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|| Tuesday, November 28, 2006 ||


the misdiagnosis
Imagine this...

enduring cycle upon cycle of treatments for a child, for an illness that threatens his life...

enduring complications brought about by the illness, or the treatments...

finding the means to get those treatments for him...

then suffering with him as he deals with his trauma from hospitals and doctors, seeing him in pain and upset and angry and... limited.

Or imagine this instead...

a child who cannot go to zoos and play in the rain.

a child tethered to a hospital bed at least once a month.

a child marked and scarred by two surgeries and many needle marks.

a child who's bald... and not because he just wants to.

a child whose body continues to struggle and fight... as it sinks and shrinks and dries up and hollows, from all the treatments.

And then... and then... be going through it for a year now, only to be told, there's been a misdiagnosis.

Wouldn't you be upset? Angry? Bitter? Resentful? Litigious?

Wouldn't you lose hope as you also lose confidence in the health system that's supposed to take care of you?

Wouldn't you lie awake at night, feeling guilty, and tossing all the events in your head, wondering where you've gone wrong, thinking about what you should have done instead?

And just being consumed with negativity... unconsciously needing some sort of retribution... and a great need for justice to be served.

Because someone, somehow, should take responsibility for what you, your loved ones have gone through.

All these... and am not even the child's parent.

So imagine the thousand deaths a parent must feel to be in this situation.

Imagine the fear of being too late... and where to get the money for the CORRECT treatments... and the silent wondering if it's really the RIGHT diagnosis this time... and if your child can still handle so much more.


There's really been a misdiagnosis after all. We've been treating Pyro for germ-cell carcinoma, an already rare type of cancer, only to have doctors abroad find that what he actually has is Ewing's Sarcoma... a rarer type of cancer.

(I must admit that sometimes, there's still ringing in my ears when I absorb this fact yet again... out of the sheer sadness of the situation)


See, the problem with St. Luke's (still one of the best hospitals to go to) and the medical culture here is that... when they test tissue samples, they stop testing once they get a positive hit, thus, usually not ruling out everything first.

That's how misdiagnoses are made.

Labs here often test tissue samples suspected of being cancerous with already some four (4) stains.

The doctors who freely offered their assistance abroad tested Pyro's tissue samples with 50 stains. Because you see, Ewing's sarcoma is something you conclude after rulling out everything else.

Are we angry with St. Luke's that processed Pyro's tissues? Hell, yeah!

But they are not the only ones to blame... because there's just far too many wrongs in our medical system here... and the stains tissues are tested by actually cost around P5k each.

That is no small amount.

You'd also have to acknowledge the fact that Filipino doctors are far overworked and underpaid... and some of the best ones preferring to work abroad for better pay, or better working conditions.

After all, it's hard to be a good doctor for a government hospital if the government itself is not providing facilities and medicine.

It's hard to be efficient and competent if you have to rely on trainings offered by pharmaceutical companies... because the government's budget for health services is a joke.

It's also hard to keep doctors on their toes when there's no malpractice law in the country...


And friends far and wide attest to the fact that even doctors abroad mess up. And of course, am referring to first-world countries.


But conceding all those points do not excuse them.


the fateful encounter
Dr. Barias of Doktor Ko arrived last Saturday night. He met with us Sunday morning, opting to visit Pyro at his home, bringing with him chocolates and a shirt for the child.

Pyro cried in his arms. Then again, he just woke up, was feeling under the weather, and the adults committed a grave mistake by introducing Dr. Barias as DOC Manny. Eh the doctor was wearing a white polo so it was natural for Py to overreact and get upset.

Later on though, Py was gracious enough to tell his Mom and Ninang that he wants to say THANK YOU for the pasalubongs. I believe he did, but still refused to be carried by the doctor.


Dr. Barias gave us an overview of what they did in the US and what we should expect. He inquired further on Pyro's history and answered our questiones... and listened to our concerns.

Later that night, my family and Dr. Barias met with Dr. Gepte (Py's oncologist), who will be working with the only two (2) doctors who have experience with the disease in the country and coordinating with an expert from the US. It's great that they're all UP grads and at least have common friends. The internet will also facilitate everything.

Pyro will be administered a totally different chemo cocktail. But they first have to work on what they refer to as LOCAL CONTROL, which would mean another surgery for Pyro, or another radiotherapy session... or both. Especially since the tumor is now pressing on his heart and making him very uncomfortable.

We start anew. We fight anew. Pyro fights anew.

And us in the sidelines, all we can do is help his family come up with the money necessary for all his treatments. We need at least around P1M...

And more prayers than before... because Pyro has been greatly weakened already by his previous treatments, and we need for him to have a strong body and a stronger spirit to continue fighting.


children are blessings...
...thus, they are also blessed.

And we cannot be grateful enough for the blessings pouring in for my nephew.

First, there were the kind words and prayers, both from friends and strangers alike.

Then, the pooled financial gift from friends, who knew that Pyro needs such more.

Then, the blog and e-mail brigade that brought the wrestler Batista to cheer my beloved nephew up...

And then, Ate Sienna's good find: Dr. Barias and colleagues abroad who offered their help for free, to give Pyro a chance.

And now, friends and strangers alike are rallying around us again, praying harder than before... and offering to help raise the funds required for the treatments. Dr. Barias has offered the services of his foundation for people from the US who may want to donate money, so that their donations won't be taxed. And there are already whispers of other possible ways to come up with the money.

All because Pyro is a child and he has to be given a chance.

All because when a door closes, a window opens. And people's kindness is infinite.

And my family cannot really thank these people enough.


Py Baby...

hold on for a little while longer... and fight harder. Fight for the childhood that is now. Fight for the future that is yours. Fight because we love you. Fight because you are loved.


Alon Sugarman survived this disease.

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