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|| Friday, November 10, 2006 ||

UPDATES AND UPSETS

Pyro had to return to the hospital because his platelets took a nose dive. But at least he only had to stay for 3 days there.

Then, there was WISH KO LANG... friends were gracious enough to say that Pyro looked very handsome (even if, in my opinion, he looked like a duck) even if he didn't smile in the interview.

(there were also comments that my brother was also handsome :) )

Then my father arrived from the US... bringing with him saved money to pay more of the debts my brother has incurred due to Pyro's monthly treatments.

Then Pyro's idol Super Inggo was featured making children with cancer happy. My sister and I shed some tears... because Pyro really resembled Super Inggo... and because kids with cancer resemble each other.

(but if you noticed, those kids' eyes shone with life... children are really very strong and innately hopeful, no?)

Then there's that thing that we've been working on.

See... my friend Ate Sienna loved me enough to love Pyro enough... enough to go out of her way to really find someone who can help us.

She found Dr. Barias from Doktor Ko, who is such a gentle and loving Fil-Am, who is really going out of his way to help us.

He has consulted with Pyro's oncologist... and they've agreed that there might have been a MISDIAGNOSIS of Pyro's illness, which would explain why he's not responding to the treatments as he should. It's either the good people of St. Luke's and PCMC really bungled his case... or they have not performed enough tests... or aren't as apprised with new trends or other information... leading to a non-conclusive diagnosis.

So Dr. Barias told us, LET'S START FROM SCRATCH. If it was a misdiagnosis, then finally we can correct it. If it's not, at least we know we're just dealing with the most stubborn cancer ever to come about.

In the event it was a misdiagnosis... or they have other/new findings, the doctors from US would then decide if the disease can be treated here. If not, then we're going to start a sort of fund drive for Pyro to be treated abroad.

A hospital and doctor has already committed to free services for Py. And as luck would have it, Dr. Barias and his foundation/organization is based in Michigan... where my Mom and relatives are. So accommodations for my brother, sisnter-in-law and Pyro will no longer be a problem (unless the hospital is too far from their Detroit homes). I'm sure my Mom and aunts/uncles can also pitch in for the daily allowance they'd require. But lab tests and medicines... that will still cost our middle-income family.

Like what Ate Sienna told Dr. Barias early on, our family could afford Pyro's treatments here... but treatments abroad are beyond us.

And it's really amazing that people have been very supportive... we're all just waiting for the diagnosis, so we'd know the next steps to take.

Which brings me to what's upsetting me.

St. Luke's has misplaced Pyro's old CT scan films. They're still trying to find it. And Pyro's tissue samples which should have been sent to the US first week of November are still waiting to be shipped. There's also this minor miscommunication going on between the oncologist and my family... because she's been insisting that Pyro's old records must be shipped with the tissue sample (and we're of the opinion that they're not necessary if we're starting from scratch... or at least, they can follow, since it's taking her or PCMC to gather/prepare everything a while). It also seems there's some documentation that she hasn't finished yet, and hasn't explained the significance of to my brother/SIL, which she's now asking them to accomplish...

Anyway, the thing is... Pyro has been suffering from on and off fever. He cannot undergo further chemotherapies. His parents are worried. And without considerable explanations and transparency from Pyro's doctors here, my family is bound to just get all the more worried.

After all, though Pyro hasn't died in the past year... we can't exactly say we have total confidence in his doctors (mostly because, there's just really a lot of room for improvement in information dissemination, treatment process, etc in our health system).

We're worried. We need more guidance. We need authorities on the matter.

Please keep your fingers crossed that it isn't too late for Pyro.... that the wheels have turned indeed for him getting cured.

And of course, the family is thankful to Dr. Barias and Gigi... and our other friends... those people who have been constantly loving of Pyro... despite their own problems.


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