We had a good visit with cousin Leonard and Linda in Lancaster on Sunday. Lonita, who is Renee’s age, left Tuesday for a 2 week volunteer job in Hong Kong. We met the man, who collects most of the food for the Bowery Mission, where Renee volunteered when she was in NYC last May,as he attends the same church. Every week for 35 years, he has taken one or 2 truckloads of donated goods to help feed the poor in NYC.We went to a park nearby and saw some fall colors on the walk around the park. Later we had a delicious dinner at Jay and Rhoda’s. Click here to see our pictures. The trip to Lancaster took more than 6 hours, including all the spare turns, and 1 1/2 hours just to get oyt of the city. The trip back to NYC took 3 hours including only 2 wrong turns.
Tuesday we met with Dr. O’Reilly to talk about the Treatment Plan.
We have a tough time understanding all the terminology and the implications of the various options, but in summary, here is what I understand:
The math is in favour of chemo only at this point. 50% of chemo only treated AML patients are cured and never see leukemia again. Of the 50% that relapse, 3/5ths of them get cured when they get a subsequent bone marrow transplant. In Renee's case, an immediate transplant adds significant life and health risks, and if she falls into the 50% cure rate group, a transplant will never be necessary.
This is a peculiar situation with some complexities. They could do T-cell depleted transplant from mom (who has all normal healthy cells!) as the donor, if there ever is an emergency treatment requirement. Mom's cells are not likely to be a long-term cure, however, because they do not now recognize the leukemia. To do the unrelated bone marrow transplant from the 10/10 match donor carries a significant amount of risk. The antigen presenting cells that are matched to mom's HLA type from the transplant Renee had as a baby would present a significant risk for GVH (graft versus host or even graft versus graft) disease.
They would expect that mom's cells would be tolerant of the new graft in the same way that they are tolerant of Renee's antigens, and so theoretically there would be no GVH, except that the new cells would see mom's antigens and attack them possibly causing severe GVH. Mice transplants have shown that there are ways of mitigating the possible GVH response by doing a 100,000-cells-per-kg transplant to eliminate mom's antigens, but not transplant enough cells to cause GVH, and then follow it up in a short while with a proper transplant. But it all boils down to the math. And doing this procedure for the first time on a human patient. The overall chances for a cure for Renee are approximately equal one way or the other.
To do a transplant Renee would need the same amount of radiation to be administered as someone would have gotten 6oo yards from the bomb in Hiroshima. There are a lot of risks associated with that kind of treatment, including sterility etc.
Renee's slow recoveries of bone marrow from previous chemo treatments are not necessarily an issue. Again, an emergency T-cell depleted transplant from mom remains an option.
Another piece - not thought about much: some chronic leukemia patients have had significantly less chemo and the transplant takes. Could Renee get that? Depleted T-cell transplants don't take unless there is very low level of immune system. An undepleted T-cell transplant could be fatal.
3-year survival without re-occurance the survival rate goes way up!
If Renee had missing chromosomes or if her leukemic blasts had not disappeared after the first chemo, they would be much more concerned.
What are the chances of Karalee getting leukemia? Not high-- Karalee is to be tested when she gets in on Nov 14.
Renee is perfectly healthy at this point with no evidence of leukemia. If her counts are high enough on Monday, she will start another round of chemo. By the time these next 2 rounds of chemo are done, her counts are going to be low again and if she gets an infection, she would have to be hospitalized. That hospitalization could last for about 3 weeks, with another 3 weeks of recovery before they repeat the process all over again. That means we will be in and out of New York for another 4 - 5 months.
When I asked Dr Steinherz whether Renee could get the chemo in Winnipeg, he was quite emphatic. The kind of runaround we got for a unit of platelets in Winnipeg was not good care. And good care is what she will need to get her through the chemo treatments and subsequent infections. Any human being would give platelets without question when needed. How can the doctors in Winnipeg be so callous? So hung up with "proper procedures"?
Tuesday evening we were invited to Vic & Merle Huebner's place just north of NYC, for a delicious dinner at their home. Renee got to rent a few of Paul's movies. We were privileged to meet Anthony and Christine as well.
The trip back to Winnipeg on Wednesday was uneventful. The earlier trip from Toronto to NYC had an interesting sidenote. I got to sit next to Sam Rockwell, one of the stars in "The Assassination of Jessie James" movie that is being shot in Winnipeg this week. He autographed the Winnipeg Free Press page about the shoot for Karalee to treasure. Sam Rockwell has 48 movies with his name and his next movie is Snow Angels.
Teresa McMillan, is flying to NYC on Sunday to spend a week with Renee. Audrey from YWAM Vancouver is coming on Tuesday for a week. Alayna, Karalee, and I are flying out on Nov 11, the day after Alayna's 19th birthday. Alayna has to be back Monday and Karalee needs to be back Tuesday.
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