Looking on the bright and beautiful side

Thursday, July 29, 2010

Today turned out to be nothing we expected.

Charmaine just came out from an urgent MRI scheduled in last minute this morning. She has a cast on her whole right leg... a new plug set on her left hand... and not to mention the gripple needle on her portacath.

The Head Ortho Surgeon came in this morning and said that the X Ray is seeing something suggestive of a fracture. They looked at last Thursday MRI scan and saw the same thing. (But nothing is mentioned in the report) He went back to her first MRI scan in Feb this year and no such fracture was seen. He, however said that it is normal and most people are expected to have some bone changes after a bone infection (which Charmaine had in Feb). The good news is that we know she is neither having any infection nor is it anything NB. So, looking on the bright side - YEAH.

While he doesnt have any clear idea of what is going on exactly, no treatment is needed except for the usual pain relief med.

However, he ordered Charmaine's right leg to be put in a cast and an urgent MRI of her knee so that he can have a better idea of what is going on.

And thats how our day begins on that unexpected note...

A cast... Charmaine is not going to be happy about it given her conscious nature. While she doesnt show any depression at her lack of hair, I know she is upset but she never ever lets it affect her. However, this is about as far as she is willing to show in terms of her cancer life. As far as possible, she will not want people outside the ward to see her in a plug, or her gripple needle, or even her pyjamas when she is inpatient, and needless to say, she really gets very upset when she has to go anywhere outside the ward with her pump and drip.

So, a cast is like me asking too much of her. I tried to prepare her and she didnt throw any fit when we were going downstairs to the clinic for her cast. But once we reached there, she started sobbing so sadly. I tried and tried to no avail, in calming her. Finally, I decided to let her cry it out. As usual, like the matured little girl she is, she calms herself down almost as soon as she feels better.

We were wheeled back to our room and barely 15mins later, we were informed that we should start getting ready for the MRI scan, which they managed to schedule in after office hours. (This was after much debate over whether do we proceed with GA or not; Sedation or not.) Finally, the decision was Oral Sedation because I honestly didnt want to go into another long 'fight' with the anasethetist to use the drug that Charmaine is comfortable with and it didnt make any sense to wait for a date that much later.

(The above was typed around 7ish this evening and when I typed until there, a Medical Officer walked into our room)

Apparently, our preliminary MRI Knee results showed some sort of fluid collection and than all of a sudden, Charmaine is hooked up to antibiotics, being treated for Bone Infection.

So here we are, from just an initial diagnosis of Trauma Injury yesterday, we were told this morning its more like a Fracture, and than now, we are being treated for bone infection with a cast (for fracture)!

I promised myself to write all the positive things that has happened today when I started writing hours ago. It is now 12 midnight and all the sudden change has confused me and made me lose my focus now.


Did I mention that Charmaine did really GREAT AND FANTASTIC considering that she was not prepared for everything she had to go through today. From the setting of a plug on her left hand to the setting of a cast on her whole right leg and successfully completing her MRI Scan under sedation only. YEAH!

I discussed with Charmaine like she is an adult, telling her that we will not 'take picture' today with her favourite white medicine because we are going to prove to everyone that she can do it! I asked her if she can do it, and she said YES! So simple, no questions, no why. Than I had to ask whether she wanted to take her picture with her orange medicine (oral sedation) or be wide awake talking to mommy. She said Orange Medicine. Thats it! Once again, no crying, no fussing. Its easier asking her to make decisions like these than asking her what she feels like eating for the next meal! :-) I have such a mature, intelligent and sensible little princess! YEAH!!!

In her own words: "I cant use my leg and I cant use my hand now too. I'm very uncomfortable." As uncomfortable as she is, once she woke up from her sedation, she is basically all smiles and cheekiness again. YEAH!

OH, one last thing, I just received a reply from our primary physician in MSKCC, Dr Kushner on Charmaine's scan results about an hour ago!



Cyn mommy

PAIN, excruciating pain.

Tuesday, July 27, 2010

I could write forever on this topic but nothing, no words will ever be able to truly and adequately describe how I feel everytime I hear Charmaine complains of "PAIN".

Pain is no longer an English word to me. It is more than a word. Or should I say it feels more like a ghost haunting you, an invisble knife stabbing a thousand times at your body or fire burning on your skin very slowly.

I've never been stabbed, never got burned and never met a ghost.

But when I hear the word "PAIN" from Charmaine, I can literally and physically feel my gut jumping out of my body, my heart sink into my stomach and I feel a knot in my intestines. I feel nausea immediately and I find myself gasping for air. Than I feel like my entire body is going to give way; every part feels limp.

Is this the feeling of death or fear? I dont know.

In all my 30 years of life, even after Charmaine was diagnosed last year, she was blessed with not experiencing much pain in her body except during those painful 3F8 infusions. The relapse on her right femur brought on a whole terrfiying and painful ordeal. Pain that comes on as suddenly as it goes off. Pain that will render her literally bedridden and immobile.

Yesterday she resorted to just dragging her butt on the floor to give herself a tiny bit of mobility. She found it somewhat amusing but it was sheer devastation for me as her mother to watch her.

Yes, she is suffering from pain on her right knee again. She started complaining of pain on Saturday afternoon. Based on past experience, I immediately restricted her movement totally and told her to lay in bed, complete bed rest. She said OKAY but would still hop around every now and than. Saturday night, I couldnt sleep. Her pain always seem to get so much worse at night because she has such a high threshold of pain that she could tolerate and bear with all of it during the day when she is conscious and awake. Come night time, her subconscious takes over and while her body is tired, trying to sleep, she feels all the pain and would often sob throughout the night. I observed her until past 3am and finally fell asleep when I was certain that the pain med were working and she is able to sleep comfortably.

Sunday night, it was horrible. She couldnt sleep the whole night. She basically just sobbed herself till morning wee hours until she was exhuasted, until I could give her the next dose of pain med. On Monday morning, she seemed to be better again.

Yesterday night, I adjusted the timing of the different pain med to fit her sleep hours and prayed that it would provide relief and comfort so that she can at least get some decent sleep. It worked. I watched till 3am and she was still sleeping good. So I decided I could sleep.

This morning at 8am, she suddenly woke up screaming in pain and crying. My little girl doesnt scream and cry in pain that much because she always tolerates the pain with her own amazing strength. I jumped up in shocked. And than she started mumbling, in between the sobs that she couldnt even move her body an inch. She just laid there in a awkward sideways position, crying non stop. I tried to help her but I barely touched her leg and she started screaming out in more pain. And than suddenly, between more crying, she said "I dont want to be like this forever~~~"

I'm heartbroken and I just want to pause the clock so everything would come to a standstill, a complete nothingness.

Finally, she calm herself down and tried with all her might to turn her body onto the other side. I need to know she can do that and I know she can!!! Inch by inch, she bit her lips down hard and pushed herself over. I was just so relieved.

I checked her knee, it didnt swell up worse.

One of the biggest reason why I didnt bring her in immediately on Saturday is because our doctor, Dr Aung is out of town the entire week. :-( It is unfortunate but I can only say I trust only her. I'm simply not comfortable with anyone else. And pain in her knee is not something I am confident that mother's instincts is always correct. How much or how far should I question the decisions of the other doctors who seemed to always prefer to start on a level I am uncomfortable with. Usually, once you stepped into the ward, its numerous blood tests...

But enough is enough, I'm going to bring her into the Emergency once she wakes up. And I hope with enough prayers and luck, we will meet only guardian angels who truly know what they are doing. Or, with enough prayer, maybe God will hear my cries and miraculously ease Charmaine's pain totally.

Please please please keep those prayers coming in. Please pray that this is not any infection and please pray that its another case of Charmaine over-exerting her already weak knee. Please pray that she will sleep soundly tonight with no pain.

Thank you so much.

PS: We have no results yet. Will update once I get something.

Cyn mommy

Another long one; filled with more drama and some pain...

Sunday, July 25, 2010

This is going to be another long post filled up with many of my disorganized train of thoughts...

Drama Continues...

Monday's Bone Scan~~~
Let me just start by sharing more of the inherent flaws in our medical system. If you recall, I ended my last post just before going to KKH for Charmaine's bone scan. By the way, Charmaine did it! She completed her bone scan wide awake without any sedation, smiling, giggling and saying that it takes too long.

Mid-way through her scan, a SSN from the MRI dept walked in to talk to me. There I was, talking to Char, trying to keep her calm and still, while more than half my mind was anxious, paranoid and just terrified. My sight was on the computer screen, trying to read the scan and praying desperately not to see anything that shouldn't appear on the body. And than in walked the nurse. She started asking me the routine questions for the upcoming MRI scan on thurs. Than, just like what my instincts felt, she went on to mention abt the plug. She said that I have to get SGH to remove her plug on Tuesday after the isotope injection.

I honestly wasn't sure how did I keep my cool and replied her firmly "NO". I went on explaining all the other procedures we have for the rest of week, while glancing at Charmaine from time to time, making sure she was okay. I wasn't expecting her to give me a break and sure enough, she didn't. She went on to say that, "the plug shouldn't be kept for more than 2 days, being higher risk of infection and risk of needle being dislodged."

Sigh. My emotions were running higher but I continued to explain that we are seasoned. Charmaine has gone back numerous times with a plug and that we all know how to handle the situation. But in my head, I was dying to scream out at her comments: "Pls don't try to bullshit me. (pls pardon my French) I've lived in a hospital longer than you probably have. Everyone has their plug left in their hands for days without ever having to change the plug for up to a week! Who are you trying to bluff saying that the plug should be removed within 2 days?" I amazingly kept those rude comments to my own consumption. But guess what, her B.S. didn't stop. She said since we will be going to SGH for injection at 8ish in the morning and since I refused to remove her plug, than instead of admitting on Wed at 3pm, I should admit Charmaine at 8ish in the morning.

It was absurd to me. I just told her firmly that we will leave her plug in and we will admit at 3pm as planned! If, as and when, the plug doesn't work, we will remove and set a new one and I will not even contest that decision. But if does work beautifully, than no issues. I see no point in her coming in the midst of my girl's first try at doing a scan without any sedation, trying to talk to me about something so absurd. Couldn't she have picked a better timing? Maybe I looked so calm and composed that she thought it wouldn't matter. Maybe she thought that Charmaine seemed so comfortable that it was okay to disturb her mommy. But what if I saw something new on her scan, what if I just went hysterical? Yes, of course she would probably defend herself saying that she would never have walked in if she sensed that I wasn't feeling right. But hey, it's besides the point to me.

I'm not being personal here but I just wish that there would be more professionalism and compassion displayed. I understand her concern of me/char being discharged with a plug BUT we have been living this life for the longest time. We are not the general public that comes in once in a blue moon for a scan or have a plug set. It's probably her job to still bring me through the entire 'protocol' so if something happens, it's not their liability. Sigh. I always joke with the Admission Office at the Childrens Emergency that they should have a 'Priviledged Clientele' or Express Lane for patients like us so that we do not have to queue after the general public when we bring in our onco kids, with a neutropenic fever, their immune heavily suppressed, holding an Authorised Letter stating that its a medical emergency.

To us parents, its simply ridiculous and just non-sensical. And believe me, I've written so many feedback forms that they always give us, leaving my handphone number, my email and whatever contacts they need but I've never received any reply. From what I've heard, I'm definitely not the only parent who has provided feedback. Similarly, most of the times, we felt that it was just a pure waste of our effort to even fill up the forms that doesnt feel like they were even read by anyone.

Back to our SSN who walked in.

After I made known my stand on the plug, we went to the usual questions on her being healthy - no cough, no fever, no runny nose. And to those questions, I answered, "Charmaine is well although she does cough a little bit when she wakes up in the morning." Upon hearing my reply, she asked: "Ohhh, if thats the case, do you want to consider to postpone her MRI scan to 1 to 2 weeks later since the anasethetist will most slightly not go ahead with the procedure, given her cough."

NOT AGAIN. This is the umpteen times I've been asked this question!!! And now, in the midst of Charmaine having her bone scan! WHY. WHY. WHY. I know it seemed like a valid question to ask because it involves the risk of Charmaine going through G.A. But at such a timing? And asking me, the nerve wrecked mother to make the decision? I had no idea how my brain was even functioning but it amazingly was and came up with an answer even I was impressed. I said: "I will email Charmaine's primary physician and inform her of Charmaine's few coughs and wait for her instructions." With that, she finally finished whatever questions she had to ask and left the room.

To say that I am drained and exhausted doesnt even seem adequate.

Tuesday at SGH, thankfully the injection went smoothly with no hitches.

But upon receiving my email, Dr Aung did call up the anasethetist and apparently spent some time trying to convince him that Charmaine is well enough to go through the GA on thursday. Her efforts were enough. She called me up on Tuesday requesting for me to bring Charmaine into The Pediatric Operation Theatre Reception earlier as the anasethetist wanted to see Charmaine himself before making the decision. I understood what that meant. More 'fighting' to come. Dr Aung did tell me that should I encounter any problems, be sure to get the doctor to call her instead.

Wednesday Admission~~~
Come Wednesday, I went earlier with Charmaine, met up with Dr Dilit which I must say is a very nice and patient doctor. 5 minutes into our exchanges, he went on to suggest that we should postpone it to at least 2 weeks later. Although I had anticipated this was going to be the main topic of our entire conversation, it still felt very exhausting and somewhat frustrating. To have to repeat myself over and over, again and again, trying to convince every other person along the whole process of getting scans done is just so tiring! It almost felt like the entire system is out to get me. It is his job to ask for postponement. It is his job to let me know the risks involved. He is doing what he is trained to do, and it is no fault of his. And it is my job to fight for Charmaine, to convince them how one shouldnt follow the protocols blindly, to explain our unique and urgent situation. It is my never-ending battle.

I said to Dr Dilit matter of factly that as her mother, I would be most concerned if I felt that she wasn't well enough to go through the G.A. In fact, I would be the first one to stop it. I consulted with Dr Aung as well. If Dr Aung felt that Charmaine shouldnt go through the procedure, I will respect that decision. However, since I feel confident that it was more of a dry throat thingy, and with Dr Aung's stamp of assurance, we needed the scan to proceed as plan. Because it is so important that Dr Aung has even pushed for Charmaine to go through 3 procedures on that Thursday itself.

Dr Dilit listened to my situation patiently and agreed that we can proceed ahead if all parties involved understood the risks, and when the benefits outweighs the risks. Charmaine doesnt cough during the day, even when I was discussing with Dr Dilit, she didnt cough a single time during the whole hour. Thats why I was certain that Charmaine is capable of undergoing the G.A. and because our treatment plan is dependent on this set of scan results, we need our results asap.

After we both agreed that the MRI scan and Bone Marrow Biopsy would proceed as planned, I went on to enqire about the drug they will use, specifically requesting Propofol.

I am not a trained professional, I have not spent any time researching on the pros and cons of using Propofol but Charmaine has used Propofol numerous times in MSKCC. Every time, the transition for Charmaine to wake up from the G.A. is very smooth with almost no issues. She is calm and she is alert, even happy!

Unlike the drug they use in KKH, which starts with a C something, it is all too traumatising. Charmaine will wake up agitated, disoriented, screaming, crying for mommy even when she is already in my arms for at least 30mins. And when she does finally calm down from all that crying and screaming, she would be totally exhuasted. As for me, I would be hating myself for having to put her through it, heartbroken seeing her struggle and fight everyone and everything unaware, wishing that I am the one suffering instead of her.

All these unnecessary suffering, for a simple MRI scan, just because KKH doesnt have a practice in using Propofol. I asked every single time from Feb to Apr, requesting for the anasethetist to use Propofol to no avail, because I could only speak to the Medical Officer whom I'm not even sure whether he/she did relate my request to the Consultant. We got lucky once in late April, I think, where Dr Bong was the consultant anasethetist whom I had the chance to meet and talk to personally because the procedure was going to be done in the Operating Theatre. She just returned from Boston, where they were trained to use Propofol. I discussed the many 'WHYs' in terms of the drugs used and the different sedation methods and the reasons of having to use a plug instead of the child's portacath for G.A.

I discussed some of the same questions with Dr Dilit too. One of the most prominent reasons stated is that what is in placed in KKH has been practiced for many many years and everyone is comfortable with what is being practiced. It is definitely not fair for me to say that one system is superior to the other. I am also not knowledgable enough to know the pros and cons between the different methods. In fact, when Dr Bong and Dr Dilit tried to explain, I was only able to follow half of whatever they said because it gets rather technical. However, from purely a mother's point of view, the stark contrast is simply too overwhelming to be disregarded. When the kids' porthacath can be used to administer the drug (which is one of the reasons why a portacath is even invented in the first place), why on earth would I want to subject my child to numerous plug setting which is all too painful. On top of that, you have to wish for tremendous amount of good luck to get a good Medical Officer who can actually do a decent job of setting a simple plug.

Trust me, most of the M.O.s can be as disastrous as the Houseman. And the drug propofol. Why would I want to put my child through such traumatising G.A. procedure when I know that there is the very existence of a drug that will work beautifully on my child? [Dr Dilit did eventually called a Senior Consultant experienced in using Propofol, Dr Serene Lim back for Charmaine's G.A. THANK YOU!]

A system that can be improved~~~
This is just to name a few. There are so many more frustrations for me. When we first returned from NYC, I was almost always frustrated, on top of being worried and stressed. Frustrated at the system which at times, just seemed so ridiculous. I fought every time, and I realised that I must have had passed on some of those frustrations and stress to Charmaine as well. I wasnt going to be easily convinced either. It gets on my nerves even more when people try to politically position their stand and totally go off topic. It got me so depressed, stressed and upset. From trying to calm me down with phrases like: "It takes times", Dr Aung finally told me one day to not fight the system too much. Sigh...

So ever since that day, we try to work around the system and I sort of just became nonchalent. I gave up trying to fight to make it better for other families because it was taking a huge toil on me.

And now that I've lived through more of such days, it really opened my eyes to a different perspective. One that is most probably inherent in our entire country, not only the medical system. The reality is such that most of us are aware of the flaws in the various systems, and yet, more than often, nothing will be done to even try and change it, until something disastrous happen. Take the lorry ferrying workers dangerously incident, we see it everyday. And until you see more fatal accidents happening, everyone just ignores the problem. What about the belting up of school kids in buses? The same applies for the medical system but I personally feel that it is going to take a whole lot more effort to improve the system. We have some wonderful, caring and loving nurses and doctors but they themselves succumb to the mostly old, rigid and inefficient system developed decades ago, and probably most suited to that decade.

Thursday MRI Scan ~
Having said all that, I just remember that I had forgotten to mention about what happened for our MRI scan. The blunder which is most unacceptable to me, even though I could easily guess how it came about.

When we admitted on Wednesday in preparatio for Thursday's scans and biopsy, I noticed that the Request Form put up for our MRI scan only stated 'FEMUR/KNEE' on the parts to be scanned. Our previous MRI scans in Feb and Apr were both consisting of 2 parts, namely the femurs and the pelvic area. Being careful and paranoid, I went up to the Medical Officers during their afternoon rounding and told them specifically that: "I need you to please double check with Dr Aung that she had indeed only ordered one part to be scanned - the femur only and not that the pelvic area was left out because of some sort of miscommunications again". They noted my request but never got back to me.

Later in the night, I finally got hold of a SSN to check on the status. She got back to me, saying that they added another Request Form with additional parts "HIP/PELVIS" after checking with Dr Aung apparently. That looked more correct to me but my instincts told me to be on constant alert mode after the past 2 weeks. I have a habit which I have developed over the past 1.5 years in the medical world, I ALWAYS LISTEN to the doctors' discussions or nurses discussions. Most of the times, most of the consultants dont make it a point to even make it discreet. And some even talk in such high decibel that all the families in the room can hear their child's case openly. I should say we are used to it. Nonetheless, I always tend to pick up the more subtle points which may not be transmitted over to us during such discussions.

The next morning, my 'listening' skills literally saved the day. Had it not been for my ears always being on the alert mode, I wouldnt dare imagine what could have happened. Already in a totally drained and stressed mode, anticipating Thursday's full day of scans and commuting, my ears didnt fail me.

It was about 8am when we reached the MRI suite with our SN. I was sitting down on one of the chairs with Charmaine while the nurse handed over Charmaine's medical files to the reception counter for registration. And than, while listening to Charmaine, I overheard their discussions; something about having 3 parts to be scanned. Immediately and instinctively, I focused all my attention onto them and continue to observe their ongoing conversation. I was quite certain I heard 3 parts and although I didnt catch the entire conversation, I was sure that something was amiss.

I went up to the counter, interrupted them and asked in a concerned state, what was the 3 parts that they mentioned. They mentioned something like: "Yeah, your doctor ordered an additional part last night on top on the 2 parts". I said while I wasnt sure what the 3 parts meant but Charmaine has always only needed to do 2 parts of body scan. Than they tried to explain to me: "There was this KNEE/FEMUR which is actually 2 parts but they are charging me as 1 part, and that on that same form under some instructions box, some doctor wrote a chunk of words which included "S.I. Joints which is the 2nd part and the new form that stated "HIP/PELVIC" is the 3rd part.

In all honesty, I try my best to educate myself with all the medical jargons and all these new drugs, new procedures that I am learning but it is very difficult to fully grasp all the concepts when I am retarded and stressed. And I didnt study biology during my school days so body parts isnt something I am good at.

I said anxiously that I wasnt informed that there was a new 3rd part to be scanned and what was this new part anyway. And if indeed there was a new part, WHY is there a need to scan a new part? I needed answers and I needed them fast. The reception clerk was very understanding and told me and the nurse that if we werent sure what was going on, it would be better to call our doctor to check before we proceed.

While our nurse was trying to reach Dr Aung, the clerk continued saying that, "Ya, better check it properly because one more part is more expensive". She missed the point entirely! I told her that I was more concerned that this additional part meant an additional 45mins of risk from G.A.! And with 3 parts to be scanned and one bone marrow biopsy to do done immediately after the MRI, it would mean we need at least more than 3hrs to complete the procedure! Oh god, and I have to rush Charmaine down for another MIBG scan at SGH at 2plus in the afternoon. Timing would be ridiculously tight with these additional 3rd part and I am getting even more freaked out whether she will wake up in time for the MIBG. On top of that, she has to be sedated for the MIBG!!!

While I was getting more panicky, our nurse informed us that Dr Aung said she was at ICU, couldn't talk, told our nurse to call Ward 76. ARGH. Not at this time Dr Aung. Our nurse, obviously wasnt aware of anything at all which is always the case. (I dont blame her) She managed to get hold of Dr Mya and I explained desperately on the phone to her, but I knew that she wasnt going to get what I was saying! She promised me to call Dr Aung and did call back.

I suggested to our nurse to just flip through Charmaine's old files which should contain her previous Request Forms so that we can compare. We found the one dated April which stated "Lower Limbs". The first one in February was nowhere to be found. Great, ISO someone? Incomplete or missing forms and documentations???

When she called back, she said that the S.I. joints were included in the last scan so its correct. ARGHHHHHHHHHH! It wasnt correct! For godsake, I dont even know WHAT is this S.I. JOINT! All I knew was that it had always been 2 parts!!! And than I turned around and saw Dr Aung rushing over. She just nodded her head and went straight into the MRI suite to talk to the radiographer. I was so relieved.

Guess what, she came out 10mins later and said she got everything sorted out. They will scan as per our previous scans which included her sacrum and that its 2 parts. She also said she should have remembered the words clearly. I was so relieved that we finally sorted out this confusion BUT I couldnt get over the fact that had I not been alert enough, Charmaine would have to go through an additional whatever part which would have been totally redundant and unnecessary!!!

How the miscommunication could have arisen~~~
I already got everything figured out as to how this confusion could have arisen. Although I cant say I am 100% certain, I am somewhat sure that my guess or assumption isnt far from the reality. What happens is that most of the times, Consultants would be giving instructions verbally to the team of Medical Officers and Houseman during their morning rounds. And we all know the potential of how easily information could be misinterpreted or just not conveyed across clearly. My guess for what happened in Charmaine's case is that as Dr Aung was giving the instructions, whether the MO or HO writing down the instructions wrote the parts and in the first case, missed the pelvic area or Dr Aung had simply forgotten to mention the pelvic area. I corrected the situation.

Next comes to the part where the person writing the words (in this case the MO or HO) and the person reading the words (in this case the radiographer) interpreted very simple and basic words differently!!! The person who wrote down our form wrote in such a way I found it rather absurd but maybe its a dcotor's lingo. The doctor wrote "FEMUR/KNEE" and "HIP/PELVIC". In simple english, I read it as Femur OR KNEE and Hip OR Pelvic. It didnt make sense to me but I dont know how the radiographer read it though. And than somewhere in the form, someone wrote a para, in it a S.I. Joints which happened to be another body part. My assumption is that whatever word that constitutes a body part, the Radiographer would include that in the scan...

A suggestion~~~
I thought that maybe the form should just include a small skeleton picture of a body so that the ordering doctor can mark clearly on the picture which are the parts that he/she need to be scanned, on top of just writing in mere words. Doesnt a picture speak a thousand words? Or maybe in Charmaine's case, state very clearly that this is meant to be a comparision from her previous scans?

My 2 cents worth~~~
Well, the whole point of me writing such a naggy long story is my wish to highlight to everyone the need to seriously listen and scrutinise everything, down to forms and words, and even conversations. Nurses and doctors, please pardon me. I have no wish to offend but I feel that such scrutiny from parents and families would help greatly in ensuring that blunders and miscommunications are kept to a minimal. Every nurse and every doctor has many cases and patients to look after, and I honestly do not expect them to remember every case down to the simplest detail. But until the day we have a really efficient system, doctors and nurses may have to tolerate families probing and questioning and caregivers will have to remember never to let loose their guard.

I used to find it totally absurd when I read articles of hospitals operating and removing entirely wrong parts of a patient's organ or just doing totally different procedures that's so wrong and so unrelated. But now, I think it may not be that impossible afterall. All it takes is for a doctor to write a 'Left' instead of a 'Right' and you may find yourself losing your perfectly healthy left leg instead of a diseased right leg. I know its simply ridiculous to cut off a healthy left leg compared to a right leg that probably looks dead but I'm just quoting an extreme example.

In all fairness, I must say that doctors in Singapore are mostly still wonderful and reliable. However, just like the advertisments on TV telling us not to take Singapore's safety as granted, I feel that all of us should not take the medical care of our loved ones for granted either.

While trust is important to maintain a healthy relationship between doctors and families, the entire medical system is just too complexed and too layered, and when information is passed on from one layer to another, important bits may get lost in transmission. Hence, please do pay extra attention and please dont have that "I dont know, I leave everything to my doctor" mindset. Unfortunately, 'YOUR DOCTOR' is not the only doctor taking care of you and in most cases, most of the decisions are made by other doctors trained to follow a certain protocol rather than treating you as an unique individual. And we are not the only patient 'OUR DOCTOR' has.

Charmaine is doing well physically except that some pain developed in her right knee on Saturday afternoon. I'm giving her panadol and observing her closely. Thankfully, there's no swelling. The pain seemed to have eased a little since Saturday however Charmaine says that she can still feel the pain and is able to tolerate it. Please do keep your prayers coming in. Praying for Charmaine's pain to be nothing more than just over-exerting her own knee and that with sufficient rest, her pain would subside totally.

Thank you everyone.
I'm praying for everyone's good health and happiness.
Thank you.

Cyn mommy

Charmaine is ok, all scans completed, waiting for reports

Friday, July 23, 2010

I'm so glad thurs is over and I'm so relieved that Charmaine has completely all her scans successfully, but most certainly
not without more glitches from the admin side. I will definitely update more because I feel
that everyone should be aware of what happened to me; it can happen to anyone.

Charmaine is recuperating well and is already up and running. But I'm totally drained. Pls give me a couple of days to regain my energy and I will be back to update more.

Thank you all for so generously and faithfully keeping Charmaine and our
family in your daily prayers. It has definitely helped us survive the past 2 weeks.
Thank you.

Cyn mommy

Jumbled schedules and scanxiety

Monday, July 19, 2010

Dear all,

It's been a really insane past week for me. As if my scanxiety isn't enough to make me depressed and emotional, hiccups and constant changes between, different hospitals and even different departments within the same hospital just made me even more anxious and confused!

I gotta say I didn't even know how I managed to even keep my little bit of sanity and rationale to be the center point of coordination for these 2 different hospitals and various departments!

Our scans and tests schedules were all planned one month ago! Some were confirmed easily and some could only be confirmed the week before due to doctors schedules coming out on a weekly basis for some dept? I was actually truly impressed with the efficiency and coordination of the various departments in managing to not only put everything in a week (the way MSKCC does) but they also managed to schedule them at the time we wanted! It's unusual for them to plan everything day after day as it takes more coordination. Not sure if it's a first for them, but definitely a first for us in singapore.

This was how our initial schedule looked like:-

1) 17th July, Sat - Set plug at KKH @ 8:30am and Inject MIBG isotope at SGH @ 9:30am

2) 19th July, Mon - Day 1 MIBG scan at SGH @ 8am

3) 20th July, Tue - Day 2 MIBG scan at SGH @ 8am

4) 22nd July, Thur - Admission to KKH, injection of isotope @ 10am and Bone Scan @ 2pm

5) 23rd July, Fri - MRI @ 8am and Bone Marrow Biopsy @ 10am

Everything seemed good. My crazy week started sometime on Tuesday when KKH Bone scan called me up and said: " Mommy, we called you to inform you that Charmaine's bone scan on thurs has to be postponed to August. We don't have a date but we will call you back. "

I, already functioning at a retarded rate, said politely but anxiously: "Why? And no of course! Do you have any idea we are waiting for her scam results to plan our next course of treatment for Charmaine? As of her last scan in April, she was only stable, not clear! If she isn't clear now, for which we do not know until her scans next week, she cannot afford to have a lapse in treatment for so long! And it was our NY consultant who requested for the bone scan so I NEED her full set of scan results to send to NY. " Thankfully, I had a wonderful lady on the other end of the phone. She said SGH just informed them that there is no more isotope so we are postponing all our scans next week but I will see what I can do. " I hang up the phone thinking that : " Okay, I need backup plan now. Maybe I can call Dr Chui to find out if we can schedule one at Mt Elizabeth Hospital if worse case scenario. " Rosemary called me back less than am hr later, saying that there was a last min cancellation on Monday @ 10am. But Charmaine has a 2hrs MIBG scan @ SGH! She said if I don't take it, there will simply be nothing else they can do. Finally, we decided we would push for it and I will try to reach KKH by 11:30am for her injection which expires by 12noon. So, now it is going to be a massive day for Char but at least we have all our scans still!

Than came Thursday. Another lady from Bone Scan called me. Another shock. " Mommy, we are postponing Char Bone Scan on Mon to a later date in Aug. " I have no idea how I managed to stop myself from not screaming! I said you already cancelled me once and now yet again!?!?!? I explained to Rosemary before, thought it was all settled? This new lady, just answered flatly, " we don't have the isotope so we cannot do the scan. We are calling to rest to cancel as well. " I decided that there it would be futile if I continued the conversation with her. I said ok and immediately emailed Dr Aung, informed her of the situation and asked for her advice; do we have to go to the private hospital or do we not do the bone scan at all?

In the evening, Rosemary called me back, said there's been a miscommunication and that Charmaine's bone scan on Monday has already been specially arranged and will still proceed as planned. All I could do was just say "thank you". I'm simply exhausted.

Its not all. On Friday, MRI called me up. " Mommy, we need to reschedule Charmaine's MRI to MONDAY. " Just how would a normal person react under such circumstances I don't know, but me, being emotionally drained and brain half shut, I just answered matter of factly, "we already have 2 scans scheduled on Monday from 8am all the way till 4pm at least! In case you aren't aware, we also have another scan on Tuesday. " I asked if it was a request put up by Dr B, the anasethetist whom I specifically requested for to do the GA for Charmaine. She said YES. I'm honestly glad that they are all so accomodating and has arranged for Dr B to do the GA and I am willing to cooperate as far as possible just to have her do Charmaine's GA. But, I couldn't. She said she would check and get back to me again. Shortly later, she called and said we would keep to Friday schedule. O.K.A.Y. Sometime later, another call from MRI, changed to Wednesday. I said OK but Charmaine has a Bone Marrow Biopsy which has to be done after MRI because it needs to be under GA as well. She said she would call Ward 76 and inform them of the changes so that they can make arrangements.

The drama isn't over yet. In fact, the most challenging one is abt to come.
On Sat, just before we were abt to leave home at 7:30am, SGH MIBG dept called in a panic and said : " Mommy, DONT COME! The isotope didn't arrive in Singapore as planned! I will call you back again. " Frankly, I don't know if it was too early in the day and I was retarded in response or I've matured so much in the past week that I could actually calmly said OK and not panic the usual way I would have. I'm worried mad, I'm feeling helpless but I'm at their mercy literally. If they said no isotope, there's nothing more that can be done. Shortly later, they called me back, said the isotope is now in HK and shld arrive on Monday. Pls come for the injection on Monday. I said, " Charmaine has a bone scan scheduled on Monday after MIBG. " The nurse was shocked. She said Charmaine isn't supposed to have her bone scan on Monday as it would affect her Day 2 MIBG scan results even if there had been no delay in isotope. The bone scan would have interfered with the accuracy of the MIBG scan...

Great. I'm dismayed, disappointed and shocked! Now on top of mommy being the center point of coordination between these various depts and hospitals, am I supposed to even know the dos and donts of nuclear medicine and various types of scans. I did inform Bone Scan that Charmaine is doing a MIBG and yet, in all her niceness, she still arranged the Bone Scan after MIBG. I asked, " Shouldnt the Bone scan pple know? " She said yes they should know. Sigh... This is a huge system lapse that someone needs to get it right. The MIBG scan is a very specific scan used almost mainly on neuroblastoma hence I truly can understand the lack of knowledge in it for the other departments but still, it doesn't justify this mistake. The Registrar from SGH called me personally upon hearing this messy situation and said that the delay in isotope turned out to be a disguise and that if we had gone on as planned, the results of the MIBG would definitely be inaccurate. Should I be glad? I know I probably should be but I'm still caught in the middle of all these mess with all the scan dates jumbled up and I'm seemed to be the one expected to make all the decisions on my own!

I'm stressed, I'm mentally tired and yet I'm expected to be rational, be able to plan like a seasoned secretary and decide like a doctor and yet fear and worry for Charmaine as her mother. How I've survived my past week, I honestly have no idea. I answered the non stop phone calls coming in, I discussed with the doctors, nurses and admin staff without shedding a tear or being hysterical. I kept everything to myself. I was void of much emotions which translated into this perfect calmness. I spent the entire sat morning in a primary school open house, answering calls and trying to fix a problem with the doctors.

Amongst the many suggestions put up by SGH registrar,

1) Cancel and reschedule all other scans in KKH for MIBG scan at SGH (because MIBG is more impt and that we will need to wait at least another month if we reschedule MIBG scan)

2) They will try to switch next week's MIBG patient timing with Charmaine's instead so we delay a week only and keep the rest of the KKH scans. ( Mommy, is it ok with you? )

3) Keep bone scan on Monday, inject MIBG isotope on Tue, keep MRI and bone marrow on Thursday and add on MIBG scan after we finish our morning procedures at KKH. Do day 2 MIBG on Friday. ( Mommy, but do you think Charmaine can take 3 big procedures altogether on Thursday? Will it be too much? )

Oh god, you honestly is maximising my potential to my limits. I had to repeat myself all over again when I speak to each new person. I undertand the importance of MIBG scan but doctors ordered everything for a reason. They need a complete set to validate between the different tests to have a more reliable result. And what abt bone scan? I can't get any appt until August apparently. Everytime they ask me if it's okay, I just want to scream and cry. But I found strength somehow to not go crazy literally. I appreciate the doctor asking for my opinion and my feelings but I found it almost absurd for a doctor to ask for my decision in such a way. I'm depending on a doctor, the supposedly trained professional to help me in the care and treatment of my girl's life and advice me on what should be done and what is better but yet I found myself having to make these decisions myself. You have no idea how stressed I was. I told him that being a mother, if you ask me and if I had a choice, of course, I wouldn't want to put her through so many procedures, 2 under GA, 1 with sedation in one work day! But I know the importance and urgency of all these tests, and health, risk and interferences aside, from purely a time consideration, it seem doable based on my previous experience. More importantly, being the doctor, he should recommend based on all the health considerations, possible risk and whether if the different scans will interfere with each other...

And I told him in my really tired and drained mind, " You really should be discussing with Dr Aung instead. She being Charmaine's primary physician should be the one making the decision. If she feels that she is comfortable with doing MIBG one week later, I would. If she thought that the tests are too urgent and she wants to push ahead with having 3 procedures on Thursday, I would too because I trust her. "

It was so ridiculous that SGH is calling me to inform KKH to call SGH. I'm speechless really. I had already called KKH myself even before they asked and when I called Ward 76, my instincts told me that they probably only had our old schedule, the first one we planned a month ago. That was Saturday and yet they didn't record any of the changes we made from Tuesday to Friday. I could only sigh. Told them to record the changes and informed them of the delay in MIBG. I explained the complicated situation and told them to inform Dr Aung because it was already saturday afternoon, we had to solve it fast.

Finally, Dr K discussed with Dr Aung and Dr K called to inform me that Dr Aung has decided to go for option 3. I said okay once again and hoped that it will be the last time any hiccups happen and that we can complete all the scans and procedures smoothly and safely.

( The above para was typed this morning at 5am but I didn't get a chance to post it and here's what happened this morning... )

I finally broke down this morning.
We arrived earlier at KKH this morning because I knew that the isotope would expire by 12 noon and the bone scan pple did request for me to go earlier last week but we weren't able to as we were supposed to be having our MIBG scan at SGH instead. So anyway, we arrived before 9am at Ward 76, called Rosemary and told her what happened. She being as nice as ever, said she would call the radiographer and check if they can bring forth her timing. Returned my call barely 5 mins later to say we can go ahead and register and bring forth injection of isotope.

I was hoping that Ward 76 doctor would set the plug for Charmaine because they are more experienced but they told us to go down to level 1 bone scan dept where the nurses are very experienced too. So I said ok. When I went down to bone scan, told them we needed to leave the plug in her hand because she has numerous scans for the next few days. She said "No" and it's against their policy. I said we have gone back numerous times with a plug, asked to speak to a more senior staff because I was definitely not going to allow anyone to remove the plug and subject her to poking on a daily basis! She said no point and that I should go up and ask the Onco outpatient if they would set the plug instead. I was very upset. I asked nicely twice before she agreed to call the outpatient. I mean all she needed to do was just to make a phone call on our behalf. I'm alone with Charmaine in a stroller and a luggage. I went up to 7th floor, than sent down to 1st floor and now they are sending me up to 7th floor to check. I don't understand...
Evetually, we were sent up to 7th floor Outpatient for setting the plug. We waited and as the clock ticked by, I got more anxious. It was already 10am, no one seemed to bother abt us. I went up to a nurse and asked how much longer we had to wait. She said she doesn't know because there are 2-3 more patients ahead of us with long procedures that will take more than an hour! I explained the urgency, she smiled so sweetly but I was fuming mad and I wanted to cry so badly. Than she said, we cannot do anything abt it. I wasn't trying to be unreasonable or impatient but the only isotope that we had gotten after so much effort was going to expire at 12noon. We can't afford to wait and yet she could smile so nonchalently at my desperation. Where would I get someone else to simply set a plug??? I walked out of the room and all these days of stress just got into me. I started crying outside. At that moment, Nurse Linda and Nurse Nuru saw me, walked up to me and asked what happened. I explained that all I needed was a doctor to set a plug but why am I being kicked around like a ball?!?! And my isotope downstairs is expiring soon!!! They immediately ran to look for another Medical Officer Dr Khwan who is at the inpatient ward, and she agreed to help Charmaine. All it took was 15 mins from prep to finishing and yet why did they have to make a simple procedure so complicated?!?!?

Thank you SN Nuru and SN Linda and Dr Khwan! I was in so much distress and already at wits end. Thank you for not just following the policies blindly. You could have just ignored me and not bother but you didn't. Instead you went the extra miles to help me solve the problem. It is the only reason why I'm able to still breathe now.

Charmaine was tired and hungry. I woke up having a bad gastric at 5am, puked the whole morning and dragged myself to the hospital and nothing seems to turn out right...

Charmaine and I are at home now... We need to wait for at least 4hrs before we can have her bone scan. Tired and drained, with no place for Charmaine to rest comfortably, I decided to head home instead. We will return back to KKH at about 2:30pm for her scan @ 3:30pm. This is the first time Charmaine is going to do the 1hr scan without any sedation so please pray that she will be courageous and calm and will be able to complete the scan smoothly with no fears. I asked for her permission and she has decided for herself that she wants to try. I'm of course glad that she is willing to try but at the same time, I'm wondering if being awake is actually more traumatizing. At least to me, not knowing and not seeing is sometimes better because she wouldn't remember much of these machines and usually she doesn't even know what has happened, except that she had took a picture. Ignorance is bliss... But too much sedation isn't good for the body either... Nonetheless, since Charmaine has decided, I'm going to support her and help her go through it.

Thank you all for your prayers... I'm going to get ready to head out to KKH soon.

May everyone have a good week ahead.

Cyn mommy

Its 14th July! She is officially 5! HAPPY BIRTHDAY!

Tuesday, July 13, 2010

Hi everyone,

Charmaine was discharged last saturday without having to complete her antibiotics because thankfully, she didnt get any infection. Instead, she has flu like symptoms such as a bad cough and a blocked nose, hence we deduced that she may have caught some viral flu.

I know I have been falling back with my updates. Please accept my sincere apologies. So many times, I have so many things that I want to say but yet a part of me is tired, lazy and just preoocupied with too many administrative stuff I need to straighten out and too many chores at home undone.

Sometimes I am so happy that I want to rejoice loudly here and share my joy with everyone but yet there's something about jinx and my happiness that whenever I shout out loudly saying that we are doing great and everything is going on well for us, some annoying fever has to appear days after... hence I become really paranoid. Friends who are close to me will probably scold me for being ridiculous (AGAIN) but what can I do right... its just something that has caught on my attention and I really wouldnt risk Charmaine's health for anything.

Charmaine finally gotten her decayed tooth fixed last friday at KKH Dental so its one worry down for me. Jase dropped his first tooth last month and a second one is starting to shake. Its amazing witnessing every phase that our child goes through; every little thing seem so exciting and so heartwarming. Hmm, I'm thinking how I should collect every tooth and stick them nicely onto a scrapbook. Haha... Its so good to be counting baby milk teeth and I am getting all excited about Primary One! I'm so gonna get emotional and cry and embarrass him totally when I walk him through the gates on his first day. Opps, am I thinking too far ahead already? Yes, yes, I need to bring my focus back to present and current. :-)

Presently and currently, Jase and Charmaine are playing in the room, screaming and laughing at the same time. :-)

~~14th July 2005~~
Tomorrow is 14th July! Bet you folks dont know what day is it! Please allow me to refresh your memory. 5 years ago on 14th of July 2005, Charmaine is born! A healthy 3.29kg bundle of joy. She is unlike Jase, when Jase is born, he is so tiny and I felt like I would crush him easily if I wasnt careful. Charmaine, on the other hand, is chubby and tough! It felt like I was carrying a one month old baby with no stress. In fact, she could hold her own head up by 2months old! She has always been the feisty one from day one. I nicknamed her my little 'chill padi'. :-)

My little chilli padi has grown and grown to become a little princess. Although not quite the normal childhood, but definitely just as interesting and memorable. I had been so worried that Charmaine would get a huge stage fright and refuse to go onto stage on her birthday party but guess what, she proved mommy wrong! A big time! I even openly ask for all our guests to pardon her and her brother if they couldnt remember their steps as they had only one hour to learn 2 days before their performance. Well, I worried too much! (As usual) She not only happily walked up onto stage and even remembered every step correctly down to her curtsey! And to top it off, she sang the entire song correctly on her own!

I was in tears, tears of joy, full of pride for my little ones. And I cant think of another occasion where I am happier to be proven wrong! :-)

And from now until next week's scans, I am just going to concentrate on being happy and celebrating Charmaine's turning 5 everyday!

I am not going to even touch on that topic until we are near there.

Please say an extra praise to dear god for I am only able to be here rejoicing about Charmaine turning 5 and celebrating life because of his abundance blessings.

THANK YOU God and THANK YOU to everyone who has been with us throughout our journey.

Cyn mommy

Charmaine 5th Birthday Party

Wednesday, July 7, 2010

Love, Char

Touched and moved to tears. THANK YOU.

Tuesday, July 6, 2010

My deepest appreciation and gratitude to:-

Make A Wish Foundation

Grand Hyatt Hotel

Belcanto Music Studio

Pei Leng, Hwee Keng, Debbie and all the volunteers from Make A Wish for making Charmaine's Concert and 5th birthday party such a special and brilliant event! You have all granted Charmaine's biggest wish to hold her concert, just like old times when she was in school. And yoy have put in so much efforts to make it such a big gala that she sincerely believe that she's the superstar for the day!

Teacher Edward and all the big jie jie who volunteered their time to sing along with Charmaine! You all have given her the courage to sing her own solo! Thank you Teacher Edward for turning my dear Charmaine into a superstar almost overnight!

Anthony, Rachel, Mike, Pat from Grand Hyatt Hotel! All of you went all the way out in making our stay so comfortable and pleasant! In fact, we were treated like royalties! Thank you! I've heard from all my friends and family that the moment they stepped into Grand Hyatt, they were chaperon around like VIPs! Such exemplary services can only come from your hearts. Thank you so much for making this event SP heartwarming and yet so grand! I will remember this and everyone of you for the rest of life!

Dr Keith Goh, Mr Ian and Mr Paul for taking time off to grace this event. It's such an honour and pleasure to have you with us!

Sister Helena, nurses from KKH, CCF, Cordlife, all my family and friends...

THANK YOU for coming to support Charmaine!

We are all so blessed, so fortunate and so honoured to have all of you be a part of this special day. Everyone of you made it all the more meaningful and memorable. Without all your love and support, we couldn't have made this concert and party such a success.

Thank you!

PS: We are currently inpatient for her next chemo. I will try to upload pictures and write more when I get more time.

Please bear with us as we will be commuting daily to and fro, and it's primary one registration now! Gosh, can't believe that my little boy is already going Pri one! I'm getting old!

Cyn mommy

Dr Keith Goh, Mr Ian, Mr Paul, all the volunteers, my 'baby sitters' and everyone who turned up to support Charmaine's concert and birthday party!

Discharged last night but still neutropenic.

Thursday, July 1, 2010

Feisty Princess Charmaine. Design by Pocket