Touched and grateful for the wishes

Wednesday, March 10, 2010

Post last edited by Jolene to include pictures

Hi everyone, we are at Day 30 post chemo today and hopefully her neutrophils have already gone up and beyond 0.75! As of Monday, we were at 0.39, very low but definitely coming up. Hence 2nd chemo was postponed once again to tomorrow.

Charmaine is doing well, eating well and being generally a 4 year old!



We finished her 10 sessions of RT on mon and I would like to say a word of 'thanks' to all the nurses, radiation therapists at treatment room 2 of SGH!



Thank you for being understanding when we had to change timings abruptly due to her transfusions and KK visits. And most of all, the radiation therapists at NCC for waiting more than 2 hours for our chirpy princess to fall asleep! Thank you!

In addition, thank you for all the wishes and blessings sent for my birthday.

I have to thank my kids for making me the happiest mommy.

Throughout the past year, the one thing that I'm regretful of is not being able to stay in touch with the very people whom has kept me alive till today - FRIENDS! I am what I am today, not only because of my family but also because of my friends! Nonetheless, I feel like an unworthy friend to them all. Even though I know none of them will blame me but it's just one of those few things etched in my head.

The 2 friends that I really regard as family more than anything else have once again warm my heart. Thank you Jolene and Charlene for celebrating my birthday with me like the way you celebrated Jase's birthday last year on my behalf. I'm truly blessed in many ways.

I'm not good at posting up pictures in here and hence you don't ever see pictures in my posting but I will try again and hopefully I can put up pictures of them cycling.

Other than cycling, my 2 babies found another new hobby! Doing work on their assessment books which I bought for char to get over the studying part she misses.



It really never fail to amaze me how the NYC trip has matured Jase and especially Char. Jase used to dread going to school after his sister's diagnosis last year as he couldn't understand the fact why Char didn't need to attend school wheras he had to, instead of spending time with his mommy at home, like his sister. But 6 months in NYC and away from school, he has found a renewed interest and passion in learning so much so that it hurts me.

You might wonder why would I be upset? Because I've had to deprive him of all the many things I had once envisioned for both him and Char. In fact, Jase developed a keen interest in drawing and has mentioned numerous times to me that he wants to go for lessons and even said he wants to go back to phonic classes (something he didn't like previously). It's one thing for a parent to sign their kids up for lessons and another when a kid tells you he actually wants the lessons! I'm of course more than happy to have 2 kids so passionate abt learning but because of the uncertainty in Charmaine's life, I'm so torn. I still am very much in a turmoil, not knowing how to plan ahead. As much as I've said that for oncology families like us, future planning doesn't always seem to make any sense since things can change any minute and the best thing to do is to take a baby step each day. However, the fact that I have a son about to start his primary one schooling soon remains a near future fact that I have to consider.



I'm definitely starting to rant, am I not? On days or moments like these when my head is cramped with too many decisions, too many questions, too many unknowns, I have to remind myself to just look at what I have right in front of me now - my 2 kids happily playing, and that's the most realistic present that I should be enjoying and treasuring. And of course, this shifting of focus would help me to breathe better and just live 'sanely' until god knows when those thoughts and fears would invade my mind again. Whatever it is, I am just very glad to be here typing this and surrounded by everyone that I love.

Hospital Crunch - the headline in today's papers is a topic very close to my heart, for obvious reasons. Its not only CGH or TTSH that has this problem, KKH is definitely experiencing this nationwide challenge as well. So its seriously not just a problem caused by our aging population.

Our young ones are also for many reasons, known and unknown, fighting for bed space in the hospital as well. I do not have the hospital statistics to prove my point but based on our previous 5-6 admissions in the last month, I think its more than enough to make me worry about what is happening to the young ones! I thought 'NO BEDS AVAILABLE" was only for Oncology patients who more than often require Isolated Rooms due to their low or almost non existent immunity but to my shock, when I enquired with the Admissions Desk, I was told it was a whole hospital issue - even normal kids who seek treatment in A&E for fever and others, also had to wait for a long time for a bed to be freed up.

On our previous admission on 25th Feb for Charmaine's neutropenic fever, we arrived at KKH A&E about 10ish in the morning and we didnt get treatment until almost 6 hours later about 4pm. I must confess that I myself was amazed that I didnt scream my head off while waiting for a bed and watching Charmaine's fever slowly creep up to beyond 39 degrees with absolute no treatment or whatsoever.

Its partially because I am now an experienced oncology mommy and no longer that paranoid mommy like the time Charmaine was admitted for her first neutropenic fever. The thing about neutropenic fever is that you are taught by your oncology doctor that its an emergency and should not be taken lightly in any sense. And of course, as a new oncology parent, I pretty much translated that to life and death urgency and can you imagine the first time she had a fever and when I rushed her down to hospital, I honestly believed that any seconds delay would harm her greatly! Of course, I'm not saying that I dont panic like I used to do. I still panic each time she has a fever but I guess I am able to keep my brain in my head and tell myself to try and act like a rational human being.

Back to our 6 hours wait in KKH, there was another father who smiled at me when I heard that he was actually going to drive his feverish daughter back home to pack while waiting for a bed which will most slightly be available when the patients are discharged in the afternoon. As for us, we were told by the pleasant admission office staff to maybe 'go for a walk' or 'go for lunch' at 12ish since the bed wont be available until 2:30pm. I smiled back and replied "OK". (I only managed to do that because Charmaine's fever was in the mid 38 range but frankly, I do not wish to discuss about the system lapse here). Besides, I know that KKH doesnt dispatch their nurses down to A&E to treat the onco patients and since without a room, pretty much nothing would be done on Charmaine.

I have to sigh sadly at what the world is becoming into. Whats up with the more number of sick children? Whats up with the lack of beds in hospitals? Nursing and medical professionals shortage is a scary reality... As Singapore progresses to build more and more hospitals, what about the mindset in treatment?

I have absolute trust and faith in the doctors and nurses in Singapore and thats why I have chosen to return to Singapore for treatments that are available in Singapore. However, there are certainly frustrations for me as well. I definitely cannot speak for anyone else except myself but I never stop to ponder... Why is the dye used in NY for the same MIBG scan better than the one in Singapore? When it comes to clinical trials, I can accept the reason that results are not proven and hence not allowed in Singapore but why dye? Dont we claim to have medical treatments of worldclass standards? But why... Why is it that even Hongkong has MIBG Therapy and yet Singapore has nothing... (I'm just stating what I know about Neuroblastoma treatments).

When I was younger and ignorant (still am ignorant actually! but no longer young!), I used to read news about Singapore wanting to focus on R&D in biology and wanting to contribute in finding more 'cures' for cancer. It was great news, just reading it as a normal person living outside the oncology world. But now, I wonder "HOW". Most of Singapore treatments are considered reliable, based on my personal opinion of course! Why reliable? Because we prefer to stick to methods and treatments that has been proven and probably even used for a long long time. Frankly, its not fair for me to comment so much because I am nowhere trained and skilled in any medical knowledge and seriously, what right do I have to judge and comment. (I just wish to clarify that I am not trying to judge anyone or any hospital or any doctor or any nurse for that matter, I am just using this avenue to rant and get my frustrations out of my head.)

Granted that no one will ever want to be a guinea pig in medical trials but by only allowing trial and tested (or proven and FDA approved or whatever approvals there is)treatments to be available in Singapore, wont we always be a follower? Just a random thought. I am not the only one who has a child diagnosed with Stage 4 Neuroblastoma in Singapore and there is at least one other parent who wished that there are other treatment options available in Singapore for her child, clinical trial or not. I know we have a long way to go in terms of allowing clinical trials in Singapore and frankly, I think I may never live to see that day.

For me to wish that cancer doesnt exist at all in our world is like me wishing for dinosaurs to come back from their exstinction, isnt it? But on top of me needing Charmaine to be healthy and alive, I do have a wish that rules and regulation in Singapore will advance appropriately in relation to the infrastructure development so that the next unfortunate child diagnosed with neuroblastoma will not need their parent to beg for that increased chance of survival, no matter how small...

What I can do here is to only provide a voice for the others who is not as blessed as Charmaine is...

With that, I hope that everyone is healthy, happy and enjoying your precious moments of being normal!

With love and hope,
Cyn mommy

PS: Charmaine is most probably admitting tomorrow for 2nd chemo pending good blood counts. After the rather frightening experience with our first chemo, I need your prayers to ensure that Charmaine will get through her 2nd chemo smoothly and our 4 days stay will be uneventful. Thank you from the bottom of my heart.

~~~~~~~~~~~~~~~~~~~~~

Other photos from cyn

Swollen knee


Walking Cola with plug still attached to hand


The kids with por por

7 comments:

jellies said...

glad to see another post..have been waiting for updates on Char. my 4yo keeps telling me everynight when she prays before bedtime, "Charmaine is still sick, pls tell God"... so we add Charmaine in our prayers and ask God to heal her quickly so she can go to school. keep the faith!!

by the way, you are not going back to NY anymore? the course of treatment there has ended in a way or is it just temporarily back in SG for the CNY?

Mama Joan said...

Dear Lord, pls watch over charmaine as she will be admitting for her 2nd chemo. Pls let there be as little discomfort and hiccups as possible. And Lord, let this chemo be the last one and Charmaine will be healed completely by thy healing powers . In Jesus name, Amen!

angelspoppen said...

The West such as U.S and some countries in Europe, they are still the pioneers in treating life-threatening disease including cancer. The only country in Asia that can match the 55% cure rate for neuroblastoma that I know of is Japan. The West is at the advantage due to their extensive research to advance knowledge and to increase the understanding of life-threatening disease. Other factors such as people mentality, culture background, attitude and the system used in a hospital in term of how a hospital is managed; all these play important roles in determining the type of care one will receive. To my opinion, Singapore may not provide the highest quality medical care to the ill compares to Western countries; still many receive safe, quality medications that are not so outdated. We, as mothers, when rocked by adversity such as illness, we need to listen to our heart and decide the best for our children. You are an exceptional mother. May all your wishes come true. God bless.

CEO said...

Before Charmaine, I also followed the blog of XinXin's mother (http://prayforshuqin.blogspot.com/).

XinXin also had stage 4 neuroblastoma, was treated in KKH without success then went to HK's Queen Mary Hospital, not sure if she had I131-MIBG therapy there though. Could also recall a Chinese boy (I think from Beijing) who came to KKH for neuroblastoma treatment without success. But I still think no harm enquiring with Queen Mary Hospital about MIBG therapy given the statistics and track record (or lack of) of KKH in neuroblastoma.

:D said...

=) charmaine is a really prety kid with an excellent smile. truly a gift from God. :D

J.H said...

That's such a lovely pictures, and char looks really sweet.

I've also following : http://www.adrianau.blogspot.com/
He used to be a patient of QMH in HK and now declared NED and start schooling. I really pray Char will be well soon too.

2am said...

I cannot imagine the "lack of bed" as a reason to delay any basic treatment for a waiting patient. I think If bed is not available, at least a doc should take a look at patient health and possibily adminster some medicine while waiting for a "BED"?? I hope the doc ratio is not tagged to number of "bed" in hospital....

 
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