27 sept. 2001: Still hope for Shifra
dated September 27, 2001: the already incredible story of Shifra is now quite a story where a lot of question marks have been set up, but also and most importantly a glimmer of hope again.
What has happened in recent weeks:
now again four weeks ago, told the attending physician in Leiden, on the day he went on vacation two weeks that he would take leave of Shifra because he did not think he would see her again. The situation was so bad he says that death is only a matter of a few days would be. Marina and Cor also told me that she worried too big and prepared for the worst. With the help of some people going around calling Marina again if there is not anywhere in the world a glimmer of hope might be. The clinic in Portland, where Robin ( see your story of Robin ) was an immunotherapy, Shifra refused a chance based on the fact that her condition had relapsed had shown too much. The doctor there did not even examine her. Unbelievable really for the very many recurrences are in my eyes Shifra just perfect for immunotherapy because it seems the only way to get definitive cure. She will always be in remission, but every time, the leukemia returned. And it's evident that a genafwijking / damage it causes. But unfortunately I'm not a doctor and even sent in a videotape could not convince the doctor.
Via Marina came over and Cor contact a Dutch professor in Utrecht, which now appears many years doing trials with immunotherapy in collaboration with a Canadian / American company. There's even a Phase III trial, which means that if the trial confirmed the earlier promising results and this method can then be used in the regular treatment of leukemia. It also showed that the attending physicians in Leiden knew this for years but have withheld for Marina and Cor because Leyden professor who felt that their eyes close commercial ties with the company executive would have. I will not write what I thought and said when I heard this, but here we go do something with it. But never mind. Through this professor was also contact Prof. Marina Marina Pinedo, which referred to Professor Veerman (see page cancers leukemia for information about the workgroup childhood leukemia, which the professor is the director). This professor Veerman said he may still possible to Shifra saw her in a trial in England or Denmark to do it. And last week it became clear that Shifra still a big chance for mid / late October to go to England for an immune therapy called "Anti-CD19". A brief explanation of a layman like me, research has shown that many of Shifra leukemia is caused by damage to the genes CD 19 and CD 22. Now there is a Phase III trial already "anti-CD 22", but the doctors thought it would be better served Shifra an immune therapy "Anti-CD19". And this will hopefully happen now.
Shifra past week had a blood transfusion because her new drum angry too low and since a few weeks, ever since the time the doctor predicted that it would take only a few days getting Shifra 2 mg. Dexamethasone per day, 2 mg. Vincristine and next week's full range of supplements, a new supplement: orthidetox. This drug is described as a whey protein powder enriched with lactoferrin, colostrum (first milk), amino acids and minerals. This drug would have the same effect could have like Transfer Factor Plus (who is interested I have one article about it, but only in America to obtain and expensive) and provides an internal cleaning and restoring the natural intestinal flora, but appears above the resistance increase.
Shifra is currently doing well. occasionally she will be a day to school, but she does have much experience of it that they are so thick. The dexamethasone causes them to become very bloated. Moreover, they seem much bone and one or more vertebrae to be subsiding. So it is all still very worrisome, but what hope is doing life and I must say Marina and Cor, as well Shifra sound on the phone again energized and hopeful.
October 9 Shifra is 11 years and she lives all the way towards the celebration of it. Before then, it will not go to England and who Shifra a ticket for her birthday to send can do to:
Shifra Stam, Flood Dike 31, 8261 GC Camps
I think they did really like it. We will keep you informed on this point how it will go to Shifra.
