Friday, August 31, 2007

OK, starting this up...

I know that City of Hope has pages set up for patients there, but this is easier for me.

The idea of this site is so that people can find out, at a glance, what's going on with Richie and his treatment. He's going in for a Stem Cell Transplant on September 7, and hopefully he will have as good of luck with this part of his treatment as he has with the treatments he's had before.

Here's the history of Richie's illness.

  • November, 2006: Richie starts having mysterious fatigue. It wasn't a flu. It didn't lift. As someone who has survived Chronic Fatigue Immune Dysfunction Syndrome, I dreaded that maybe Richie had gotten the mysterious "factor X" that caused my disease.
  • December 20, 2006: Richie was admitted to Mission Community Hospital with unexplained anemia far below normal.
  • December 26, 2006: Richie gets his DX of Multiple Myeloma. Fine time to get it, even though neither of us are Christian or celebrate Christmas.
  • December 28, 2006: Richie is discharged (basically kicked out) of Mission Community Hospital. There is no arrangement for continuity of care -- he's told to go to the ER at Olive View/UCLA County Hospital. After waiting there all afternoon we are told that he can be treated outpatient for his MM.
  • January 2007: During the early part of the month, we are stymied by a lack of access to care, and Richie's deteriorating condition. We petition to get help at City of Hope. After Richie's left shoulder balloons to twice normal size, with attending pain, he is given an intake appointment. Dr. Stephen Forman, Chair of Hematology, becomes his coordinating oncologist/hematologist. Richie's "numbers" are not great: lots of calcium in the blood, not a lot of hemoglobin in the blood, and lots of MM markers in the bloodstream.
  • Late January-May 2007: Richie is first brought in for inpatient treatment at Helford Clinical Research Hospital at City of Hope, then outpatient treatment through Brawerman Outpatient Clinic, also at City of Hope. Dr. Forman, in consultation with Dr. Krishnan, chooses Velcade with Doxil and Dexamethasone as first-line treatment. It was a gutsy (and off-label) treatment regimen, and it was extremely effective in his case. All MM markers took off downhill at a remarkable rate of speed. There were side effects, some really nasty, others just annoying. However, quality of life was never diminished enough to discontinue the regimen. Dr. Brian Durie, the medical director of IMF, gives an informal consultation backstage at the FOR Benefit, and basically agrees with everything that has been done so far.
  • June 2007: Bone Marrow Biopsy done at the beginning of the month, no mutant cells found in the marrow. MM markers down almost, but not quite, to zero. Now that the disease is held at bay, an unrelated but troublesome medical issue could be addressed. And plans began to be drawn up for the next step in Richie's treatment: the autologous (cells taken from self and given back to self) stem cell transplant.
  • July-August 2007: Preparations for SCT. In two sessions, three times the bare minimum and twice Dr. Forman's comfort level of stem cells are harvested from Richie's bloodstream. As of 8/31/2007, it's full speed ahead. Check-in at Helford for the transplant is scheduled for 9/7/2007.

Anyway, hopefully this record will help someone else, and help those who care about Richie keep up with what's going on.