Gandalf Grows Up

From Drew:

"Funny it seems the more tired we get the harder it is to do these. We are just 2 months into this.

First a quick snap shot of where things are at after which I will fill in details as best I know them and make some corrections to older blogs.

First and foremost lots of questions yet!

We (Ethan, Drew, Beth) sat down with the Doctors (see below) Thursday the 7^th to discuss where things are at. The spine is clear both in tumor cells and tumors. We now have a sub classification of Germ Cell Tumor which is Mature Teratoma syndrome. This is treated by surgery then chemo and radiation. So in the next couple of days we get to give the Doctors a go ahead with this.

Details, remember seems like there are quite a few unknowns yet (to the best of my ability)

The meeting we had with the Doctors (Dr. Velez (Oncologist), Dr. Greene (Brain Surgeon), Shree (Nurse Coordinator) and Emily (Social worker). They had everyone there because Dad (Me) was rather snippy with them earlier in the week.

The terminology that is now being used to describe the tumor and cells is “mature” not “aggressive” however, aggressive may be a trait of mature. So, it is still a Germ cell tumor but they now say, “Mature Teratoma Syndrome” but based on my reading the “syndrome” part is confusing to me yet.  The basics of it are the Gandalf has grown up (mature) so it can no longer be bribed with candy (just chemo) and now we have to use something with more influence (surgery) to affect it. They checked the spine (MRI) for masses and the Spinal Fluid for any tumor cells. I earlier mentioned checking the Fluid for markers and this was inaccurate they were looking for actual tumor cells. Both the MRI and the Fluid are clean which is great news and means it has not spread.

Mature Teratoma is “less malignant” and from what I have read should be benign? This has created confusion on my part because I don’t understand how it can be both and from my research it may not be good but I will ask more about that Monday. I would speculate it ties in to my confusion with the “syndrome”. I think we will have much better answers when we physically get to the tumor.

Another question that will be answered is wither the tumor is just pressing on or grown into the Medulla (Mid-Brain) (see picture)

The Treatment now being suggested:

Surgery first, this will answer many of the questions (hopefully) and to remove as much of the tumor as possible. Then chemo can work and we believe it will due to past germ cell patients and what it did already to lower the Alpha feta protein (AFP).  It was stressed to us that there is not pressure to remove the entire tumor due to its responsiveness to chemo. This also lowers the need for the surgeon to take risks during the surgery. The entrance for the brain surgery will be back upper side, caddy corner to one of the eyes if you will and slightly higher. (see picture) There is a natural division between lobes of the brain here (Optical and Parietal) that will allow them access without having to damage the brain. It seems the biggest risk is moving the blood vessels located close to the tumor out of the way while they are working.

The survival rates are in the upper 90 percentile. Yes still a lot of different potential risk are involved but they are all in the single digit area.

After surgery most likely there will be another meeting of the minds with the new information and a new treatment plan will begin."