Big adventure of a little patient recovering after proton therapy, or a proton story of little fighter Dias from Kazakhstan

5-year-old Dias Muratov from Kazakhstan has finished therapy in the Proton Therapy Centre in Prague. The story of this brave little patient is no less interesting than the story of British patient Ashya King. The journey of little Dias to therapy in the Proton Therapy Centre in Prague was also adventurous, and after thirty radiation treatment days his parents, alike the Kings, hope that they will return to the Proton Therapy Centre in Prague next year to celebrate the treatment results as well. But let us come back to the beginning:

When the second son was born in the Murat family, they were happy. They were also proud, because the boy's development was good; when he was one, he talked, walked, and was lively and interested in everything. Nothing indicated any future problems. When he was three, his gait became unsteady, he had trouble keeping his balance and vomited in the morning. Magnetic resonance imaging confirmed a big brain tumor (7x6x5 cm). Craniopharyngioma is very rare and is diagnosed in just 2 of one million children. After the first shock, the parents started searching the possibilities for therapy, they contacted numerous specialists throughout the world, but due to complications, caused by water generated in the brain, travelling to distant places was impossible. At a prestigious clinic in Moscow, where they were able to travel, the boy underwent further examination, and to their surprise, the doctors' verdict was: No surgery. They thought that surgery would be too risky and were afraid that Dias' state of health would become even worse. Instead of surgery, they removed water accumulated around the tumor and decided to wait. Although the mum asked them many questions, the answer was just concise: "Go home, we will be in contact, the condition is not good enough for surgery at the present time."

At that time the boy was unable to walk, and the parents again took his medical records and sent them around the world. Scans and medical records were directed to prestigious health centers in Germany, Korea, Israel and Turkey. The parents were looking for a neurosurgeon who would be able to perform surgery on their son. Eventually, there remained 4 out of the 40 addressed, and the Murats decided for professor Shlomi Constantini, the president of the International Federation of Neuroendoscopy, a member of committees of world and European neurosurgical societies, and travelled to Israel to meet him. Professor Constantini, however, confirmed the views of the Moscow colleagues that surgery was impossible at that time. In the meantime, water started to generate in the brain again and needed to be removed. After this necessary medical intervention, the family travelled back home; the boy's tumor should have been checked by magnetic resonance imaging every three months and the results consulted with doctors in Israel. Everything continued well until one of the cysts around the tumor started to grow and press on the optic nerve. Scans, which were sent to Israel, persuaded the doctors that the situation needs to be resolved. The professor and his team decided to take out the cyst and to consider during the surgery whether to take part of the tumor out. This happened in the end, and at that time it was obvious that the next step after the surgery would be radiation.

Radiotherapy was mentioned first by the doctors in Moscow, and already at that time Mr. Muratov started gathering available information. Therefore he was prepared; he knew about gamma knife, about photon and proton therapies, as well as their comparison and advantages of proton therapy. But there is no proton centre in Israel. Therefore professor Constantini recommended standard photon therapy as the radiation method, he wanted to monitor the boy. The parents preferred proton therapy and asked whether it would be a problem if they found a possibility for this therapy in a different country. As the doctor would not be able to monitor little Dias directly, he told the parents that he did not like it very much, but surely knew the advantages of proton therapy and collaborated with American proton centers. But America was too far and travelling over the ocean would be dangerous for the little patient. So they browsed the Internet, and the answer to "proton therapy" was Prague. "When it appeared on the computer monitor and I could see the first pictures of treatment of children in the Proton Therapy Centre in Prague and read their stories, I knew I wanted to go to Prague" Dias' mother says. "We also saw the Korean Proton Therapy Centre, but the technology used in Prague was more advanced, and they had gained experience of treating children, and it was also closer to our home" she recollects her memories. "After discussion with professor Constantini, it was clear that Dias should undergo the proton therapy, ideally in Prague. And we immediately called them, sent medical records, and received a confirmation within a few hours that the diagnosis of our son was suitable for proton therapy, and they would admit him for treatment. The Proton Therapy Centre in Prague helped us a lot in official dealings, they also arranged admission to the University Hospital in Prague, but the originally planned date in August had to be put off", explains the mum. Some complications appeared in Dias and he had to undergo another surgery; the doctors monitored the boy and then the day came when it was decided that Dias could be transported to Prague.

The parents recollect their first moments in the Proton Therapy Centre as a real miracle.

"We will never forget the time when we entered the reception, everything was shining, we met smiling receptionists who spoke perfect English and Russian, a nurse took us to the consultation room where a doctor explained everything that was to be done, they then took the boys to the games room where they explained to Dias, using small toy figures, what was going to happen. He was still a bit afraid on the first day, but on the following days he ran to the lift looking forward to see the nurses, and mainly to the end of a radiation treatment session, and he wakes up and can play with toys again."

Dias underwent 30 radiation fractions, thirty anesthesias; and as the parents admitted, they were afraid at the beginning, but now, on the last day of therapy, they are happy, because their little hero underwent full therapy without problems. On the last day of therapy, little patients usually say goodbye to the Proton Therapy Centre, to the doctors and nurses, at a small celebration and beat a drum to start the way to a new life – Dias was looking forward to it all the time. He beat the drum vigorously, sang a song and gobbled up his favorite pizza; his parents took over the final report in the meantime. The doctors in Israel are waiting for it. They will continue the boy's treatment, and as professor Constantini has told the parents, he wanders how such a rare tumor will react to proton therapy, and if the therapy is successful, he will be pleased to send his patients to one of the best proton therapy centers in Europe.

The medical report from Prague will be sent to the Ministry of Health in Kazakhstan, who paid for boy's therapy. And the report is accompanied with the thanks of the parents. As the father had explained, the Ministry has a program under which it is possible to pay for treatment abroad that is not available in Kazakhstan to Kazakhstan nationals. And this was the case for little Kazakh Dias Muratov.

The Murat's departed Prague with tears in their eyes, if it were not for the diagnosis of their son, they would apparently ne unaware that were in a clinic. And the help and support of all of the people they met there contributed to the fact that their son successfully underwent therapy in Prague. And all of the people in the Proton Therapy Centre believe that the therapy will help Dias, and that he will come back to Prague in a year's time to celebrate his recovery. Till then they all keep their fingers crossed.

Pychaya Suksrinuch

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