December 10, 2008

L.A. Trip

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!


Danelle said...

Yeah for great news Booo for horrible traffic. As always let us know if you need anything.

Hope said...

It sounds like a good appt. I'm praying for the answers you want!

Jenny said...

Hi Amber, this may be TMI but I related so much when I read that you feel relieved each time you hear that the chromosonal abnormality would not affect future children. When Jack was 4, I was pregnant and we found out there were a bunch of problems, and ended up delivering our little girl at 23 weeks gestation. She died being born. That was by far the hardest thing I ever went through, but my point here is that she was autopsied and it was discovered that she had a chromosonal abnormality (hers was monosomy X, also known as Turner's Syndrome)and we, too, were assured that it would not be likely to happen again. Of course, I still feared the worst and wondered, and when I got pregnant with Tucker a few years later I was scared to death for the entire first half of my pregnancy that they would be wrong. Of course, they were right, he is perfectly healthy, and I did all that stressing for nothing- lightening doesn't strike twice! I hope that brings you a little more relief and we are keeping you in our thoughts and prayers!

Ericka said...


Amber, you do such a good job of explaining what is happening with MG and her gremlin tumor. I feel like I have a decent understanding of what is happening, despite my brain's first reaction of "isn't a tumor maturing a bad thing." Thank you for keeping us all updated through this blog...

big hugs and love all around.

Karen said...

This posting has invoked tears of joy. Sounds like the nightmare may be over soon. Can't wait to hear more news! Big hugs to you all. See you in 14 days!

Nick said...

I'm so glad you got to sit down with "the experts" and even more glad that they were kind, personable, and willing to take as much time with you as you needed.

And yes, LA sucks. :)

Anonymous said...

It sounds like you may have turned the corner on this ...finally. I'm scared to be TOO happy. Like the bubble will burst if I celebrate too much or something. any news on when the biopsy or surgery will be? Grandma N

jocelyn said...

Hi Amber,
I'm a little teary (but cautious) as well hearing that you could be on the path to the end of this whole thing. I'm so glad your family is in such capable hands.

Let us know if you need anything.

Kyle said...

I'am happy to hear that this horrible experience may be getting closer to ending, but I also feel really bad for you and Ryan and Maddie for what you had all had to go through. Just want you to know that I think about my little neice all the time. We wish you guys the best, and look forward to seeing you in Auburn.