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We are parents of Levon Karagezyan, and we really need help. Our son is 17, and he is only starting to live. This year he graduated from high school and was planning his future, when a terrible disease, heart sarcoma, changed his and our lives.
Our son is very kind, honest and fair boy. Since he was a child, he took boxing lessons. During a medical examination in 2002, he was found to have an arrhythmia.
We live in Moscow, and like all parents we wish the best for our children. For four years, Levon was treated by the best doctors in Moscow. In December 2005, he had a heart operation. It seemed that everything went well, and our son is finally healthy. Unfortunately, it was too early to celebrate. A month later, in January 2006 Levon had an inflammation of pericardium. He was hospitalized again. And at the end of April 2006 Levon was found to have a tumor in his heart. His doctors thought it was a hematoma that formed after his operation in December.
On May 18th, Levon was operated again at Russian Scientific Surgery Center of Russian Medical Academy. The operation was not free, even though we are residents of Moscow. That day we heard the bad news that Levon had cancer. The doctors could not remove the tumor, and they were only able to do a biopsy.
We went to the best specialists of Moscow, but were told that the operation was impossible. Nobody wanted to take the responsibility.
We were told to stop torturing ourselves and our son, and just let our boy enjoy his life while he can. Unfortunately, our son could not enjoy his life any longer. His tumor grew enormously in two months and was pushing on his lung. Our son could barely breathe or walk.
We sent inquiries to many hospitals around the world, but the only response came from Germany. However, they asked for a huge amount of money (250,000 euros), which we were unable to collect in the short period of time.
At the last moment, a cardiosurgeon from Children's Hospital No.1, V. G. Lyubomudrov, invited us to come to St .Petersburg. On June 14th he performed a unique operation and removed a tumor the size of baseball from Levon's heart. It gave us hope that we can find cure for our son.
Considering that Levon was in his early post-operation period, he was transferred to pediatric oncology unit of hospital No. 31 in St. Petersburg to kill the rest of cancerous cells.
We can't find the words to express our gratitude to V.G. Lyubomudrov, the person who saved our son's life. He gave us hope that Levon will get better.
However, our problem is that we are not residents of St. Petersburg, and we have to pay full price for Levon's treatment. The stays at the hospital, examinations and therapy have to be paid for by us.
We had small savings, but they are about to run out. We had to pay for examinations and cardiograms at the hospital No.1, and chemotherapy and hospital stay at hospital No.31 (close to 80,000 rubles) and this is far from the end of it. Nobody knows what medications our son will need in the future. The treatment is very expensive and lengthy. It will take at least 9-12 months.
Our family income is not very big. After Levon's diagnosis, I had to leave work to take care of our son. My husband is a manager at the foreign company where he makes approximately $600 a month. We also have a daughter, who is 19. She studies at the college and we pay for her tuition.
We are in a desperate situation, but our son's life is most important for us. It is hard to think that my son can die because we do not have the money to pay for his treatment. We are doing all we can, but we cannot overcome this on our own.
We are pleading for your help! Please help our son live!

P.S. After Levon's mother wrote this letter, we were notified that Kind Heart Fund of newspaper AiF gave 200,000 rubles for Levon's treatment. However, Levon's family still needs help with living expenses and supporting medications, and possible additional medical expenses.

Lubov and Spartak Karazezyan
Contact phone: +7 (951) 659-5303

Flyer in Armenian
(please feel free to distribute it online and offline, if you would like to help Levon)

Levon's medical history

Update as of September 21, 2006. Based on computer tomography results, Levon has positive changes. He will continue chemotherapy.

Update as of October 30, 2006. Levon is receiving chemotherapy, and is feeling relatively well. His family still needs a lot of help with paying for his diet, supporting medications and examinations.

Update as of November 17, 2006. We would like to thank Elena Aleksandrovna, Nikolai, Kamo and Irina for their invaluable help. We are also especially grateful to Kind Heart fund of AiF newspaper and Margarita Shirokova personally.
Levon's mother

Update as of November 21, 2006. Based on clarified histology results, Levon's tumor contains cells that are resistant to chemotherapy. An operation to remove the rest of the tumor is being discussed.
Levon's family still needs financial support for the medications and examinations. After the chemotherapy and before the operation, Levon will need PET scan, the cost of which may reach 20,000 rubles.

Update as of November 22, 2006. The decision about an operation for Levon needs to be made very soon, and his PET scan is scheduled for the beginning of next week. Levon urgently needs 20,000 rubles!

Update as of December 28, 2006. Levon was allowed to go home for two weeks while he is recovering between chemotherapy blocks. The decision about successive operation will be made upon completion of chemotherapy.

Update as of January 22, 2007. In the next few days, Levon will undergo two operations to remove the remaining lesions in his lungs. On January 24th, his right lung will be operated, and on January 26th – his left. Levon’s family needs help with paying for current medications!
Tomorrow is Levon's birthday. He is turning 18.

Update as of February 1, 2007. After additional test, another CT scan and numerous consultations with specialists, Levon's operations on his lungs were canceled. It appears that lesions in his lungs are not metastases but rather fibrous changes that do not require intervention. The plan for his further treatment is being clarified.

Update as of February 28, 2007. Currently we are waiting for a response from a clinic in Germany to see whether they agree to operate Levon and remove the rest of the tumor on his heart. Levon and his mom need help with paying for apartment rent until further treatment strategy is determined.

Update as of March 18, 2007. On March 22, Levon needs to have an MRI of his heart. The cost of this test is 12,000 rubles. Please help Levon!

Update as of March 22, 2007. After many consultations and additional examinations the cardiologists and oncologists of a clinic in Munster, Germany, came to conclusion that the operation on Levon's heart to remove the rest of the tumor is technically possible. Tomorrow we expect to receive more information regarding the operation.

Update as of March 25, 2007. Both Russian and German doctors believe that Levon needs to be operated as soon as possible. Next Monday, we should receive a bill from the university clinic in Munster, which will be published on our web site. The preliminary cost of the operation and subsequent rehabilitation (approximately 30 days) is 40,000 euros. Levon will be operated by professor Shelt. After the operation, it will be decided whether post-operation chemotherapy is necessary. If it is necessary, Levon will receive it in the hospital No.31 in St. Petersburg.
Today Levon will leave hospital No.31 and go to Moscow. We urgently need to help Levon raise the money.
Levon and his parents are sincerely grateful to everyone who helped them during their stay in St. Petersburg: the doctors, nurses, donors and volunteers! They would like to especially thank Vadim Lyubomudrov and Vladimir Balsunovsky, Levon’s doctors at the Chidlren's hospital No.1, and Lyudmila Shats and Margarita Belogurova from hospital No.31. Thank you very much for helping save Levon's life!

Update as of March 30, 2007. AdVita fund, Levon and his parents are sincerely grateful to Victoria Reznikova whose extraordinary efforts allowed obtaining a complete bill from the university clinic in Munster within a day, reaching an agreement that Levon will be prepared for an operation immediately after arriving to clinic on Monday and that his mom will be provided with lodging, and speeding up visa applications.
We are also very grateful to Captain Nemo for agreeing to urgently pay a bill for Levon's treatment.

Updated as of April 2, 2007. Today Levon had a pre-operation examination at the university clinic in Munster. The operation is scheduled for April 4th.

Updated as of April 4, 2007. The operation lasted over 10 hours and was successful. Levon's tumor was completely removed. We would like to thank everyone for supporting Levon!

Update as of April 5, 2007. Levon woke up and he already talks. He was taken off the artificial lung ventilation to be transferred from the operating room to intensive care room.

Update as of April 12, 2007. Levon was transferred from intensive care unit into a regular room. He feels well.

Update as of April 18, 2007. Levon was allowed to go for walks. He feels relatively well.

Update as of April 26, 2007. Based on the results of the latest examinations, Levon has completely recovered. He and his mom are planning to go home on May 2nd. After his return, Levon will receive a few more chemotherapy courses to prevent a relapse. He will receive therapy at the hospital No.31.

Update as of May 9, 2007. Levon returned to St. Petersburg to continue his treatment. The new chemotherapy protocol will be established after the consultation with the German specialists who operated Levon and oncologists from the hospital No.31 who administered his chemotherapy. It will likely be supporting chemotherapy once every two weeks for 26 weeks. All this time Levon will be an outpatient.
Levon and his family are sincerely grateful to AiF-Kind Heart fund that issued a payment guarantee for the chemotherapy at the hospital No.31 for 100,000 rubles. This should be enough to cover the full treatment.
Levon will also need to rent an apartment near the clinic. The apartment rent is 15,000 rubles a month.

Update as of May 12, 2007. After the consultation of German and Russian specialists, the chemotherapy scheme was established. At first, Levon will undergo three high-dosage chemotherapy blocks, and then receive supporting chemotherapy. Levon had already completed the necessary testing before the chemotherapy.

Update as of May 28, 2007. Levon completed the first chemotherapy block. We are enormously grateful to Doc, Yana, Anna and another Anna for helping with Levon's apartment rent for June! Levon is now at home and he will return to the hospital at the end of the week.

Update as of June 9, 2007. The ultrasound showed that Levon has blood clots and he has problem with blood supply of one of his lungs. Levon is receiving appropriate treatment. The specialists in vascular surgery did not recommend an operation based on examination results. Other specialists are now involved in consultations regarding Levon's treatment.

Update as of July 23, 2007. Levon urgently needs 3 bottles of Antithrombin (1 gram), which cost 17,000 rubles a bottle.

Update as of July 30, 2007. Antithrombin for Levon was purchased from donations received by our fund. He started chemotherapy as scheduled, and feels relatively well. Based on the test results, the blood supply of his lung had improved.

Update as of July 31, 2007. After the chemotherapy, Levon's blood test results worsened. Therefore, Antithrombin dosage was changed. Levon now needs 3 bottles of 1,000 ME a week. A bottle of the drug costs 16,150 rubles. Altogether, Levon needs 20 more bottles.

Medical Report

Update as of August 14, 2007. Based on the control testing results, blood supply to Levon's lungs is gradually recovering. He continues to be injected with three bottles of Antithrombin a week. We are sincerely grateful to Levon's anonymous supporter who donated 145,450 rubles, which allowed us to buy 3-week supply of the medication. Levon now has enough Antithrombin until the beginning of September.
According to Levon's doctors, Antithrombin will be needed for 3-4 more months, until Levon completes chemotherapy.
We are enormously grateful to everyone who is helping Levon continue his treatment. On August 24, he will undergo control CT scan and PET scan.

Update as of August 19, 2007. Levon needs LMW (low molecular weight) Heparin and unfractioned Heparin (coatest), or anti-factor Xa + or livil anti Xa, with control plasma to continue treatment of his thrombosis. We were unable to locate this drug in Russia, Finland or Germany. Please help us locate this medication. Levon feels relatively well.

Update as of October 22, 2007. Levon is continuing planned chemotherapy, which constantly causes decreases of Antithrombin counts in his blood. For that reason, he still needs to continue injections of Antithrombin and Heparin. Based on the control testing, the blood supply to his lungs had recovered completely.

Update as of November 11, 2007. Levon was referred for PET scan with CT scan, which will be performed at the beginning of next week. It will cost approximately 20,000 rubles. Based on the test results, further treatment will be determined.

Update as of December 23, 2007. Based on the test results, Levon has areas that accumulate contrast agent. The doctors are now selecting a therapy for Levon. He feels well, the blood supply to his lungs is normal and his heart works well.

Update as of December 30, 2007. Levon was discharged from the clinic for the outpatient monitoring. His doctors are continuing consultations regarding his further treatment.

Update as of January 31, 2008. I would like to thank everyone who has been helping and continues to help me during my treatment. I admire people who offer a helping hand to a stranger. This is the first time I say thank you, but I always feel very grateful. Thank you, everyone!
Levon

Update as of February 9, 2008. Levon will undergo chemotherapy with an experimental drug that is not registered in Russia under one of the European research programs. If Levon is not deterred by a cold, which he recently had, the course will start on February 11th.

Update as of February 12, 2008. Today Levon completed the first of six chemotherapy blocks, and on Friday he will have a blood test so that his doctors can evaluate the initial results.

Update as of February 27, 2008. Levon suffers from severe stomatitis. The chemotherapy is being postponed.

Update as of March 6, 2008. Levon is feeling better. The lesions from stomatitis are slowly healing. He even gained some weight. Levon was allowed to go home until next Tuesday when he will start the next chemotherapy course.

Update as of March 26, 2008. Based on the planned MRI results, Levon's tumor shrank by more than 25%. He is continuing therapy under experimental protocol.

Update as of March 31, 2008. Levon is starting another chemotherapy block tomorrow. The CT scan showed no worsening of the situation, while MRI showed decrease in the tumor size. In about a month, Levon will have combined PET and CT, as these tests will most accurately show the results of chemotherapy.

Update as of May 25, 2008. The control CT scan and MRI showed that Levon's condition is unchanged. He continues chemotherapy under experimental protocol. Levon feels relatively well and is studying for enrollment in college.

Update as of July 28, 2008. Levon successfully passed the entrance exams and was accepted by Psychology department of Pediatric Academy. He still receives weekly chemotherapy. The MRI results show no negative dynamic.

Update as of July 31, 2008. We are enormously grateful to Doc for helping Levon with paying apartment rent!

Update as of September 23, 2008. In a month the doctors plan Levon to have MRI, which should show the results of the last chemotherapy course.
In between the chemotherapy courses, Levon is very involved in his studies. He notes that he has to memorize many things (names of the muscles, tissues, etc). This is not surprising, because Levon studies at Pediatric Academy.

Update as of November 7, 2008. Levon's condition improved and he was discharged. The PET scan results show that the remaining tumor has not changed in size.

Update as of November 19, 2008. Levon completed another one-day chemotherapy round, after which he went to college right away. He has a normal life of a freshman in the college: lectures, practice sessions, homework and walks… Except, at nights he goes to sleep.

Update as of January 16, 2009. Levon's examination showed lack of negative dynamic in his tumor growth.

Update as of July 20, 2010. At the planned examination, it was noted that the tumor has grown again somewhat. Levon started therapy with Campto. Based on PET results after two cycles of chemotherapy, the tumor responded to therapy.

Update as of September 22, 2010. Levon completed four cycles of treatment with Campto, and two more are planned. He is hospitalized at Municipal hospital No.31 with fever and low pressure. Due to suspected sepsis, he is treated with Pentaglobin and Fortum. Test results are not ready yet.

Update as of November 24, 2010. Levon underwent a full course of chemotherapy, but the test did not show improvement. The radio-surgery to remove the tumor is being discussed; Levon is invited to Harley Street Clinic in London for a face-to face consultation.

Update as of December 9, 2010. Based on preliminary tests, there are no contraindications to cyber-knife surgery. However, the final decision will be made at the doctors' council on December 16th. Levon is undergoing additional tests and consultations.

Update as of December 22, 2010. Preliminary estimate for Levon's treatment is 42,690 British pounds. The amount includes possible treatment of complications, so the final amount may be lower. Since the surgery could not be postponed any longer, the clinic took Levon for treatment without prepayment, based on AdVita fund guarantee.
On Tuesday, Levon had the first stage of treatment: implantation of metal indicators in the tumor tissue that will serve as orientation for cyber-knife. Levon is now in intensive care unit, and is planned to stay in the clinic for 2-3 days. He feels rather well and has a stable pulse. The doctors will monitor the indicators for about a week, and if they do not move, in early January Levon will undergo cyber-knife surgery.
We are opening urgent fundraising campaign for Levon. He has been on treatment for 4.5 years, and during that time he underwent two highly complex surgeries on his heart, dozens of chemotherapy cycles, and he will now become the second patient in the world to undergo a cyber-knife surgery on his heart.
We are very grateful to The Harley Street Clinic specialists for agreeing to undertake this surgery. As of today, this is the only chance for Levon to overcome his disease.

Update as of January 17, 2011. The first session of cyber-knife surgery went without complications. In total, five sessions are planned. Levon feels well.

Update as of January 31, 2011. Levon's treatment in London is completed. Radiation with cyber-knife went well, without complications. Levon underwent all planned treatment.
Since response will be available for evaluation only in a month-six weeks, it is planned that during that time Levon will be in St. Petersburg under monitoring of oncologists and radiologists. Planned PET is scheduled in six to eight weeks.
We are sincerely grateful to everyone who helped Levon and transferred money for his treatment. We are very grateful to Dr. Plauman, radiosurgeon who operated on Levon and all the clinic personnel.
We would also like to thank Karina Solloway for her efforts to organize Levon's treatment and lodging. Without her, it would have been impossible to deal with all the challenges.
A final bill from the clinic will be received in a few days. Currently, the clinic received the first installment of 6,000 GBP (this money was raised in Levon's father's account and donated to AdVita fund). Raisa Gorbacheva fund in London plans to donate additional 30,000 GBP. After the final bill, it will be more clear how much money still needs to be raised.
Levon feels well and today he resumed his studies at Pediatric Academy.
Foto of Levon with Dr. Plauman.

Update as of March 28, 2011. Levon's tests - PET and MRI - are scheduled for March 30.

Update as of July 12, 2011. Levon urgently needs a medication from London! This is a package of pills, anti-arrhythmia medication, which finally helped stabilize Levon's heart. It is not available in Russia.
If you plan to fly from London and would like to help Levon, please email Lena Gratcheva at lenagr@mail.ru. We will give you contact information in London where the medication can be picked up.

Update as of August 2, 2011. Follow-up PET showed that the tumor has decreased 1.5 times and the contrast accumulation intensity is now twice lower too. These results have been discussed with the doctors of City Hospital 31 as well as with Dr. Plaumann. The general opinion is that it is a late response to radiation therapy. Follow-up PET is to be conducted in two months. A couple of days ago Levon had a fever and was urgently hospitalized. Ultrasound revealed a focus with fluid in his liver. The puncture showed that it was a hematoma which appeared because Levon is constantly on anticoagulants. Therapy has been administered. The hematoma is decreasing in size. Levon is feeling fine.
Many thanks to Karina Solloway for buying the antiarrhythmic drug and to Dmitry for bringing it to St. Petersburg!

Update as of January 8, 2012. Unfortunately, planned tests discovered a relapse. Levon is now undergoing evaluation at The Harley Street Clinic in London. Treatment plan will be prepared in the next few days.

Update as of January 12, 2012. It was decided to administer 6 cycles of chemotherapy with trabectedin. Yesterday Levon had the first infusion.

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