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First Meeting with Dr. Reed, Treatment Plan for Soft Tissue Sarcoma

I may have mentioned this already, but it is worth repeating now. Today, as I type Mathew’s notes from our first meeting with Dr. Reed, as with all of Mat’s journal entries, I am also reading them for the first time.

As I am typing this particular journal entry I am heartbroken, again. Still. This was the plan for my son. The treatment plan for a rare and aggressive cancer. He had one chance, this was it. That chance came and passed him by. 


3-27-14

Mathew and I get up early to get to Moffitt for his blood draw appointment and then to the Sarcoma Clinic. We take the Monkey Bag, Mathew’s Journal, something to read for myself and some snacks for Mathew. I have a large shoulder bag, all of this fits in to. Over time we move to a rolling bag as our needs increase.

Instead of the front entrance at Moffitt, we go to the side, Gold Valet entrance. Mathew is still very weak and he needs a wheelchair. 

I’ve pushed people in wheelchairs before. My sister Maria was in and out of wheelchairs with a spinal injury. But pushing Mathew in the wheelchair, because he was so sick, hurt my heart every time. I would see other parents look at me, and I knew what that look was, they were thinking that me pushing my son with cancer was their worst nightmare. It was mine.


From Mathew’s Journal

Notes with Dr. Reed

  • Desmoplastic round cell sarcoma   — undifferentiated round cell sarcoma
      — tends to move over things with slippery surfaces within the digestive tract.
—after shrinking - Dr. Gonzales will go in for surgery
—after surgery may c/o microdeposits of chemo
—want to keep it as compressed as possible


  • 12-week plan
  • infections may be more prevalent
  • this tumor as rare as it comes

back and forth between VDC & I.E.
          every two weeks do therapy
                      *best response

  • try to get a complete response.
  • genetic change part that breaks in chromosomes, the head end of one attaches to the butt end of the other. (look up to clarify)

- Pete Anderson - look up this doctor
  • Bob Gillius - alkaline theory

-ANC - neutrophil count -
     counts keep bouncing up in the beginning**
  • check platelets and hemoglobin


*Ready to start next round of chemo
I:
E: confusion

*event-free survival
   and survival without remission

*let’s do 6 cycles and the prognosticate
     at least 3 months before we can do another surgery.

April 1st  follow up after chemo

My counts will drop in about 7 days


END OF DOCTORS NOTES
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