Happy 46th Birthday Singapore!

Monday, August 8, 2011

I rarely have the courage to re-read what I've written here over the years and I probably only did it once or twice in the year 2009. As we journey further and deeper into our battle, I find myself getting more wary... Especially when I know most of the entries I wrote would bring me tearing... A bit of me also finds it a little pointless at this juncture to re-read those entries... It serves no purpose and everything I needed to learn back then, I've already learned and the lessons are already deeply imprinted onto my brain...

However, today I find myself wanting to dig into the entry I did for Singapore's 45th birthday last year. I want to remember the fun we had last year. I also find myself thinking of all the kind folks who made last year's trip to MBS to watch the fireworks possible for Char. And of course, I remember a charming little boy named Liam. Another fellow warrior of Char... Last year, Char was able to bring a few of her Neuroblastoma warrior pals along with her to watch the parade... Liam was one of them... Unfortunately, he passed very shortly after that... We missed you...

I will never know who was the kind soul who called or wrote to NDP committee on our behalf but please know that your help is never forgotten by us... It may be a small gesture on your part but I think it was one of the best memories that we had, especially for Liam's parents. It was Liam's first time and last time, seeing those fireworks. I can still remember his smiles and excitement till today.

This year, I had hope to bring Char and Jase to watch the parade up close at the stand so they can soak in the atmosphere and the fun. Unfortunately, things have gotten tougher and we are still inpatient... But we have gotten ourselves a bed with a good view of MBS and we will be celebrating from our bed! If only NDP committee brings some goodie bags for the kids celebrating our nation birthday inpatient with chemo, and IV fluids hooked up to them! I'm sure it would bring so much cheer to these little ones! But well, for some reason, most of the kids here only have the TV and lots of medications for them.

As usual, I'm reminded of our volunteers and the ton of activities planned for the families in New York City. If only we have the same level of volunteerism in Singapore, or even awareness from companies who can do more for the kids... Here, if I'm even planning for any fun to include in the midst of treatment, I only have my 'thick-skinned face' and myself to depend on... So, anyone??? Any suggestions and complimentary tickets? I have a couple of families with kids receiving palliative care and is totally reliant on ourselves to plan any fun for our kids. CCF somehow is short of manpower I was told. Hence, most of the activities are balloon sculpturing during the very few special occasions, some donated meals for the families during Mother's Day, Father's Day... Hmm, all of a sudden, I wonder if the hospital has a part to play, with extremely strict rules and regulations??? That will be another puzzle for me to figure out on my To Do List. Hopefully, I will have some energy left after trying to figure out a cure for Neurobastoma.

But in the meantime, if anyone of you out there has any sort of connections to Voyage De La Vie, The Lion King, Disney Show, or even a trip to watch the premier of Smurfs... etc... I'm thinking for the kids receiving the Palliative aka End Of Life treatment... Even if Char is unable to attend due to her pain, there are kids here who would be able to benefit from... Please let me know... While I'm drained and exhausted most of the times, I wish to still do some bits for the other kids here... The other kids that are running out of time too...

I am a little disappointed with myself as I am writing the previous paragraph. I think I heard that there's quite a handful of NDP dress rehearsals this year and I wish it had occur to me earlier to ask for some sort of arrangements to bring Char and a few other kids to one of their dress rehearsals. Oh well, missed opportunity I guess. I'm a little retarded these days... Getting so tired so easily...

Before I proceed to the medical update on Char... I would like to ask for prayers for a dear friend of ours in USA. Ethan is suffering horribly with no food and no fluid, just pain medications and a very determined will to fight and live... www.caringbridge.org/visit/ethanjostad Please be warned that the journal entries are very depressing, so read them only when you feel you are able to handle the pain. I check his site numerous times a day, not sure what I am looking for... I am stubbornly praying for his miracle but feel so much pain knowing that Kim and Chris are watching Ethan suffer daily with no release... Ethan's will and determination are both so awe-inspiring and heartbreaking. I simply have no words to offer Kim and Chris... Cancer is cruel enough but to fade off so painfully is hauntingly devastating. :-(

I woke up on Saturday to a horrific update on Ethan but also to an awesome real life miracle in the form of Ryan. www.caringbridge.org/visit/amazingsuperryan Such is the life of cancer... But hearing stories like Ryan keeps me going. See Char daily keeps me going.

~~~ Medical Update ~~~
Hmm, how should I start? The good or the bad? The Newtonian or the Plutonian? What else can further uproot our determination to fight? Oh ghee, I sure learn it the hard way. There's a lot of new damages that can be done and they can all happen together to spice things up. We found out that Char had the awful Staphylococcus Aureus infection on Sunday. Then the E Colis bacteria is found in her urine on Monday. And we added another new bug to our collection. The Salmonella is found in her stool on Friday. So it's Cloxacilin for Staph Aureus, then Fortum for E Colis and then another antibiotic for the Salmonella.

The great news is both the Staph Aureus and E Colis cleared. Her counts are also up after the GCSF shots. We had 1 red blood transfusion and 3 platelet transfusion in the last week. Still awaiting the darn Salmonella to get out of my child's body! GET OUT, YOU BAD BUG!

The bad news is she is in a lot of pain. Non movement is still ok. But any small tiny shift will cause her excruciating pain in her left leg especially. So, Char is pretty much in the same position throughout the day, even through her sleep. But she will grit her teeth and push herself to an upright position whenever she feels strong enough to tolerate the excruciating pain that comes along with movement. She doesn't cry, she doesn't complain at all. Even when she is experiencing bad pains, she tends to go silent instead. Until her facial features are all cramped together and I ask her if she's in pain, only then will she answer: "a little bit". No matter how bad is her pain, her usual reply is "a little bit". I have no idea where she learned to tolerate and just 'suffer in silence' instead of being a typical kid, crying and throwing tantrums, which she is pretty much entitled to. Imagine a mother in labour with excruciating contraction pains, don't the drama usually depict a highly distressed lady, usually spouting some vulgarities, scratching the husband's arms or something to that extent? Not my princess. Not my brave and strong little girl, barely 6 years of age. Just the other day, we had a neighbour besides us. A older girl who probably has completed her treatment long time ago as she has a head of beautiful head. I sat on our bed, beside her, hearing her sobs, her complains (which she is totally entitled to, due to some sort of infection in her mouth) and then I looked at my child... Quiet as a mouse, despite her pain, despite her immobility, despite the numerous pills she has to swallow daily... Not a single complaint, not a single whine unless her pain is so damn bad. I honestly dont know how she does it. All I know is that I am blessed to have her. I am truly proud to be her mom.

Instead of feeling grumpy and bearing a grudge with what she has to go through, more often then not, she is usually apologetic towards this mom of hers. Just a few moments ago, the nurse came in wanting to take her weight, she tried. She gritted her teeth and tried to tolerate the pain while I tried to carry her into my arms. But it was simply too much to bear. She broke out in one loud cry of pain and said "Sorry mom, I can't do it." This is but just one of the many times when she apologizes for something that's totally beyond her. She feels bad but she shouldn't. Its not even any fault of hers! Even now, she just asked me, "Mom, I don't think I can take my weight today. Is it alright?" She is worried that she will cause inconveniences to the nurses for not taking her weight. THIS IS MY GIRL. :-)

A friend of ours gave us his complimentary tickets to Voyage De La Vie yesterday and we sneaked out officially from the hospital in between the 6 hours antibiotics break for a breather. Something as simple as traveling from KK hospital to Sentosa was a huge task because of the darn pain! Char wanted to go but was worried about her own pain as well. Nonetheless, we made it!!! She enjoyed the show although her pain bothered her throughout. Thank you to Uncle Charles for making yesterday happen. It was a much needed escape for us!

Alright, time to say goodbye! As I type now, we are battling another latest challenge - blood in stool! Another latest antibiotic to be added! Never had that one before, just added another new vocabulary to my Medical Journal!

Please pray for Char's pain to go away and for our new drug to work the miracles on Char! Also, please think of the other kids fighting cancer as well - there's too many!!! I, in the meantime, is trying to undo my Newtonian brain into a Plutonian one.

Rejoice in the new day as you are alive and remember the rest of us fighting to seize another day!

With love,
Cyn mommy










4 comments:

stn said...

Hello, I really admire dear Charmaine's courage. May she continue to fight bravely towards getting well! (:

p.s. we managed to get an ndp goodie bag (we weren't spectators, but my dad was a security officer) and was wondering if Charmaine and Jase would like to have it. I cannot think of anyone who deserves it more. (: But I'm sorry there is not enough for everyone and the other kids though. :(

kittymin said...

I thank god for this feisty princess. I admire her courage and mental strength. You know what? Though God has not cured her of her cancer, he has given her happiness, contentment, courage and strength. Jiayou mummy. Continue to fight on!

Sarah! said...

Hi,

I saw you and your two lovely kids awhile back at Universal Studios and I just dropped by to say how amazing you guys are for being able to survive through such an arduous, painful ordeal.

Please help me tell Charmaine how incredible she is for being such an angel, and let her know that she's already a winner in everyone's eyes!

Also, tell Jase that he's a wonderful brother, not many brothers this age know how to love their sister this much.

Praying for a miracle for you all, and NEVER lose hope! Everything will be okay in the end; if it's not okay, it's not the end!

The Ng Family said...

Hi Im interested in providing 12 tixs to the upcoming sesame street show in sept, for the children under palliative care and also charmaine, if she's able to. My contact rxsti57@gmail.com

 
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