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|| Tuesday, November 28, 2006 ||STARTING OVER
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.
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.
|| Thursday, November 16, 2006 ||A WHOLE NEW BALLGAME
My SIL broke down at the FedEx shop last Tuesday, because they were refusing to accept the paraffin blocks containing tissue samples of Pyro's mass, saying that they needed a certification from PCMC that the blocks weren't dangerous. All my SIL had was a certification from Pyrp's doctor... because that was what she was told to get the previous day.
But due to Dr. Gepte and me calling the main office, the blocks were accepted and shipped. Dr. Barias has informed me today that he has received them already... and has this list of pediatric oncologists who were going to study the samples.
Meanwhile, Pyro had to be hospitalized for more platelet transfusion... and the ultrasound performed on him showed that the new growth is pressing on his heart... which is my beloved nephew is having trouble breathing nowadays.
His fever also refuses to go away.
And he has trouble sleeping.
And so we pray anew... that we can do something for him before his heart gets 'infected'... before it's too late for us all to really do anything.
Please pray for us. This is the second Christmas that we have to celebrate with Pyro's life hanging in the balance.
|| 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.