Updates on Charmaine and Jase

Monday, May 11, 2009

I thought I would do an update on the status of Charmaine and Jase.

Her Bone Marrow Biopsy was postponed as mentioned, the numbers of her health status weren't looking good. But it is a stark difference to how our little princess is holding on now.

Her constant jumping around, cycling around the sky garden, non-stop of chattings, all shows no signs of her being .. sick. For those who deemed her as a goner, you are all wrong. Our little princess, is so strong and chirpy, that now, she runs with her buttock shaking. My.. she has put on so much weight, i tell her, I cant carry her for long now. But the thought of next week, for her chemo, of course hurts us. So, we did not stop her for her continuous binging of chocolate milk, soya bean drink, milo, icecream and the what's not.

Now, her favourite is to play with the mattresses and blankets, hiding in the man-made cave with the Dora DVDs and dolls in it. Jase, of course, is her cave companion. Cynthia has no idea how the two kids can stuff themselves in that hot cave, but i guess, that is where they bond.

It has been almost 3 weeks since she last went to the hospital and it gave the kids time to adjust themselves. Now, Jase shows less of a problem and can mix with Charmaine more. There was sibling jealousy for a period of time and we are glad, they arent that obvious now.

The new maid is settling in sllllooowwly but mingled quite ok with the kids. At least, Cyn has a spare pair of hands to help her.

Jase has since, bore the brunt of Cyn's frustration, and Char's tantrums. He is taking it well, but for how long .. who knows? He is too young to understand why the special treatment to Char but let's hope when he turns 5, he can come to understand more.

Jase birthday is in a matter of weeks and let's wish him, Happy Birthday!! =D


Some quick information off from my memory right now..

A few of you have asked, why US? Why not in Singapore? For those who have followed the blog, you would have read that there is a clinical trial in US (New York), teaming up with a Hngkong doctor and hospital.

Dr had tried to get this medication that will increase Char's rate to 40-50% (exact figure cant remember), but to no avail. She needs to be a Hong Kong resident, which our dearest is a Singaporean. So no no to that. Hence, the next option, was to go to US. A quick check on the price tag, is USD350K, not including the other living costs which we try not to fret over it rightnow.

In veryvery layman terms, on how I interpret by reading on those medical articles.. there seemed to be two types of drugs out there on clinical trial and this one we are looking at, let's termed it as Drug B, is where Char's Dr is more familiar with on the developments.

The other, as far as I read now, though has gone through to Phase3 ready for commercial, it was pulled back due to some toxicity level.

Drug 3F8 is a 100% movine (mice antibody). In this case, this antibody will attach to a marker to perform antitumour therapy. The marker (GD2) will still be present even after chemo. A good thing. But because 3F8 is mice antibody, there is still a risk that Char's body will react against it. Note that all these are still in clinical trial phase as her age group, survival rates on such is not high.

Well, why not in Singapore?

In Singapore, she can go through all the chemo and surgery, but % will remain low. Based on Dr, only 2 out of 20 survive, and this is not including her age group. For this cancer, kiddos less than 3 years old, are in a much higher chance. Our dear Charmaine will turn 4 this July. She has completed her 3 rounds of Chemo, and 4th is coming up. After this, the plan would be to go through the surgery, and if possible, sending her to New York. Once she is there, the doctor will treat her with 3F8. We have touched base with the hospital and that is how we got the initial guestimate on the pricing.

There are actually alot more groundwork needed to be done before we can be sure of sending her there.

Jolene has also set up a discussion forum in facebook, so you can direct all suggestions there, or through email.



For those parents who are fighting with their kids right now, hang on to the faith. Your little ones will pull through it.

Love, Charlene


Juliet said...

Dear Cyn,

I'm not sure if you check your FB messages. I reckon you might not have the time.

I read in the blog that you will be flying to N.Y with Char. Recently, I volunteered at the Ronald McDonald House in Phoenix. They are an organization that helps family with children that are seeking medical treatments in a foreign country. They provide a very reasonable rate for the accommodation.

Do check out the Ronald McDonald House of New York.

When do you think you will be in NY?

Praying for you and Char.

Love Jas

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