Wednesday, February 20, 2013

Turn the page

Chemo is done.  We have reached a  major milestone.  Now we move on.  Scans are next month.  The continued battles with Lucille Packard Chldren's Hospital rage on.  G's scans were scheduled, screwed up, and rescheduled.  After the second reschedule, I'd had enough.  I called and called and moved up the chain.  I threatened and lied and threatened some more.  I told them I was going to file complaints with everyone from JAHCO to the Vatican (that was the lie) before I got someone to listen.  And when they did listen, things worked out, but in the meantime I made a call to UCSF.   It was an amazing phone call.  I was not sure what I wanted to hear but it worked out.  I called and the physician that I spoke with was very excited to speak to me.  She was enthusiastic and energetic.  She asked the right questions and had many answers.  She was so enthusiastic that I figured she must be a brand new doctor.  Then I looked her up, 1974.  She became a doctor when I was 3 years old and is still fired up.  I have got to meet this person.  I called for a couple of reasons, one, because I'm tired of dealing with Packard's overcrowded overextended, overbooked, staff and facilities.  And two because I was not happy with what our oncologist told us about G's scan protocol for the next three years.  She will be exposed to a great deal of radiation from future CT and PET scans if we go with the plan as it was laid out to us Thursday.  The doctor I spoke to at UCSF just happened to have published a research paper on the effects of radiation exposure from diagnostic imagine studies.  I was blown away that I probably was talking to one of the most qualified people in the country to answer our questions.  She was easy to talk to and excited to meet Gabriella.  We made an appointment for Thursday afternoon and will be heading for San Francisco tomorrow.  Meanwhile, Packard finally got their shit together and managed to get G's scans all on the same day, at the same time.  It is amazing how difficult it was to get that done but I truly believe it is the best way to do it and will be easiest on G.
It was funny how good it felt to have other options for G's treatment.  Even if we don't decide to go to UCSF for the rest of G's scans, knowing that their are other options, and other doctors who will help us and give us opinions is such a relief.  I just wish that I had reached out to these guys a year ago.  Oh well, you live and you learn.

Team G


1 comment:

  1. If that was Dr. Matthay she is a total badass and we love her.