ELLA STILL IN COMA, NOW AT UCSF

Day 63 of Ella’s coma.  We have just moved from the Kaiser in Oakland, where Ella had her initial surgery and two months of follow-up care, to UCSF where she will undergo her radiation treatment.

Kaiser in Oakland is basically two buildings, one for the hospital and the other for the doctor’s offices and admin.  The problem is that the radiology department is not in the hospital, which would have meant Ella having to go into an ambulance 10 times a week, just to get her radiation treatment.  Kaiser is building a new hospital which will include the radiology department, only we can’t wait until 2015 to start Ella’s radiation treatment.

Let me say this about the surgeons who took out Ella’s tumor; Dr. Pang and Dr. Zovickian are the two men whom I deeply love over all other men on this planet.  These two incredibly gifted and compassionate surgeons, took the cancer from baby girl, and gave her a chance to live a full life. This isn’t a perfect world and I don’t have all of Ella right now, but Dachling and John have given Ella what so many children world-wide never get, a chance.  I owe them everything for the chance to see my daughter smile again, and if I didn’t think it would have made them feel incredibly creeped-out, I would have kissed both of them yesterday (on the mouth).

Rebecca S., Laura, Jennifer, Nicki, Melissa, Johnny, Gil, Dr. Hansen, and so many more, thank you for caring for my daughter, we love each one of you.

Alycia and I are completely changed people now, we can never go back to who we were before August 10th 2010.  We have already been through more pain in this 3 months, then most people ever experience in their lives.  In the last 7 years alone I have lost my mother, my beloved grandmother (and best friend) and now my daughter is in a coma, fighting a cancer so rare, no one knows why it happens or how it happens.

The people at UCSF have been exceptional in the last 24 hours.  Ella is due to start her treatment next week, she had a final MRI today, and tomorrow we’ll know more about whether this area of her spine does indeed show new cancer growth or whether it is just a blood clot, which is what we’re hoping for.

Look at that, I’m hoping for my daughter to have a blood clot in her spine.  How many of you with children have ever hoped for that?  Do any of you know what an EVD drain is or how an internal shunt works?  How about anti-seizure medications, G-tubes, trach’s, EEG’s or oxygen saturation?  I hope none of you ever have to know about these things, except only when they are saving you or your loved ones life.  There is something to be said for denial, for avoiding difficult things, I never thought I’d feel this way as I have always enjoyed facts and reality.  Sometimes facts and reality fucking suck, and believing in god or following sports or whatever other bullshit thing that detracts us from the death that is right in front of our eyes, is the only way to live.

But, we can’t go back, Alyica and I, we are forever changed and no amount of religion is ever going to make our lives any less painful.

Speaking of sports though, hall-of-famer Gaylord Perry was in Ella’s hospital room today, I shook his hand, he smiled, I told him Ella had an exceedingly rare form of cancer and has been in a coma for 2 months, he smiled.  As if my life couldn’t get any more surreal, my hand clasped in the hand of the first Cy Young award recipient, over the bed of my comatose daughter, on a Wednesday afternoon.

Just another day, when your kid has cancer.