrong person. Okay, I am finding it rather funny now recounting the incident but it definitely got my blood boiling last night! Dear doctors, if anyone of you is reading this, when faced with a situation of liquid oozing from wound with a gaping opening in the wound, please do not stretch the parent's patience by introducing the topic of "Actually it's my doctor's right to not allow you in the room while I do the procedure." OMG. I was flabbergasted, shocked and angered. It just came out of nowhere. He probably felt extremely stressed by my proactive questioning of the situation and decided to change topic. Alas, what a silly topic to choose! His change of topic basically set me off on my ranting trail! :-) Seriously, I wasn't in the room shouting abuse and screaming madly at him. Neither did I demand for him to stop whatever he was doing and get someone else in... ( I had done that to others before ) In my opinion, I did nothing to warrant such a response from him. If anything, I was there to comfort Char and made sure that she remain as cooperative and as calm as possible for him. Besides, it was honestly the worst thing to say to a worried mom, already upset with the turn of events and a ruined plan of returning home. Hence, I decided to show him my 'debating skills' and threw some of my old business law lectures back at him. We concluded the session with me feeling a sense of justice done! [I sincerely apologize for this unimportant bit of ramble. Irrelevant to some extent but yet somewhat atypical of a day's life in the hospital. I figured that since this blog is a journal of our journey, might as well share some of the frustrations with you as well.] Most of the days I write about the emotional roller coaster ride we are on, updating on Char's battle, usually preferring to leave out the frustrations and challenges we faced on a daily basis within the system. There are surprisingly a lot we have to deal with. I guess it's pretty much what all of us have to deal with daily, within the office, within the home or even within the country. Nothing's perfect and we aren't the only ones facing frustrations each day. Maybe the difference lies in the fact that the frustrations in the hospital system affect our child directly and most of the times, literally physically causing more pain. We parents aren't medically trained professionals and may not think on the same line as a medical professional. But as a mother (or a father), especially in our case where we have seen things and procedures done in different ways which cause less pain, the basic instinct is to protect and fight for our child. I'm so sorry! I seriously went out of point here!
Anyway, why we are still inpatient is because my little princess spiked a fever this morning - 39.5 degrees! And because of her wound issue, we cannot simply treat this fever as a fever caused by tumor. Rather, we have to be prudent and cover her in case it's a sign of wound infection. So we have to pray that the fever goes off and her leg pain gets better. In fact, her swollen leg has gotten so painful last night we were asking for oral morphine every hourly and yet it didn't help. This means that we had to switch back to IV morphine this morning and it looks even more certain that we will be going home with a IV pump hooked up onto her body 24/7 delivering morphine into her body to control her pain.
It's considered a slight setback from our initial plan to return home without any pumps. However, looking at the macro picture of what Charmaine has gone through and overcome in the last 3 weeks, we are definitely at a moment where we should rejoice. She has come a long way and despite all the pain, the bloated tummy, the tummy cramps from constipation, the constant nausea affecting her appetite and her nagging dizziness, she continues to take each day in her own stride. Most of all, she is not showing any sign of defeat. She bravely fights the monster, do what she has to do, endure all the poking and daily probing by doctors... With an attitude that not only motivates me to continue and keep the faith but also one that gives me tremendous amount of pride to be called 'Charmaine's mommy'.
Hoping that everyone is able to keep your faith amidst your own challenges and feel the love despite the pain. Most importantly, may each and everyone of you be blessed with good health.
Love,
Cyn mommy
PS: Please continue to pray for the miraculously healing of my little princess Char. Please also pray that the challenges we are facing now can resolve with time, the right medicine and let Charmaine be cured totally! No constipation, no tummy cramps, no nausea, no vomiting, no dizziness and no more pain!!! Let Charmaine stand up and walk again!
Thank you all!
Anyhow, we are at Day 22nd today and we were actually scheduled for discharge yesterday evening after our Radiation Therapy (RT). However, we were surprised with an OPENED surgical wound instead of a nicely healed one when the surgical team attempted to remove the stitches on my baby's spine yesterday evening!
This mommy here is not doing as well as our little princess. Neither is our dear prince Jase. As usual, like a champ, our princess kept it together and did not even whine, sob or get a tiny bit disappointed over last night sudden change in plans from getting home to staying in. Jase had waited patiently for us at home and when he finally saw Gong Gong (grandpa) arrive home past 9pm without his mom and sister, he called us in a teary voice. He cried: "Mom, why didnt you come back? I already packed up and cleaned up the room and we also changed the sheets! I even turned on the air-conditioning for mei mei!" That was about all I could take to hold it together. I started to tear a bit and Char immediately asked me, "What happened mom?" That question was my cue to suck it up and stay sane! I forced my tears back in and tried to flash my smile, saying my best excuse, "The doctor made me mad." The truth is I was so ready to get out and go home to be with my son... And just be home! I'm tired. Not sure from what since I've spent the last 22 days either on bed besides Char or in an ambulance besides Char. It sure doesn't sound like anything menial but it just drains the energy out of me.
Somedays it feels like I'm in this epic drama series, constantly 'acting'. On the exterior, I look normal. On many occasions, I even hear of others telling me that I look so happy that one will not be able to tell that I am walking in this journey. Nevertheless, on the inside, I am feeling despair, fear and helplessness. I am not saying I am unhappy; I feel so much happiness when I see my princess's smiles, a set of big inquisitive eyes and her voice even! However, behind every happy smile on my face, there is ALWAYS a tint of sadness, a painful reminder of how tough a journey my little girl is on, a heartbroken Mother's wish of seeing her daughter grow up healthily and normally.
'Nothing feels the same' pretty much sums up the 'ACT'! An act that may be played out easily on good days and one that requires tremendous amount of effort even for the lines to be read out on bad days... Somewhere in my mind, what I honestly feel like doing is simply to park my physical body in one hidden corner and just rot there... Like literally do nothing and rot away! Don't think, don't talk, don't eat and just don't bother!
Good days or bad days, life goes on and the 'ACT' continues... In between those acts, reality and imaginary becomes a blurry line. Ironically, the blurry line is not a bad idea after all. Because between putting an act of happiness and the heartaches in your deepest soul, maketh believe somehow becomes a reality...
So coming back to our reality now! I have to say "WE ARE GOOD!" despite everything that we are still dealing with including that darn fever which just decided to show up this morning!
~~~ WHAT'S GOOD AND MIRACULOUS ~~~
In my last update, Charmaine was still recovering from her spinal surgery and we were still uncertain of how much permanent damage had been done to her lower body and bladder... Guess WHAT! My little princess regained the sensation and mobility of her lower body in a span of about 5 days!!! Woohoo!!! Everyone was so happy for her! When we removed her urinal catheter on the 7th day, she almost immediately peed on her own and regained the control of her bladder!!! It was simply too amazing!!! I know deep in my heart that my princess would totally be able to go back to the little girl she was before the spinal compression and there was never a moment of doubt even though I didn't mention it for fear of jinx-ing us BUT YEAH! And that's WHY after her surgery, I knew I had to be thankful to all the 3 doctors who came together to make the surgery an option and a success! Each day, I would tell Char that the doctor said others will need about 20 days to recover but you will walk on your 10th day! And like a champ, she recovered and did it even under 10 days! Did I not mention before that my little princess just has this capability to simplify every situation for me? I know everyone must be praising lord or cheering happily for her upon reading this! YEAH!
From Saturday the 4th, she continue to make gradual but obvious improvements each day, eating more, talking more, laughing more and becoming more awake instead of the dopey, tired looking little girl.
She has gotten so well that by Wednesday the 8th, she started to talk about wishing to go home and sleep with Kor Kor Jase soon! Hearing her thinking about going home is a huge step forward. For the whole duration of our stay over the nearly 20 days, she had not demanded to go home at all. That was unheard of. Usually by the 6th day at most, Char would always start to whine about wanting to go home but this time, even when I probed her, she didn't even answer 'Yes I want to go home.' The reason was plain and simple. I feel her too. She was in too much pain and discomfort even she herself wasn't confident to go home. Me too, I had shared openly my fears and hesitation of going back home without getting her comfortable. I didn't want to bring her home and cause her more pain and discomfort due to my incompetency to keep her comfortable. That would be wrong.
Besides, my little princess would always indicate to me when she feels that she's ready return home with mommy! And she did!
It's a wonderful and awesome feeling! Like I said, we are NOWHERE near safety at all. If anything, our forest fire is still spreading wide and rapid! On top of our forest fire, we still have drought problems, and many other issues! However, when I look back to 2 weeks ago, our horrifying Friday and the emergent spinal surgery or even 3 weeks ago when she was in so much misery and excruciating pain, we have come a long long way! Another incredible and miraculous journey and recovery! I could barely believe it. Barely 3 weeks ago, I found myself typing on Facebook telling my friends that they should probably come visit soon if they wish...
Thank you. Thank you to everyone for all your prayers. Every hurdle that we cross, no matter big or small, brings along with it gratifying happiness and relief. I'm counting the baby steps we take while staying focused on our goal. I'm barely hanging in there but thank you to whoever is out there that has once again lifted us away from danger and given me a renewed hope and faith to continue my journey ahead. It is definitely what I needed most at my most helpless and vulnerable situation. :-) Thank you to the universe too for conspiring to make everything turn out well and beautiful. For turning my dire situation into one of hope and miracle. (I know I may turn around and start hurling abuse at you the next time I fall into despair, but please just forgive me when I do. At least, I didn't forget to say my 'Thank You' when I should!)
And last but not least, while I have a great deal of difficulty having faith in God or Buddha at this time of my life, I feel that it's only fair that I give thanks. Thank you God, Lord Jesus for seeing us through another trial. Thank you for working your magic on my little princess even when I have zero faith and thank you for the renewed hope.
Thank you Buddha for the mercy and for blessing us with yet another successful crossing of our obstacle.
Of course, I never forgot our 3 healers! They don't read our blog and hence I've already written them an email to express my gratitude and appreciation. Thank you Dr Aung lele, Dr Seow and Dr Lee Kim Shang!
~~~ A surprise report by CNA on Neuroblastoma ~~~
There were actually quite a handful of kind souls who separately emailed or texted me on the news reported by CNA on one of the latest trial reports on Neuroblastoma.
I am pleasantly surprised that CNA actually did an article on Neuroblastoma and very touched that there are so many of our supporters out there watching out on latest news for Charmaine. Thank you so much to all you wonderful souls! I do read the emails. I am aware of the trial reported by CNA and have been following closely the development of Neurobastoma treatments. Unfortunately, the trial reported by CNA is more like a bone marrow transplant (somewhat complicated to explain here) and it will only work on minimal disease. As for the other treatment options abroad, I feel that Charmaine just isn't in any position to travel right now and it wouldn't fair for me to drag her abroad in her condition either. However, believe me, I never stop questioning myself. What if I transport her in an air ambulance? What if the treatment in Michigan can actually slow down her disease by a lot... Too many what ifs.
At the end of the day, the reality staring right back at me is, I could barely even get her out of hospital and back home... What more do I want to achieve. I've been planning, changing and cancelling our trip to Sentosa so many times, the place she wants to go back and play with her brother and yet up until today, I still can't fulfil that wish of hers...
Every damn nerve and cell in my body is always working to come up with the next option, pushing my body to work hard to save my own child... To disregard Char's body and just focus on getting her cured and healed... It was so bloody painful 3 weeks ago when I had to literally forcefully knock myself on my head and create pain to the brain inside to even attempt to talk to the palliative team, to feel like I am manipulating my lips to speak of questions I never want to hear others mention... To ignore my maternal instinct to save and make my brain learn of methods of pain relief, narcotics, End Of Life symptoms... It is too bloody upsetting to even type about them now!!! And how much it hurts and tears me apart when you actually see an obvious difference in the management of your child. On the first day you step into the pediatric oncology world, one of the first things they teach you is to BE FEARFUL OF ANY FEVER! We are all given a letter with our child's name imprinted onto it stating that Neutropenic Fever is a medical emergency and it allows you to be propped to the top of the urgency list once you step into Children's Emergency. And 3 weeks ago, for the first time in our journey, I got to hear that it's OK for me to keep Charmaine at home even with a fever. I just need to learn to manage it.
My world came crushing on me. What do you mean it's OK? Of course it's not ok. A fever is a medical emergency! She needs her blood cultures drawn to check for infection. She needs to be started on IV antibiotics! Those were the sentences exploding in my head, trying to force themselves out of my mouth and into the face of the doctor talking to me. But all I could manage was a muted nod of understanding and just willing everything to stop and time to pause. Why are you treating my child differently all of a sudden? It's not fair! :-(
That was probably why I was so down and heartbroken 3 weeks ago. It was simply too much to bear... To see your child suffer so much in pain daily and to hear those words from people you rely on to treat her is so hurtful and devastating I don't even know how to describe.
Most of our doctors here are wonderful and most of our nurses here are great. I know they probably feel as heartbroken as I am to have to discuss about some of the hard and painful truths... Nevertheless, I admit that when I first heard those words, I definitely feel anger on top of despair. It's not right and it's not their fault but I am just irrational. Is that a good enough excuse for my lack of understanding?
However, despite our hard and painful reality, when I saw the doctors' faces of shock and sadness when Char was first diagnosed with the spinal cord compression and the subsequent faces of elation and relief when they saw Char recover fully from her surgery and is able to smile and joke with them... I know deep down inside the doctors' hearts, probably everyone is always wishing secretly against their science and medical training that the kids they treat will all defy their knowledge and triumph as a miracle. Don't we all wish for the same?
~~~ Challenges Abundant ~~~
Did I do a good job of reducing the gloom and grim thus far? I am not sure but I sure as hell is trying! My mood today ain't exactly one of gratitude and happiness because I miss my son and I think he is starting to feel the effects of not having his mom and sister with him for 3 weeks now!!! He still visits us every night but he's starting to feel the toil of the journey back and forth... Who wouldn't? I feel for my dad who has to cook and bring meals to Char daily, commuting to and fro daily, without complaining. And also throwing Jase to my mom totally.
As the days passed from Saturday to Wednesday, Char got better mentally and physically. However, she has not walked in 3 weeks now. Only sits up on the potty when she needs to pee. Couple that total lack of movement with heavy narcotics, guess what do we get? Severe constipation and stomaches! So severe we were up whole night sitting on the potty every hour in severe cramps and trying to poo with no success. Laxatives, suppositories... We are using what we can... Yet we are still getting not much result. The plan is to use Oral Fleet tomorrow - the nasty stuff they make you drink before a colonscopy. I heard its very nasty and potent...
To spice things up, add into the recipe a constant dizziness from the second day post surgery which has never gotten better despite all the various medications we are throwing into her body. We have even gotten Char a Sea Band!
Needless to say, the challenges don't stop at 2. The constipation, the dizziness and the constant nausea with vomiting just about stretch my little girl's body and tolerance to the max. Yes, we were definitely making progress in some areas but we were also heading downhill in other areas. Did I even mention the nasty side effects those narcotics can do to your mind and mood? While she was on IV morphine, Ketamine and midaz, she became really depressed, quiet and showing barely any response or interest to anyone, not even me. She also lost her appetite and was just laying on bed with a distanced look. Everyday, we wake up trying to figure what caused her moodiness and just lack of response, tweaked the narcotics and observe. It's a daily challenge. Finally, when we weened off her 2 narcotics and kept to just IV morphine, she slowly returned to her old self. Doctor was even considering anti-depressant at some point but I refused. We were already pouring so much medications into her body that it was scary to even count them. One medication causes some side effects and than we add another to counter the side effects of the first and it just continues like a vicious cycle that seem never-ending!
Thankfully, her mood got much better and that definitely helped to calm my nerves. We are still struggling with constipation, dizziness and nausea. But her pain actually got better at the beginning of the week! It got so well that I bravely asked if we could convert everything back to oral! Including the narcotics! I really hope that we could because I know that would make Char the happiest and being a self conscious little girl, it would definitely enable her to go Sentosa stress free! The doctors agreed and we started slowly converting everything back to oral... Wow... The amount of medications I had to feed her was equivalent to a meal! Her nausea definitely made matters more challenging. But as always, my little princess did not complain even one bit! She will comment on the nasty tasting ones but she still swallows them dutifully without question. We had to space the medications out until 3am and she will just force open her eyes and swallow them.
And everything was going accordingly to our wish and hope. Well, it seems. We were due to be discharged last night. Murphy's Law or whatever. Lady luck decided to forsake us for a bit. In my heart, I was already on the careful watch... Char's knee seem to swell up a little on Wednesday and her temp which had been in the low 36ish since her surgery climbed to low 37ish. She also started to complain of more pain in her right knee starting Wednesday. By Thursday, her knee looked even more swollen, and her temp climbed further to high 37s inching dangerously closer to the magic 38 degrees of fever! If you recall earlier I had mentioned that our game plan is now different, and even if she has a fever, we could potentially still go home and manage the fever myself because the key consideration is not as much of a coverage for possible infections but more of allowing the child to spend quality time at home...
So WHY than are we still inpatient?
Did I mention about her surgery wound not healing and there was some liquid oozing out when they removed the stitches last night? Oh, did I also share with you that there is actually a gap when some of the stitches were removed? The wound is opened. Not a big gap but to a paranoid mom, that was enough to send my sanity out of my head. They only removed about 1.5 cm to 2 cm of the wound and there I was staring at the cut opened skin that didn't look normal to me. So I asked for the second time (first being when I saw the liquid ooze out), "Is that even normal?"
*Big Sigh* I don't think I should narrate that drama today. I could write another 5000 words thesis on that. Let's just say that the doctor who handled the situation wasn't experienced enough. I reminded myself not to be personal, and to be objective on the issue. To be fair, I would even go as far to say that I think I reacted as well as one can be, given the situation of staring at your child's opened surgical wound. It isn't that horrible, and the wound looks much better and drier today. But there I was trying to comfort my little girl who was screaming and crying out in so much pain, and trying to keep my cool, analyze the situation and deciding on what to do, what I got in return from the doctor was a very poor reaction and even poorer subsequent response. I had seen others remove stitches on my little girl before and I had seen her crying out in fear and pain. Naturally, my face would contort into an expression of pain and misery. I always do. Who doesn't?
However, the gentleman last night decided to say things out of context for some reason and he basically said the wrong things at the wrong time to the wrong person. Okay, I am finding it rather funny now recounting the incident but it definitely got my blood boiling last night! Dear doctors, if anyone of you is reading this, when faced with a situation of liquid oozing from wound with a gaping opening in the wound, please do not stretch the parent's patience by introducing the topic of "Actually it's my doctor's right to not allow you in the room while I do the procedure." OMG. I was flabbergasted, shocked and angered. It just came out of nowhere. He probably felt extremely stressed by my proactive questioning of the situation and decided to change topic. Alas, what a silly topic to choose! His change of topic basically set me off on my ranting trail! :-) Seriously, I wasn't in the room shouting abuse and screaming madly at him. Neither did I demand for him to stop whatever he was doing and get someone else in... ( I had done that to others before ) In my opinion, I did nothing to warrant such a response from him. If anything, I was there to comfort Char and made sure that she remain as cooperative and as calm as possible for him. Besides, it was honestly the worst thing to say to a worried mom, already upset with the turn of events and a ruined plan of returning home. Hence, I decided to show him my 'debating skills' and threw some of my old business law lectures back at him. We concluded the session with me feeling a sense of justice done! [I sincerely apologize for this unimportant bit of ramble. Irrelevant to some extent but yet somewhat atypical of a day's life in the hospital. I figured that since this blog is a journal of our journey, might as well share some of the frustrations with you as well.] Most of the days I write about the emotional roller coaster ride we are on, updating on Char's battle, usually preferring to leave out the frustrations and challenges we faced on a daily basis within the system. There are surprisingly a lot we have to deal with. I guess it's pretty much what all of us have to deal with daily, within the office, within the home or even within the country. Nothing's perfect and we aren't the only ones facing frustrations each day. Maybe the difference lies in the fact that the frustrations in the hospital system affect our child directly and most of the times, literally physically causing more pain. We parents aren't medically trained professionals and may not think on the same line as a medical professional. But as a mother (or a father), especially in our case where we have seen things and procedures done in different ways which cause less pain, the basic instinct is to protect and fight for our child. I'm so sorry! I seriously went out of point here!
Anyway, why we are still inpatient is because my little princess spiked a fever this morning - 39.5 degrees! And because of her wound issue, we cannot simply treat this fever as a fever caused by tumor. Rather, we have to be prudent and cover her in case it's a sign of wound infection. So we have to pray that the fever goes off and her leg pain gets better. In fact, her swollen leg has gotten so painful last night we were asking for oral morphine every hourly and yet it didn't help. This means that we had to switch back to IV morphine this morning and it looks even more certain that we will be going home with a IV pump hooked up onto her body 24/7 delivering morphine into her body to control her pain.
It's considered a slight setback from our initial plan to return home without any pumps. However, looking at the macro picture of what Charmaine has gone through and overcome in the last 3 weeks, we are definitely at a moment where we should rejoice. She has come a long way and despite all the pain, the bloated tummy, the tummy cramps from constipation, the constant nausea affecting her appetite and her nagging dizziness, she continues to take each day in her own stride. Most of all, she is not showing any sign of defeat. She bravely fights the monster, do what she has to do, endure all the poking and daily probing by doctors... With an attitude that not only motivates me to continue and keep the faith but also one that gives me tremendous amount of pride to be called 'Charmaine's mommy'.
Hoping that everyone is able to keep your faith amidst your own challenges and feel the love despite the pain. Most importantly, may each and everyone of you be blessed with good health.
Love,
Cyn mommy
PS: Please continue to pray for the miraculously healing of my little princess Char. Please also pray that the challenges we are facing now can resolve with time, the right medicine and let Charmaine be cured totally! No constipation, no tummy cramps, no nausea, no vomiting, no dizziness and no more pain!!! Let Charmaine stand up and walk again!
Thank you all!
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