First, I don't understand what is appealing about L.A. I'm sorry if you live there, or you love it there, but I just don't get it. Traffic is horrible. I know San Diego has its bad traffic, but it never seems to be as bad as the traffic in L.A. is. I don't think I could ever get used to that. We were about an hour late to our appointment (luckily they told us to be there an hour before our actual appointment, so it worked out okay), due to the last six miles of the drive. And then parking at the hospital was pathetic. The main lot was full so we were directed to the lot across the street, which of course was also full so we were told that the only option was valet....ugh!
And onto the actual news:
We met with Dr. Marachelian who is just about the nicest person ever. She talked to us for about an hour and a half and I got the feeling she would have gladly stayed longer if we needed it. She specializes in Neuroblastoma, and 95% of her patients are NB kids. She didn't come right out and say it, but she is the NB expert in California at least.
Basically she told us what we learned previously from Dr. Kim. That she thinks the tumor is on its way to maturation and the best course is to just wait it out. As the tumor matures the cells move from being neuroblastoma cells to ganglioblastoma cells to ganglioneural cells to neural, or nerve cells. She explained that neuroblastoma responds to chemotherapy and nerve cells do not. The fact that Madeleine's tumor did not respond to the last few courses of chemo could mean that the cells are starting to reach maturity. However, because it is still growing, it is evident that there are still some cells that are differentiating (maturing).
Dr. M meets with the L.A. tumor board tomorrow and they will decide then the best way to proceed. Madeleine will need more surgery, but it could be a biopsy (which I believe is a lot less invasive), or another surgery to debulk the tumor in the spine. In order to proceed with this new plan they need to know the pathology of the tumor. We haven't had any pathology since her surgery in June, which was six months ago. If the pathology comes back as she expects (ganglioblastoma), then we will have her Hickman line removed (yeah!!), and follow the tumor with MRIs every three months. However, if the pathology shows a lot of immature cells than they will have to come up with a new plan.
In case you were wondering, the abnormality on chromosome 11 that I posted about earlier, is NOT an inherited genetic thing. In other words, Ryan and I are not carriers and have about as much of a chance of future children having this disease as the one in a million chance that one child would get it. We've been told this before but it's always a relief to hear it again.
I should hear from Dr. M as to the tumor board's decision by Friday at the latest. The surgery will either be in L.A., or here in San Diego (we vote for here!).
We are very excited about this recent turn of events!