Hello dear brothers and sisters!
My name is Ryamzia and I am a mother to a sick child. We came to Hematology and Transplantology Institute for further treatment from Penza Region. My son Ramil is 19. He got sick when he was 13. And now we have been fighting for his life for 6 years already. His diagnosis is acute non-lymphoblastic leukemia, M2 version. He has already had a bone marrow homogenous transplantation from partially matched unrelated donor. Now he has Legg-Calve-Perthes disease on his left leg, invasive lung aspergillosis infection, EBV virus and extensive skin GVHD.
During summer 2003 Ramil has started to complain about stomach pain and about getting tired all the time. He'd lost his appetite and started to lose weight. Ramil was brought up to be very modest and religious. He went to school and did different kinds of sports. Teachers were always happy about his behavior at school.
City hospital doctor sent us to fiberoptic gastrodoudenoscopy. During this procedure 2 duodenal ulcers were discovered. Our doctor was very surprised. He said that this is the first time during his working practice that he has seen this kind of case. Next day I have asked to send us to Penza Regional Hospital. We had all the analysis done there and the doctor said: "The child's spleen, liver and lymph nodes are enlarged and the blood test results are very bad". We were hospitalized straight away and I was told that my son has acute leukemia. But the also gave me hope by saying that if my son was treated in Moscow he would have a chance to get well. It was a shock for everyone in our family. I was praying to Allah for us not to be rejected in Moscow.
We waited for 2 weeks for the answer and during this time we had constant platelet transfusions. Finally on the 3rd of August 2003 we went to Moscow to Russian Children's Clinical Hospital. They have confirmed Ramil's diagnosis. He had started chemotherapy. His ulcer was treated at the same time. All chemotherapy courses were very harsh on Ramil. He had constant fever, his blood pressure was dropping all the time, he felt sick, his hair and eyelashes started to fall out. We endured everything and Ramil entered remission. We were treated in Moscow for the whole year and then were released to go home. We went to regular check-ups. We were in remission for 1.5 years.
But then Ramil relapsed and we went to Moscow again. The doctors said that this time Ramil needs to have bone marrow transplantation and that there is very small chance to find a donor for him. Ramil's sister did not match as a donor. He started anti-relapse chemotherapy and had 4 blocks done. After 3 months, they have found a partially matching unrelated donor. Ramil had transplantation on the 28th of April 2006. Our donor was a 38 years old woman from Germany. We stayed in glass isolation ward of BMT unit for 6 months. After 11 days Ramil had GVHD and this when the most difficult things have started. Ramil's skin peeled off twice and Ramil was in severe pain. Doctors were fighting for him very hard. Ramil received an enormous amount of hormones shots and it caused his calve-perthes disease on his left leg bone and invasive aspergillosis lung infection. He was in a wheelchair for a year because he could not walk. In the future we need to decide on hip-joints replacement.
Due to Ramil's age, he was discharged from hospital in Moscow and referred to St. Petersburg for further treatment. It has been almost three years since bone marrow transplantation but Ramil's body still can not fully recover. He constantly needs to take expensive medicine and immunoglobulin because his immune system is very weak. He also needs to take Vfend and Valtrex medicine to treat his aspergillosis. We need to have a flat rented for us because we do not have money to buy or rent a flat ourselves. We live in a village where there are no jobs. I don't work because I am staying with my son all the time. Ramil's father earns around 7,000 - 9,000 rubles a month by doing temporary jobs. We also have another child - our daughter goes to 9th grade. Please help my son. Give him hope for his stoic fight for his life. He really wants to live and to study. We will be really grateful to those who will help us.

Ryamzia, Ramil's mother
Contact phone number:
+7 (927) 364-40-12

Epicrisis: page 1, page 2, page 3

Update as of May 12, 2009. Ramil was hospitalized at BMT clinic. He was found to have lung aspergillosis and he needs therapy with Vfend.

Update as of June 3, 2009. Ramil completed a course of chemotherapy and was transferred to outpatient monitoring. He still needs Vfend.

Update as of June 23, 2009. Ramil completed a course of treatment and was allowed to go home.

Update as of July 20, 2010. Ramil came to Pediatric Hematology & Transplantology Institute for GVHD treatment with photopheresis. He already underwent five sessions, and will need seven more. Ramil feels better already, but treatment will be lengthy. Unfortunately, he was diagnosed with aspergillosis infection in his lungs during the tests, and he was prescribed Vfend.

Update as of July 30, 2010. Ramil has stage III skin GVHD. He underwent six courses of plasmapheresis and has one last one left to go. He also developed necrosis of hip and shoulder joints. Ramil was prescribed Zometa and Miacalcin. Ramil lost weight and has not been able to gain it back.
Ramil's mother

Update as of October 5, 2010. Ramil arrived for further treatment and testing. He underwent 8 photopheresis sessions. He needs to go to 4 more sessions. Ramil constantly needs Vfend, as he suffers from lung aspergillosis and has not improved. He also has aseptic necrosis of hip joints, and recently developed necrosis of shoulder joints. Ramil needs therapy with Zometa and calcium pills.

Update as of December 24, 2010. Ramil is now at home and feels well. In January he would continue planned photopheresis because this treatment is very effective. He still needs Vfend.

Update as of January 19, 2011. Ramil came to St. Petersburg for a planned course of photopheresis. He feels rather well and goes for physical therapy.
Ramil's mom

Update as of February 1, 2011. Ramil completed planned course of photopheresis with improvement in his condition. Due to his low weight, Ramil was prescribed special nutrition: Nutrizone and Nutridrink.
Based on CT scan results, despite some improvement aspergillosis lesions remain, and Vfend is still needed. The next course of photopheresis is scheduled for February 20.
Ramil's mom

Update as of February 28, 2011. Ramil arrived for another cycle of photopheresis. He feels rather well. He still needs Zometa, Miacalcin and Vfend.
Ramil's mom

Update as of March 12, 2011. Ramil completed another cycle of photopheresis and went home until early April when he will come back to continue therapy. He still needs Zometa, Miacalcin and Vfend.
Ramil's mother

Update as of May 4, 2011. Ramil has come for another photopheresis course. He has already had 16 courses, and positive dynamics are vivid. But Ramil constantly needs Zometa, Fosamax, Miacalcic and Vfend. In the future my son will have a surgery to replace his joint. In general he feels ok.
Ramil's mother

Update as of July 17, 2011. Ramil feels rather well, but has issues with walking. At the end of July he will travel for another photopheresis session, and he still needs Vfend.
Ramil's mother

Update as of August 24, 2011. Ramil traveled for another cycle of photopheresis and evaluation. Thanks to photopheresis he has improvement of skin and mucous tissues. He still takes Vfend and calcium supplements. The next cycle of photopheresis is scheduled for September.
Ramil's mom

Update as of October 30, 2011. Ramil came in for planned hospitalization for 9th cycle of photopheresis. He is in remission and his blood counts are normal. He still needs to take Vfend and calcium medications: zometa, miacalcic and fosamax. He feels rather well.
Ramil's mom

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