HOW MUCH ENERGY DOES ANGER GET?

I don’t want to give it any, not one second!

But right now I am angry, Alycia is angry, our friends and family are angry and you are about to be too.

I posted the last blog two days ago ,although we have known now for 8 days, that Ella will need added radiation treatment.  We had a family meeting last week with the neuro-surgeons Dr. Pang and Dr. Zevekion as well Ella’s oncologist Dr. Kim.  It was Dr. Kim who told us that a sample of Ella’s spinal fluid, which was drawn right before her initial surgery, tested positive for cancer cells and that this positive result had warranted the additional cranial and spinal radiation that she was to get in just a week and half.

This additional radiation treatment, Dr. Kim told us, would cause Ella to have permanent cognitive and growth problems for the rest of her life.  The severity of these disabilities no one would know until later, but Dr. Kim assured us that she will have them.

Obviously this was devastating as we had been told that Ella would only have acute radiation at the tumor site, and possibly chemo-therapy (which itself causes adverse health issues) but that her long-term prognosis was good, pending that the tumor was fully removed (which it was) and didn’t return. Of course we accepted this additional radiation treatment and all of the permanent issues it would cause for Ella, because weighing that against not doing it and having the cancer return, gave us no options.  Having my daughter alive is all that I care about, long-term health issues don’t keep me up at night (except for the crying and loss of sleep).

So for 8 days now myself, Alycia, our spouses and family members, friends and every person whom has read my last blog, has been emotionally compromised by the knowledge that Ella would suffer these disabilities for the rest of her life.  Now, I don’t for a second want to sound ungrateful for the treatment she has received here in Oakland, obviously we are thankful that the tumor was removed. Could it have been discovered last year when Ella was having the same symptoms but her doctor did nothing for two months?  Yes.  Would Ella be in a coma had that doctor done something last October or even in May of this year when those same symptoms resurfaced after having been gone for 6 months?  Who knows? (someone does).

But this morning I received information from Dr. Kim, that someone did make a mistake and we now know that during her initial surgery, a sample of her spinal fluid was mislabeled or switched , because Dr.Kim now says that she will not need that additional radiation treatment.

Begin feeling good right…….now!  Because this is INCREDIBLE and EXTREMELY POSITIVE news!!!!

I don’t want to take away from your celebrating, you deserve it, you’ve stuck with us, you’ve been emotionally dragged through the shit along with all of us and this is the first time any of us have had positive news.  So drink up, hug the person next to you (unless they’re the person who mislabeled Ella’s spinal fluid) and shout out loud, HURRAY FOR ELLA!

Now…….take a deep breath………squint your eyes, squeeze your brow, flare your nostrils and punch some soft, inanimate object next to you (especially if it’s the person who mislabeled the spinal fluid) and get pissed!!!

My little girl, the little girl whom has been in a coma for almost 6 weeks and whom was a week and half away from having many lifetimes worth of radiation shot into her brain and spine, is defenseless and unable to protect herself.  We as her parents are looking to these doctors to guide us, we don’t have the knowledge to save our child, we don’t have the tools or the medicine, we are at the mercy of these people.  And these people have just made a grave mistake that would have negatively impacted Ella’s life forever.

We have requested more information today, the name of the person whom made this mistake and where at Kasier here in Oakland we should be sending our complaints.  They haven’t given us this information, as of right now we don’t know where to send our letters our phones calls and we don’t know the name of the person who made this mistake.  As soon as we do, however, I will update this blog with that persons name and the address and phone number where the complaints can be sent.

I hope all of you will join our family in giving Ella a voice, and expressing to Kasier our anger that their lapse would have harmed her unnecessarily, for the rest of her life, and that they get paid to care for ill people, not make them sicker.

Glen.