August 7: Shifra battle through remissions although not really succeed.
Read through the end of this post updated information dated August 18, 2001
Marina gave me the following about Shifra told:
Wednesday, July 19 and Cor Marina are in the Sophia Hospital in Rotterdam for a second opinion and advice on how to proceed now. They had previously made a afsrpaak Dr. RP, but this conversation was a big disappointment. According to Marina this doctor was definitely not open to their questions. Dr. P. Cor said that Sophia and Marina hospital was in contact with all major hospitals in the world and if he did not know then nobody knew it. Marina quotes: "You'll have to accept that your daughter dying of leukemia. Shifra a situation like I get at least 1x per year in my practice, it is not so unique (editors note: strange that all other treating physicians and Marina Cor say that the situation around Shifra really unique and they have never seen a child after a few relapses of ALL is still in remission, but doctors apparently has other information. We are curious why this is not publicity comes, but we look further out) and searching the web makes no sense whatsoever. You'd better enjoy your life a little and accept that Shifra die very soon ". Thus, according to Dr. Marina P.
Marina and Cor tell me pretty emotionally touched by this conversation. Marina: "This man had absolutely no listening ear, and if we had known we were not to Rotterdam. Why can not a doctor just to tell over the phone that he can do nothing more for us?"
Marina and Cor have then decided to do just one week to go on holiday and with a good friend and her children are ten days to Tenerife for a holiday with the family. And they have a great time. And on return found Shifra's blood counts have improved again. Although now, some two weeks later have fallen. It remains a bit of change and Marina tells me that she is afraid that it is no longer feasible Shifra one month or longer to get into remission. If that were to happen, she might still qualify for an immune therapy or vaccination with B-43 treatment. (See eg your story with Robin now in America for such treatment)
Yesterday, Shifra an extra dose vinchristine received and in response she had today (7-8) high fever. However they still take all the supplements and I hope this treatment works, where they are now a number of times (7x) in remission of it has come again. Marina also said that although the remission time is getting shorter and Shifra so fierce that it responds to the chemo is very thick and now much fever. So it's all very worrying. We keep you informed via this page.
dated August 18: Marina last week, and Cor have close contact with the hospital in Minneapolis where Robin has been the past two months (see story Robin on your page story) . The treating physician there (Robin) has promised that he uses the latest information about Shifra's condition will give an opinion or participate Shifra can do in a trial with B-43. This will require Shifra first went to America to a bone marrow test, but when then green light comes Shifra would be eligible for treatment with the B-43, which Robin also probably going to start in October. According to Marina continues Shifra's physical and emotional condition is quite stable and Shifra still a cheerful and energetic impression. But it remains very worrying, because blood levels do not really improve.
