When we come home from Vancouver Monday night, Kara had the house cleaned and waiting. Grandma and Grandpa Dueck and Rose and Gloria, brought delicious borsht soup for supper. Renee's cousin Krista and sister Alayna joined us to make it 11 people around the table for a wonderful time of fellowship.
Ronald McDonald house here is 0K but there still appears to be no real management in place. Everything is filthy. They have lots of staff that say ''hello" readily enough, but do nothing all day. The kitchen has 20 year old mosaic tile counters with black in the grout lines. This morning at 8:30 all the dining room chairs were on the tables upside down (with all the chair seat filth and last night's ice cream transferred to the table tops). While I was trying to eat someone came in with an old upright vacuum and started vacuuming the floor.
We saw Dr O'Reilley and Dr Steinherz yesterday. This morning Martha is donating blood so they can start some new procedure for which they think they will get FDA approval by mid-December. Renee will get a line put in this morning and get her spinal fluid chemo while under sedation.
When we saw the hospital accounts manager yesterday he made sure we understood not to worry about payment for anything. The Physician's Billings department had just called earlier in the morning asking for payment for $30,000 outstanding from 2 years ago. He said not to worry - he would take care of it. Clearly this is a unique situation. The American Medical Association has already approved this mysterious procedure.
Dr O'Reilley tried to explain it- I made some notes I can't understand either: 10/31/07 Renee went into easy remission last time - let's do it again-
2 plans to get rid of leukemia includes 2ndary transplant
We have found a matching unrelated donor. If we do a normal transplant Renee could get graft vs. graft response that could potentially be fatal.
Will bleed Martha to create WT1 antigens. We expect FDA approval by Dec 15
White Cells only
Peptides of proteins treatment is Now on IRB approved protocol
1. Chemo to remission
Transplant from unrelated donor. T cell depleted.
Martha's cells would be backup. Those cells would be like autologous donor.
We need to train Martha's cells to fight leukemia. 8 weeks to get that squared off. Transplant in January
Maybe out for Christmas in remission.
That journey starts again today.
Last night we took a walk though Central Park and took a horse and carriage ride to Times Square for dinner at Le Tre-Venezie Italian restaurant and then to George Bernard Shaw's play "Pygmalion" the play that inspired the Musical "My Fair Lady". What a show! When Renee read that it was playing she wanted to go there. When she checked the web it showed the show starting Nov 1. How disappointing! When we got to TKTS they were showing 1/2 price tickets available.
As you keep being on my mind, I pray for you.
ReplyDeleteEmily