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PATIENT STORIES

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.

 

Ashya's Story by Sky News VIDEO HERE

Gather information about the disease, join the social networks of patient groups going through the same problem and clarify your doubts with your doctors”, says the mother of the first child from Luxembourg treated by Proton Therapy in Prague.

Jay turned nine during his treatment at Proton Therapy Center Czech. He is a smart boy who speaks five languages and takes part in sports such as basketball, tennis and swimming. He's in his first year at music school and plays the euphonium.

“Jay is very active and always on the move," says his mother, Cristina, That might also be the reason why Jay copes incredibly well with his treatment. After complaining of headaches for several weeks, his father took him to a GP who suggested he might need glasses.

His mother tried to set up a meeting with several ophthalmologists. When she found one, it was thought initially that Jay might be suffering from hypermetropia (long sightedness). His mother insisted hypermetropia was not the problem because his headaches would have occurred not at the end of the day, but rather when he raised his head to look at the board at school or when he was lying in bed. “I felt something wasn't right”, she says.

The ophthalmologist looked again, took a picture of his eyes and found an ocular oedema. He told them not to wait too long before taking Jay to a paediatric neurologist‎. A month later Jay had an appointment with a neurologist who straight away sent him for a Magnetic Resonance Imaging (MRI) scan. The scan showed a tumour in the base of the skull. He was immediately sent to Germany for surgery. The histology tests confirmed it was a paediatric cancer called medulloblastoma.

The surgery lasted nearly five hours. At first Jay couldn't communicate his feelings and emotions but the physical recovery went very well and he was able to play football two weeks after the surgery! Nevertheless, another treatment was to come soon. “According to the protocol, surgery needs to be followed by radiotherapy. Doctors explained that Jay needed to undergo 30 sessions of photon therapy, but never mentioned the possibility of proton therapy instead.” When I said that we wanted Jay to have proton therapy instead of the photon therapy, the radiologists brushed me off, saying: "We cannot help you then. You are on your own.” The oncologists then explained that we needed to act fast; Jay needed to begin his therapy ideally 28 days after surgery and not later than 40 days.

“So we decided to take care of it ourselves”, said Cristina. “We got in touch with several centres in Europe and did our own research. One week after, the German oncologists were helping us find proton therapy in Germany, but it was too late for the treatment to start within the 28 days. There was a Facebook group called Parents of Children with Medulloblastoma which has been a great source of information for us. I found out about the Czech Proton Therapy Center when writing the keywords ‘proton therapy Europe’ on Google. You were absolutely the quickest to reply and I found the communication with your center comfortable from the very beginning. Lucie was always there to answer to our questions and to understand that Jay's treatment had to start very quickly. After providing the medical reports and receiving treatment approval, the National Health Insurance System of Luxembourg approved the reimbursement of proton therapy within a couple of days."

"It's not easy to come to a country where we don't speak the language and start a treatment that we have no control over," says Jay's mother, "but the proton therapy went very smoothly. The staff was incredibly patient, attentive to Jay's fears and able to give him confidence when he most needed it. A particular thanks to Dr Ondrová who was always available to answer my never-ending questions and make my opinion count. When he is done with the proton therapy, Jay studies, goes shopping with us, plays football and Frisbee in the park and still attends his tennis course when he returns home at the weekend."

Now, the second part of Jay's treatment is almost complete and he is looking forward to going back to school and returning to all his after-school activities. In seven weeks’ time, Jay will have to start chemotherapy, and will probably return to Germany to continue the treatment.

PTC Czech wishes a speedy recovery to Jay and good luck with his school marks!

 

„You have to fight“, says the mother of a four year old Adrian, a Polish boy who finished proton therapy in Prague 



Watch a video from the end of the treatment celebration by CLICKING THE PICTURE!

Adrian (4) lives in London with his mother and her partner. They moved here shortly after he was born. “The reason for moving was simple – there is much more work opportunities in London and better money. We are happier in London”, explains Adrian’s mother Emilia. The most of the last year, we spent in the British hospitals.

After he was diagnosed with a rare atypical rhabdoid tumour in of the posterior brain, Adrian had to undergo surgery and later 6 cycles of chemotherapy. “Our doctor in Great Ormond Hospital in London recommended conventional radiotherapy as the last step in treatment. At that time, our friends‘child was treated with the similar type of tumour. It was them who told me about this magic treatment by protons. I found some information in Polish and also found your Polish website. At that time, I made the decision for my son myself“, says Emilia.

Without hesitating, Emilia contacted the Polish representative of PTC Czech in Poland – Marta Bogusz. ”My first question was how much would it cost. “ The doctor said that it would cost 100% more in the United States plus there was also the factor of time so Emilia focused on the European centers. “You in Prague were the first who replied!” she says.

There still was the question of financing the treatment. “We did not have much time…” explains Emilia. That was why she launched a Facebook website called “Razem wyleczymy Adrianka” to collect money on his treatment in Prague. At that time, the story of Adrian started reminding the story of Ashya King, whose family was in the media every day last year. “We are very happy that this worked out and of course we are grateful to everybody who contributed on Adrian’s treatment.”

Adrian, Emilia and her boyfriend Robert flew to Poland and then drove to Prague for the first consultation before the Easter Weekend. “This was untypical Easter for us”, says Emilia. They waited one week until the treatment plan was ready and Adrian started the 30 session’s treatment.

“Despite being very worried, we all feel very well here. We have a strong trust in your center and doctors. I just cannot wait to go home to Poland now and relax for a week”, she concludes. “I would like to encourage the other families with children patients to be strong most importantly – fight for your child!”.
Treatment of the first Polish child is over but there are many more who might need proton therapy. PTC is here to help all other Polish families in the same situation.

'Proton therapy can save Ashya King - it saved our son from same brain tumor'

Doctors warned the parents of Miki Roth, Jakub and Karolina, there was just a 40% chance of survival and bleakly told them to prepare for the worst. The parents of a boy who had proton therapy for a brain tumour at the same clinic where Ashya King hopes to be treated have told it saved his life.
Miki Roth, 11, was diagnosed with the same killer ¬medulloblastoma tumour as five-year-old Ashya when he was nine. Doctors warned dad Jakub and mum Karolina there was just a 40% chance of survival and bleakly told them to prepare for the worst. But the pair were determined not to lose him and online research led them to the Proton Therapy Centre in Prague, Czech Republic.

Miki had a six-week course of proton therapy, which targets the tumour but leaves surrounding tissues undamaged – and within a year he was cancer free. Mum-of-six Karolina, 36, from Prague , said: “I totally understand what Ashya’s family are going through and it breaks my heart to see what is happening to them.

"We did the same research they did and were lucky enough to have Miki treated at the PTC, which is in our home city. The people work miracles. They saved our son’s life and I’m sure they can do the same for little Ashya. The proton therapy does not have any of the nasty side effects that radiotherapy can have.
Miki has gone from a very sick little boy to being a clever schoolboy who can do everything his friends can do. Without the proton therapy and the staff at PTC I don’t think he would be here today. The clinic is so child-friendly, which was very important to us".
 



"We could bring our five other children and not be worried about them being scared or upset.”
Bank worker Jakub added: “It doesn’t feel like a hospital, which is so good for kids. There are -playrooms and toys everywhere. “When Miki was receiving the proton beam he lay completely still and we were able to talk to him over an intercom and play his favourite CDs. "The only side effects he had was a slight sunburn from the beam and also a little bit of tiredness. We would spend around two hours at the centre every weekday for six weeks. It was so different from being hospitalised.”

Karolina wept as she told how Miki was diagnosed after he started having problems with his co-ordination. She said: “He was a really good piano player but suddenly started playing really badly.
"He was also clumsy. Tests confirmed a tumour. We were devastated. Our world fell apart.
It was pressing on his brain, so they had to operate immediately to save his life. We were then left with two options, conventional radiotherapy or more specialised proton therapy. Friends in London had sent their son for proton treatment in America, so we did some research and found the PTC.”

After the treatment finished, Miki had 12 months of chemotherapy at a nearby state hospital.
And in March his parents were told by doctors the tumour had gone. Karolina said: “It was the best news we could have hoped for. The cancer could return and we will always have that worry, but now Miki is like any other young boy. "Every time I see him smile I want to cry tears of joy.” Miki added: “I now go to school like everybody else again.”

Speaking about the Kings, arrested in Madrid as they were trying to get to Prague, Karolina said: “They are desperate to receive the proton therapy. "Our son is proof it works, I hope they have the same outcome we did.”

Read the full article at Mirro.co.uk HERE.


“I know it will never come back” says mother of Matej, a five year old treated by proton therapy


Martina and Pavel Novak did not have to argue their case for proton beam therapy too long. Matej (who has a twin brother, Marek) was diagnosed with a rare form of head and neck cancer last spring.
Swollen glands and a high temperature that didn’t respond to intravenous antibiotics were investigated, and following a biopsy a six-centimetre tumour uncovered in his neck. Not long afterwards, an MRI showed that the cancer was spreading – behind his eyes and nose, and into his brain.

“It was a horrible feeling,” says Martina. “We were told the cancer was very aggressive, hugely malignant and hardly curable. It was olfactory neuroblastoma – very rare. So we were sent to the Motol University Hospital in Prague, which specialises in paediatric oncology.”

At first, the Novaks accepted the advice of their doctors, and Matej was started on eight 10-day cycles of chemotherapy. “He handled it well,” says his mother. The medical team had planned to follow the chemotherapy with surgery to remove what was left of the tumour, and then conventional radiotherapy to destroy any remaining malignant tissue. But by then the Novaks were carrying out their own research.
When the chemo ended, an MRI scan showed that the tumour had been destroyed, and there was no need for surgery. The Novaks asked for proton beam therapy instead of conventional radiotherapy. “We knew it would be safer and gentler, and we insisted.” Initially sceptical, their doctors agreed to approve the therapy as long as the family’s insurance company paid the bill, which it agreed to do.
Even if it had refused, Martina is adamant that the money would have been found for treatment. “We planned to sell our house; our car; start a public appeal. We would have done anything.”
Three weeks later, in December last year, Matej began the first of 32 sessions, each of which lasted no more than five minutes. He was given additional chemotherapy, and by January 20, his proton beam therapy was over.

Subsequent MRI scans in March and June have shown no sign of recurrence, and his prognosis is promising. “It must carry on like this,” says Martina. “I know it will never come back.”
She and Pavel are “very happy; there couldn’t be a better result. The boys are back to normal, playing and fighting with each other.”

To the Kings, she sends this message: “Don’t give up; fight; believe. I would do exactly the same as you did. Keep trying, persist, have courage – and it will work out.”

Read the full article from The Telegraph HERE.

A long way to cure

The beat of a drum once again symbolises the end of treatment for 10 year old Tom*. He has completed proton therapy treatment for medulloblastoma, a malignant brain tumour. This type of cancer is particularly suitable for proton therapy because radiation must be given near sensitive areas of the body - the brain and spinal cord.

Proton radiation is much more accurate and safer than other cancer treatment options - the tumour can be treated without damaging surrounding tissues of the body. He attended the Proton Therapy Center in Prague for a total of 30 treatments. He celebrated the end of his treatment last Friday with his family, doctors and staff from the Proton Therapy Center, and is looking forward to returning to school after he completes his final course of chemotherapy.

*Name changed

Source: Proton Therapy Center, June 2013

This experience made me stronger

14-year-old Diana was diagnosed with mediastinum, a tumour off middle chest. It was a rather solid tumour only treatable with a high dose of radiation. Conventional radiotherapy was not necessary due to dose tolerance of the surrounding healthy tissue of the heart or lung.

Diana started with chemoteraphy followed with conventional radiotherapy, however, it was not possible to give a suffucient dose without damaging the healthy tissue around the tumour. At that time, PTC Czech was already accepting paediatric patients for treatment in gantry treatment room.

Diana had found PTC Czech herself on the internet. After one month waiting for her insurance company to give a final statement on reimbursement of the treatment, the center decided to accept her free of charge. She felt great after each treatment visit, did not have any breathing and swallowing problems as after of conventional radiotherapy. She only had a little problem with eating average food since her chemoteraphy course.

She was very satisfied with the care she was given and wants to visit the center even later, to say hello to her doctor. „I won’t be the same person as before. This experience makes you stronger,“ Diana adds.

Source: Proton Therapy Center, May 2013  


First Slovakian Girl Receiving Life-Saving Proton Therapy

Little Veronika is the first patient in Slovakia to receive proton therapy for for an orbital tumour (behind her eye). 7-year old Veronika underwent treatment at the proton therapy center in Prague for a period of five weeks. Her treatment was covered by the Slovakian government's general health insurance program.

Being a safer and more accurate form of cancer treatment, proton therapy allowed the doctors in Prague to more effectively protect sensitive structures in Veronika's affected eye socket during
treatment, namely - the retina, optic nerve, and the lacrimal gland that produces tears, as well as protecting surrounding sensitive brain tissue.

"Veronika tolerated the treatment extremely very well. During proton treatment she also received a course of chemotherapy, which she tolerated superbly." Said Dr. Branislav "Brano" Sepeši, paediatric radiation oncologist at Proton Therapy Center Prague.

So what's next for Veronika?
Veronika has returned home to Slovakia, and has once again commenced her schooling. She will return to the care of her treating paediatric oncologist and may likely receive follow-up chemotherapy, as a preventive measure following her successful proton treatment in Prague.

Surrounded by caring family and staff members, Veronika closed her time at PTC by playing a magical Professor Proton drum! This announced the end of Veronika's successful proton therapy treatment.

Source: Proton Therapy Center, June 2013

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