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Diary

 

25.01.2011. 

Dear friends! Some time ago we decided to change our child’s name. Now her OFFICIAL name is Nadya and she has a new birth certificate issued on 30.06.2009. Thus, all the documents stored on this web-site dated later 30.06.2009. are issued to Nadya.

Thanks to everyone who is with us!

Yours faithfully, Alexander.

 

20.01.2011. 

Dear all,

those who remember us, grieve for us and those who came to our web-page at the first time! 

We came home after we passed examinations in Izrael and get recommendations from Izrael doctors. 

Shortly after that, a strongest hydrocephaly has started. Nadya couldn’t lie in bed and walked hardly. The situation required an immediate shunting. During the surgery our baby had an apparent death. And again we nearly lost our baby. It took several long minutes to resuscitate her. Kindest regards to the doctors!  

Then there was a rather quite period of time and Nadya quite adapted to her state.

Now she walk herself along the wall, likes to play, listen to the fairy-tales, build houses from the blocks, make glass beads and likes to listen to the music very much. Especially Mozart. Her dream is to learn to play a violin.

On the studies with a typhlotutor (a teacher who teaches blind), we started to study the Braille language. We wrote letters in dots and dreamed of learning to read soon. 

Unfortunately, happiness, in which we spent 2 incomplete years, came to the end in October. The MRI results turned us back to the condition we had 4 years ago, when we discovered a tumor at the first time.It grew again as if it has not been treated at all. Now it is hen-egg sized and we urgently have to do something with it, until the essential functions of the brain haven’t started to suffer. 

At present, the question of treatment tactics is to be decided. The opinions of different specialists are differ: some says it is necessary to carry out another surgery, others says that chemotherapy should be conducted but with the use of other medicines, not that were used to Nadya at the beginning of the treatment.

There is also an opinion that protonotheraphy should help to a child.We continue to collect doctor’s opinions from America, Germany and Izrael. And then we have to make an important decision on what method of treatment should be better for us.

At the moment, Nadya’s state is normal. She has a good mood, and of course she doesn’t suspect on what is coming to her again.She carefree plays, rejoices to New Year and always asks when we will go to music lessons again. We have started to visit music lessons and the teacher says that the girl is simply born for music.

Pray for us, hold fists, wish good luck. It is very important for us.

Thanks to everyone who is with us!

Yours faithfully, Alexander.

 

31.10.2008.

We have passed all planned specialists. Including the first time at the endocrinologist who was very surprised that a child over a year and a half receiving chemotherapy, has never been sent to the consultation to a specialist.

As the children receiving such a serious treatment, should be obligatory monitored the level of hormones. Not checking the hormones, it is possible to miss any of them, and get very serious problem. For example, the problems associated with girl’s puberty which may eventually affect her childbearing functions, mental development, growth (the child may simply stop to grow), etc. Moreover, after an operation Zlata has got a great course of hormones. Unfortunately, we did not know about that. We plan to visit endocrinologist every next 6 months.

We did MRI. There was performed directly mask anaesthesia directly at the MRI room. The child fall asleep quietly, and already sleeping she got the peripheral (venous anaesthesia) into her arm. When Zlata woke up, she had not even realized that she had something in her arm. Everything was done with the maximum humanity to the child. After a while, until Zlata deviated from the anesthesia, we were given a disc with our MRI-pictures. In the clinic they do not print on the film for a long time. As the film picture is plane and, consequently, less informative, they write the MRI-image on the CD-disk in a special 3-D format. Thus, the tumor can be seen and rotated in a different (many!) projections. This, of course, provides more opportunities for its study. Description they used to give in a few days, but all the images are already stored in a common clinic base and any doctor can easily see the images directly from his/her office by opening the computer on the desk. You do not have to carry disks with you.

After receiving all of the doctor’s opinions we came to professor Sh.Constantini. Pre-examined our situation and looking at all the results obtained in Israel, we have the answer. The operation, carried out in Russia, in such amount WAS NOT NEEDED. Already starting from January 2008 on our MRI images can be seen the prevalent development of cysts tumors, but not the substantial progress of the tumor as it is. In other words, when Zlata has become worse and she was dieing, there was not tumor pressing, but the fluid inside the cysts. In this case, the child should have been easy to put drainage and remove excess fluid! And so, there would not be performed so great damage to the optic nervous, and Zlata could continue to see. The opinion of Professor Constantini completely coincided with the response we received a few days ago from Vyurtsburgskoy clinics in Germany. There, we advise our problem with Professor Rudkovski and also a number of specialists. Answer was the same - should been put the drainage.

Accordingly, at the moment, the re-operation is out of the question, because reintervention into the area bordering the hypophysis, may result in a new series of poorly solvable problems associated no longer with the eyes, but with the development of the child.

Radiation therapy, in our case, drops away due to the close to the hypophysis, and Zlata is too small now. Safe age for the irradiation of that field of brain is 12 years! Chemotherapy does not kill our tumor, and while formation is static there is no reason to perform chemotherapy. This would only damage child's body, which is already sufficiently overchemistried. While the formation in the brains is not growing we do nothing. If the cyst will grow again, we put drainage! But if there will be marked the tumor growth, then more precise operation should be performed, which, as we were told we can expect in Suraski. This is followed by chemotherapy, and only if the chemistry did not help - radiation. In general, it must be clearly understand what is increasing: tumor or cyst. And choose the correct method of treatment. And this is turned out not to be done everywhere.

Professor Constantini told us that if nothing happens, then in maximum of 6 months, we must go through a full survey again, in order to have a correct understanding of the status of Zlata. Thus, our further life will depend on these results.

Thank you to everyone who have not stayed on the side and helped us perform this high-quality survey. It is very sad that already lost Zlata’s eyesight, we were able to learn the actual state of affairs. The life of our child depended on this survey. As in Russia, we were offered to get regular course of chemotherapy, which, according to Israeli and German specialists, in this case was absolutely not necessary for us.

For now we have only one thing to do is to restore Zlata’s sight, lost in Russia. But, unfortunately, we understand that if a miracle will happen, and she will start to see even anything, alas, the sight level will not come up to that was before Zlata’s «treatment» ... We pray God that we could be able to return Zlata’s sight even for a little, at least one eye, at least a bit! Now at the beginning we have to perform few ophthalmologic examinations, which will show what else could be done in our situation. In parallel, we are searching for the ophthalmologic centers that can help our misfortune. We would be very grateful to everyone who can give us information about such centers engaged in the treatment of optic nerve atrophy at children with cancer. We continue to believe and hope that somewhere we could get help to restore Zlata’s eyesight.

With respect and great appreciate to everyone,
All the Chernoknizhny family.