Not what we hoped for but all is not lost

Well, we met with the oncologist right after the tumor board today and the news was not great, in fact just the opposite. The type of tumor Ben has is an Atypical Territorial Rhabdoid Tumor (ATPT) type cancer.

Now I will try to remember everything so it may be a little sketchy. The tumor is very aggressive. We need to begin chemotherapy next week. We have a number of options to consider at this point and are not 100% on everything but this is kind of the tentative direction. Monday or Tuesday Ben would get his Hickman Cathater. Through this they will administer chemo, extract stem cells (part of the therapy -- kind of a modified bone marrow transplant procedure), administer meds, etc. By the end of the week he would begin his treatments.

Ben would do 5 to 7 days of treatment, then be off for 2-3 weeks with close monitoring for side effects. After 2 rounds we will probably need to go to Boston or Houston for a new radiation therapy called Proton beam therapy. It all sounds very "Trekkie" doesn't it. He would receive one radiation treatmene a day for 6 weeks ~ish.

Then he would come back to Seattle for the remaining 3 rounds of chemo. The whole thing will take 6 or so months. With this type of chemo the odds are not great -- 30-50% survival. He has some good things in his corner like his age, placement of the tumor, and the way he has been recovering. The center here in Seattle is world renowned for cancer treatment and in fact we have a new treatment trial available to participate in as well. We will know after the first two rounds of chemo how he is taking to the treatment and whether we will need to go to Boston or Houston or just to go home and enjoy the time we have together as a family.

We have TONS of decisions to make at this point and like I said, still finalizing things. Your continued prayers are very much appreciated.