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Mathew's Prognosis and Hindsight

From Mathew's Journal

Notes from Dr. Gonzales
3-5-14

 - pathology slides in right place.  There was a point where we thought that after my efforts to go get them and hand deliver them, that they had gone to the wrong place.
- Damon Reed oncologist

**Expectations
- broad category small blue round celled tumor
- if it is Ewing they need a confirmation at a molecular level.
- my liver cannot tolerate chemotherapy - hence the need for the stent.
- the stent may or may not be permanent.


Notes from Dr. Gonzales
3-7-14

- everything hinges on whether the liver improves
- large tumor back of abdomen - the liver
  • - falling short of saying what I have is incurable
  • - the liver needs to keep getting better
  • - 20% to 25% chance of response for Sarcoma
  • - different types of tumor may respond better
  • - vena cave still a danger
  • - Bilirubin at 5 bring down to 2
  • - got to find out what type of tumor

Hindsight, or what we didn’t know, was in one sense a blessing because knowing wouldn’t have changed anything, except our level of distress.    
Dr. Gonzales was very honest with us. When he told Mathew the percentage rate of survival he reiterated it by saying “That means in order to cure one patient I need to have treated another 4 patients that weren’t cured.” I recall thinking, so if it’s a numbers game, we don’t have enough players.
** I think I need to go back and ask them, at this point how many Desmoplastic Small Round Cell Sarcoma patients they had seen.


I see the commercials for the well-known and wonderful children’s cancer hospital and in the commercial, a voice says “One in 5 children diagnosed with cancer will die.” In my mind I always think, unless it’s a Sarcoma, then you can flip those numbers.

The other hindsight I highlighted was regarding the small round cell tumor. Pay attention to the commercials about treatments for certain cancers and they specify “If you have non-small cell” cancer this treatment is for you.
I spoke to a friend whose parent had passed away from small cell lung cancer and he was told that the small cell cancers are fatal.

I will do some research on this soon and post an update post.










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