Katya Larionova is 4, and already spent half of her life in the hospitals. Katya has a stage IV neuroblastoma. Since she could not get treatment in Ukraine, Katya and her mom traveled to Singapore, where Katya received a bone marrow transplant and achieved remission. However, neuroblastoma is a difficult type of cancer to treat, and up to 50% of patients relapse. Katya’s treating doctor recommended anti-relapse therapy with monoclonal antibodies that is currently available only in the U.S. The cost of this experimental treatment is $350,000.
December 10, 2009: “Hello! I would like to share our good news. In November, Katya underwent the first full examination after the treatment for neuroblastoma and autologous BMT. We went to Singapore, to Katya’s treating doctor, for tests. He tested Katya and was happy to tell us results: the tests showed that she was in complete remission! Based on the blood test, it is now evident that the bone marrow engrafted. Even when it works at some 60%, it already does a good job producing erythorocytes, leukocytes and platelets. Katya’s hemoglobin count is not very good, so from time to time she receives blood transfusions. Once the bone marrow starts fully working, the transfusions will not longer be needed.
The whole body PET imaging showed that Katya has lesions in her liver, but they are inactive. These metastases were impossible to remove during surgery, so the doctor decided to destroy them with chemotherapy. We believe that they will never reactivate!
The next full examination is planned for the end of February - beginning of March. We are still hoping that Katya will be able to receive anti-relapse therapy, since she is at high risk for recurrence. We are trying hard to find the money and not waste precious time! We are very thankful to everyone who supports us and donates money for Katyusha! Thank you for your care!”
Alina, Katya’s mom
March 12, 2010: Katya was examined in Singapore. She is confirmed to be in remission! We are continuing raising funds for anti-relapse therapy. The children with stage IV neuroblastoma (Katya’s diagnosis) who undergo this procedure double their survival chances.
March 27, 2010: “Hello! I’d like to share our latest news about Katya’s health. In the beginning of March Katya went for a checkup in a clinic in Singapore. The day after our arrival, she had whole-body PET imaging. The results were good. After comparing images to the previous ones, her doctor concluded that there are no changes, and Katya’s body is cancer-free! The blood tests are also good. The doctor did not offer bone marrow biopsy because he felt extra procedures are unnecessary if there are no indicators of a relapse. So Katya’s remission is confirmed and we can now breathe easier. The next checkup is scheduled for the end of June - beginning of July. During the consultation, the doctor noted that Katya grew taller, became stronger and can now walk and run with confidence. She did not have tests for growth hormone and thyroid, because Katya grew taller, even if not much. Katya was happy to see the doctor and the nurse who always comes along with the doctor and who put Katya on IV lines. During our visit, the doctor gave Katya lots of little presents, which a little kid cannot refuse: kinder-surprises, chupa-chups, bubbles, crayons and a drawing pad, stickers with Mickey Mouse and princesses… Katya put all the treasures in her bag and was really happy! She is always the first to run to see doctor Lee because she knows she will not leave empty handed.
Doctor Lee said that the next time he will perform various tests, including PET and a biopsy, so that we know what to expect.
Katya is now at home already. She tolerated the long flights and time changes very well, although at times she would get tired and ask to carry her. Now she is already adapted again to the time change and enjoys seeing her girlfriends in the neighborhood.
We are continuing raising funds for anti-relapse therapy at Memorial Sloan Kettering Cancer Clinic in New York. According to clinic’s data, those children with stage IV neuroblastoma who undergo this procedure significantly increase their survival chances!
We have one last leap to the full recovery! We are asking all caring people to help us raise the money! Katyusha can be a healthy girl, but we, adults, need to help her!”
Alina, Katya’s mom
May 15, 2010: The Russian America newspaper has published article about Katya.
May 27, 2010: At the end of June, Katya will travel to Singapore for another check-up. It will be a year since she underwent transplantation, so a series of tests will be performed.
July 12, 2010: Katya returned from Singapore. She is in remission!
Dec 13, 2010: At the end of November, Katya had a planned checkup in Singapore. She had various blood tests and PET/CT scan. She is cancer-free!
The blood tests are almost all normal, except for thyroid function tests, so Katya was prescribed hormonal therapy. After PET we started preparing for the complex surgery to straighten Katya’s leg (she previously had a metastasis in the bone), but during the consultation the doctor said that he would like to postpone surgery as he wants to make sure that remission lasts and does not want to touch the bone yet. Katya falls frequently due to her leg being crooked, and she may develop issues with her joints at any time.
The next full examination is scheduled for May 2011. Katya will not only have PET and blood tests, but also bone marrow biopsy, and a surgery on her leg. Please help Katya’s parents with raising money for examination and surgery.
Jan 27, 2011: Unfortunately, Katya had a relapse in her skull bones and soft tissue. She needs to travel for treatment abroad again, as anti-relapse therapy is not offered in Ukraine. Katya will travel to a clinic in London for anti-relapse therapy. The bill from the clinic is high - 87,000 GBP, but other clinics’ estimates were even larger. Doctor Lee who treated Katya in Singapore approved this approach that will include chemotherapy and MIBG therapy. Katyusha does not know yet that she has a very difficult treatment ahead that she has to tolerate, endure and win. But I know that I will help and together we will overcome cancer and it will leave her llife forever!
Katya’s mom
February 2, 2011: Hello! We have good news. We raised the amount necessary for the first payment to the Greifswald clinic in Germany! EIN HERZ FUR KINDER fund donated 20,000 euros for Katyusha’s treatment. We now have money for the first stage of treatment.
After the first bill is paid, the clinic will issue the bill for the second stage of therapy: treatment with ch14.18 antibody.
The cost of this therapy is estimated at 85,000 euros, but the exact amount will be known once we get the bill.
Katyusha already knows that she will soon fly on a plane to a far destination, to see a nice doctor. She does not know yet that she will lose her hair and she will feel unwell… The disease robbed Katya of happy and careless childhood. So we have to restart the fight and overcome it once and for all!
I’d like to thank you very much on behalf of Katya and our whole family.
Thank you for your kindness towards someone else’s sick child! For refusing something for yourself and helping Katya raise money for treatment, for saving her life and giving her a ticket to a happy childhood without tears and pain. And without cancer…
Alina, Katya’s mom
Update as of May 12, 2011: Katya is continuing therapy with ch14.18 antibodies - she is now in third cycle. In about two weeks she will undergo complete evaluation of response to therapy. A tumor biopsy showed that it has a mixture of malignant and benign cells and it is n-myc negative. Based on results of evaluation, further therapy will be discussed.
Update as of May 31, 2011: Katya completed three cycles of therapy with Ch14.18 antibodies and will start the 4th cycle on Monday. Next week, results of tests to evaluate Katya’s response to therapy will be ready.
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In mid-December 2009, 18-month old Anna Vaprova was diagnosed with a malignant teratoma, an extremely rare type of cancerous tumor. Even though it grows very fast and metastasizes, it is considered curative, with proper and timely treatment. Since her diagnosis, Anna has endured more than most people will in a lifetime: countless hospitalizations, 10 rounds of aggressive chemotherapy, surgery to remove the tumor along with her tailbone, and numerous invasive tests. All in 12 agonizingly stressful months.
Now the cancer is back, but Russian doctors can’t pinpoint its location. The need is urgent. The cancer MUST be located immediately for the correct treatment to begin, or it might be too late. Doctors are encouraging the parents to seek more accurate diagnostics and treatment abroad. The Chaim Sheba Medical Center in Israel is ready to accept her as a patient. Of course, as foreign nationals, the family won’t qualify for any kind of insurance in Israel.
We need to raise $10,000 for initial diagnostics and consultations with the doctors, and $50,000 for possible treatment to be received in Israel in order to help save Anna’s life. Please help Anna’s family to continue their fight. To learn more about Anna’s story, please visit her web site at www.vaprov.ru.
March 23, 2011: Anna and her parents found a hospital in Dusseldorf, Germany, where Anna is offered hyperthermic chemotherapy and possibly surgery. Today they flew out of Moscow and Anna will start treatment shortly.
March 25, 2011: Anna started first cycle today. Altogether, four cycles are planned.
May 31, 2011: Anna will have a surgery tomorrow. Based on results of tests, further treatment will be decided upon.
August 31, 2011: Anna will have to have an MRI for her doctors to look at the result of just-finished radiation treatments. They said that the MRI will need to be done in 6 weeks from now. In the meantime, she’ll be going in for weekly port flushing, as well as AFP blood tests.
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Vlad Kurus from Ukraine is 9 years old. He was diagnosed with aplastic anemia, condition when bone marrow does not produce sufficient blood cells. For the past 9 months, Vladik has been relying on donated blood, receiving infusions every week. He underwent series of alternative therapy, including courses of immunoglobulin and immunosuppressive. Due to the regular blood infusions, Vladik has been taking Desferal to remove excess iron and Granocyte to stimulate hematogenesis. The bone marrow transplantation remains recommended as Vladik’s parents will not be able to keep up with expensive drugs for a long period of time.
Vladik is a very creative boy. He spends hours drawing comics, creating mazes and towns, and writing stories. Some of his drawings and stories were published in Russian and Ukrainian magazines for kids. Please give this talented boy a chance to live!
May 19, 2010: Vladik had puncture on May 16th. Although his condition has not changed dramatically (Vladik is still dependent on blood injections and needs a donor once a week), the doctors detected a small amount of growing young cells. It is very important to stimulate growth of these cells now, both leukocytes and erythrocytes, so Vladik will continue taking Eprex and Granocyte to stimulate hematogenesis.
June 14, 2010: Vladik continues treatment with Sandimmun Neoral. After injections of trombocite concentrate, Vladik was temporarily discharged from the hospital for his 10th birthday - Happy Birthday Vladik!
July 16, 2010: The dosage of Sandimmun Neoral was increased to keep up with Vladik’s body growth. The doctors continue monitoring of blood counts. Results of immunosuppressive therapy will be assessed in August.
August 31, 2010: Unfortunately, Vladik ran into some serious complications, e.g. citomegalovirus infection which urgently required immunoglobulin injection. Thanks to the efforts of volunteers and clinic personnel, the immunoglobulin was found.
September 23, 2010: Vladik’s condition has slightly improved. He does not need as many blood transfusions as in the past. Sandimmun Neoral remains the main medication.
October 13, 2010: An article about Vladik was published in Argumenty i Fakty newspaper [Rus].
December 6, 2010: Vladik’s condition worsened. He is receiving platelet transfusions at the hospital and intravenous injections of Cymevene. After that, he will be switched to Valcyte. Bone marrow transplant is now considered a necessity, therefore, treatment abroad is required as unrelated bone marrow transplantations are not performed in Ukraine. Vladik’s family will be grateful for any help.
Please help us spread the word about Vladik: download and share his flyers between your friends:
February 15, 2011: Thanks to Lifeline Fund, Vladik received an opportunity to be evaluated for bone marrow transplantation in Italy. His family sent blood samples for testing. Vladik is still receiving regular blood transfusions.
March 8, 2011: Today Vladik and his mom flew to Italy for further treatment and transplantation.
April 7, 2011: The results of tests performed in Italy confirmed original diagnosis. A donor search was initiated. Vladik’s condition is under control. He is receiving appropriate therapy.
May 29, 2011: Vladik underwent the 3rd cycle of chemotherapy and is now recovering. A donor search is underway.
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Kirill Vazhenin is 19 years old. In June 2003 he started complaining of chest pains and got fever. However, until October of that year, Kirill’s only therapy was antibiotics, despite progressively worsening condition. Then he finally had an x-ray that showed a large tumor in his mediastenum. Kirill was diagnosed with t-cell lymphoblastic lymphoma.
Afterwards, Kirill had chemotherapy, radiation, and surgery. However, in January 2006 he had a relapse. He received bone marrow transplant from an unrelated donor, but just seven months later, a second relapse occurred. Kirill had more chemotherapy and achieved remission. Again, it was short-lived, and in November 2007 relapse #3 was diagnosed. In 2008 Kirill traveled to Germany for surgery and further treatment. Unfortunately, in May 2010 he was diagnosed with the 4th relapse. At the end of June, Kirill and his mother will travel to Italy for a clinical trial with radioimmunotherapy (targeted therapy with radioactive antibodies). This trial worked very well for two of Hodgkin’s lymphoma patients, and we are hoping it will help Kirill get well too. Please support Kirill in his fight against cancer!
July 12, 2010: Kirill and his mother arrived in Napoli, Italy at the end of June. However, Kirill had issues with his liver and had to undergo biopsy. His liver condition is now improving, and he is planned to undergo a test injection of the drug next Monday, July 19.
July 19, 2010: Kirill will need to be hospitalized for two weeks for treatment of GVHD in his liver and skin.
September 1, 2010: Kirill completed five cycles of immunosuppressive therapy and he has three more cycles to go. It means Kirill will stay in Italy for at least two more months. He is still planned to participate in the clinical trial with radioimmunotherapy.
- Marina
October 2, 2010: Kirill was considered ineligible for the radioimmunotherapy trial. However, the clinic will continue his treatment at Hematology Unit, which may take many more months.
December 16, 2010: Article about Kirill was published in Argumenty i Fakty newspaper [Rus].
December 24, 2010: Kirill finished three chemotherapy cycles and will soon undergo evaluation.
January 27, 2011: Kirill finished fourth cycle, but has slight issues with lungs and breathing due to long-term effects of chemotherapy.
March 4, 2011: Kirill takes Revlimid. He will have another evaluation at the end of March.
April 15, 2011: Based on test results, Kirill had a good response to therapy and will soon be able to return home to St. Petersburg. Kirill will need to travel to Napoli every three months for evaluations and Revlimid therapy.
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Irina Gavrisheva was growing up just like other kids until the age of 10. At 11, a simple surgery triggered a serious neuromuscular disease, myasthenia gravis. This autoimmune disorder causes progressive muscular fatigue. Within two years, Irina became unable to walk, and a year later, stopped breathing. Next, her heart stopped beating.
The two following years were an unending nightmare: long stays in intensive care, coma, artificial lung ventilation. Although Irina survived, she had to stay in a wheelchair for the rest of her life. But that was not the worst of her problems. Irina was diagnosed with invasive thymoma, a rare mediastinal tumor. It was considered inoperable and the only recommendation was a palliative therapy. Irina however refused to give up on herself: she fought for her right to lead a normal life. She became a volunteer and later a Board member of a charitable fund.
And then her life was put on hold by her disease once again: Irina’s joints started to degenerate. She underwent seven operations on one of her knee joints - without success. Her last hope was a visit to the University Clinic in Regensburg, Germany. It was quite a shock to discover that thymoma diagnosis was wrong! It meant Irina had a hope and could be treated. The second shock was that she needed a series of surgeries to replace her damaged joints. In July 2008, Irina had the first surgery on joints, and in April 2009 - the second. The last shock had to do with the reason for the bone degeneration: it was caused by a genetic mutation that led to excessive blood clotting interfering with supply of blood to organs and tissues, and their eventual demise. In September 2009, there was another unpleasant discovery - a rare form of arrhythmia due to a genetic heart defect. It meant Irina’s heart could stop at any moment.
Just ten years ago, Irina would be out of luck. Now, she has a risky but viable option: experimental open heart surgery to implant a defibrillator to help her heart re-start working if it stops. The cost of the operation is 18,000 euros. It is needed urgently - the surgery is scheduled for November 20.
November 14, 2009: We transferred $2,000 for Irina’s surgery. In addition, an anonymous donor agreed to foot the bill for Irina’s surgery and other treatment.
November 25, 2009: Irina underwent a successful surgery, and she is now recovering.
January 6, 2010: We are restarting fundraising for Irina. She has a serious post-operative complication, a pleurisy. We urgently need to raise 5,000 euros.
January 20, 2010: Latest news about Irina can be found in her friend’ s Live Journal.
January 27, 2010: “G-envelope” in St. Petersburg was able to collect 31,200 rubles (about $1,000) for Irina.
February 22, 2010: Irina is already at home. All the bills from the clinic were paid for. Unfortunately, she is still fighting post-operative complications. Irina is continuing therapy with antibiotics and other medications. Her pacemaker is working well.
May 27, 2010: Irina came to a clinic in Halle, Germany. The examination of her pacemaker revealed that one of the electrodes was infected. This caused the post-surgery complications Irina has been fighting. The electrode will have to be removed, cleared of infection and installed back. We are now waiting for bill estimates.
June 5, 2010: Unfortunately, Irina developed a pulmonary hemorrhage. The procedure on replacement of infected electrode and antibiotic treatment will require at least 15,000 Euro. Irina needs urgent help!
July 14, 2010: Irina was operated and the infected electrode was removed without damage to the lung. Irina spent 6 days in intensive care but now she feels better.
September 7, 2010: Irina had another surgery to install a new electrode to the pacemaker. It went well.
December 9, 2010: Based on test results, Irina has an opening in the heart that did not heal after surgery. She needs new operation to fix this defect.
January 7, 2011: Irina needs an occluder to be installd to close aneurisma. If done on a beating heart, it would require additional 1,615 euros to be raised. However, if her heart will need to be stopped during surgery, she would need additional 10,000 euros. Please help Irina!
January 31, 2011: Irina underwent surgery in Germany. The surgery required her heart to be stopped for 102 minutes and was successful. Irina is now recovering.
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Nadezhda Chernoknizhnaya is 4 years old. In 2008, when she was just 8 months, she was diagnosed with juvenile pilocytic astrocytoma (tumor of optic nerve).
Nadya spent 1.5 years in the hospital in St. Petersburg going through rounds of chemotherapy. Once it was stopped, the tumor growth resumed. Nadya needed emergency surgery to survive. The operation lasted 7 hours. More than a half of the tumor was removed. But the tumor infiltrated the optic nerves and the chiasm so that both eyes were affected. After surgery, Nadya lost her sight.
Now she needs to continue treatment to remove the tumor as it has been growing again and causing fatigue and pain in her eyes. After reviewing Nadezhda’s medical records, the surgeons in Johns Hopkins Hospital agreed to perform the surgery. Nadya’s family has to raise $90,000 to cover the cost of it. Additional funds will be needed for chemotherapy or radiation following the tumor debulking. To learn more about Nadya, please visit her site www.zlata.1gb.ru/eng. Please help save Nadya.
March 31, 2011: Nadya’s parents raised funds necessary for surgery and chemotherapy! Nadya and her mom and dad arrived to Baltimore today.
May 29, 2011: Nadya had chemotherapy for a month, and CT scan showed that her tumor has not decreased, but has not grown either. It was decided to continue with chemotherapy and re-evaluate Nadya in late summer.
June 23, 2011: Nadya’s shunt got blocked and she developed hydrocephaly. She underwent urgent surgery to replace the shunt and drain the fluid. She is now recovering at the hospital and chemotherapy will be postponed by 2 weeks.
September 7, 2011: Nadya underwent MRI that showed the tumor is stable, and it also started developing necrotic lesions. In other words, medication that Nadya takes is working and tumor is responding to it and slowly dying. For now, the percentage of necrotic cells is small but the most important thing is that Nadya is responding. The study results were discussed at a group meeting and the doctors agreed that therapy should be continued.
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Natasha Kudryavtseva was 10 when she first got sick with acute promyelocytic leukemia. Her treatment was not completed, and a year later her father died. In one more year, her mother lost her parental rights, and Natasha ended up in an orphanage. In 2007, Natasha had a relapse of her disease. Fortunately, while at the hospital Natasha met her future adoptive mother who took care of her and together they won over Natasha’s disease. However, recent tests discovered a genetic mutation which will inevitably lead to a relapse, so Natasha needs to start treatment urgently. The medication that can save Natasha is called Trisenox and is not registered in Russia. She needs to travel to Germany where such treatment is possible, but will cost 113,000 euros. Please help Natasha get her health back!
Jan 1, 2011: Natasha has a fundraising site and was also filmed for Russian TV news.
April 1, 2011: Natasha was examined in Munich and test results did not confirm relapse. Natasha will continue monthly blood tests.
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Levon Karagezian has a very rare disease. In 2006 he started having arrhythmia and shortness of breath. After several rounds of tests, a tumor was found near his heart. There is no standard of treatment for this extremely rare tumor - sarcoma of heart. He had surgery and chemotherapy, but a residual tumor remained. Levon had to have more surgeries and more chemotherapy… Meanwhile, he was living his life: he enrolled to study Psychology at Pediatric Academy, met a girl and worked with kids who were treated in the same unit to make their experiences more positive and memorable.
Recently, Levon had a disease progression. He was taken in by The Harley Street Clinic in London for a unique gamma-knife operation, only a second in the world. Please help Levon with paying his bill estimated at 42,000 GBP.
February 5, 2011: Levon has completed his treatment in London. Gamma-knife operation was successful with no complications. Levon received all planned treatment protocol. Effectiveness of therapy can be evaluated in 1-2 months. Levon feels well and has already begun attending classes at the institute.
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Olga Shmygleva is 24 years old. Since she was 19 and a second year student at a college, she has been fighting Hodgkin’s disease. Unfortunately, it has been recurring ever since, despite numerous chemotherapy protocols and bone marrow transplantation of Olga’s own stem cells, which she had in July of 2009. In October 2009, it was determined that transplantation was not effective and the tumor continued growing.
At this time, Olga is looking for a clinical trial that could accept her. She will most likely travel abroad once a good match is found.
March 19, 2010: Olga received an invitation for a clinical trial from Italy.
March 25, 2010: Olga is expected to arrive to the clinic on April 12.
April 13, 2010: Olga’s flight went well. She was met at the airport. On Monday she was hospitalized. She had a blood test and was installed a catheter. Today Olga had PET imaging, and another study is scheduled for Friday. She practically has to use sign language to communicate as there is no translator at the hospital.
April 27, 2010: Olga received therapeutic injections, as the initial diagnostic injection was well distributed in the body. If all goes well, Olga will be able to fly home on May 2. She will then return to Italy for follow-up tests in 40 days.
May 28, 2010: Olga returned home in early May. She now goes for weekly blood tests to monitor for possible toxicity. Yesterday she had the first CT scan since the therapeutic injection, and the results are very good! Only two enlarged lymph nodes still remain.
June 3, 2010: An article about Olga was published by the Russian America and Argumenty i Fakty.
June 10, 2010: We are happy to report that based on control scans, Olga is now disease-free! She was the first patient on the trial with such a good result.
September 21, 2010: Unfortunately, Olya’s disease is progressing again. She needs to return to Italy for a second injection in October. Please help Olya with paying for her travel expenses (roundtrip to Italy costs close to $1,000).
October 8, 2010: Olya will return to the clinic in early November after undergoing bone marrow tests at home.
Dec 12, 2010: Olga underwent a second injection of radioimmunotherapy drug in Italy. She feels well and hopes for a good result.
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Elena Puchkova is a young woman from Belarus. In June 2008, she was diagnosed with stage III stomach cancer. After having her stomach removed and undergoing 6 cycles of chemotherapy, Elena was cancer free. Unfortunately, in just a few months, she was diagnosed with a relapse. She had more surgery and thermal chemotherapy in Minsk. However, this time her doctors only considered therapy as palliative, giving her no hope for living longer than a year. Elena has two children: a 16-year old daughter and a 6-year old son. She could not get resigned to the idea of not being around to see them grow. Elena started to look for treatment options in other countries. With help of US-based Harmony Life fund, Elena was able to go for treatment in Israel. In total, she is planned to undergo six cycles of chemotherapy with Erbitux. The cost of treatment will be $35,000. At this time, Elena only has enough money for one cycle of chemotherapy. Please help Elena receive the life-saving treatment she needs!
July 18, 2010: After the first cycles of chemotherapy, Elena’s oncomarkers (tumor markers) are 3 times lower - which means Erbitux works! Her next visit to the hospital is scheduled for the end of July.
Sept 20, 2010: Elena reported that Erbitux was approved in Belarus, and it is now available to her for free in her home country. She no longer needs to travel to Israel for treatment!
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Nilufari Sharifbek is 17. She traveled from Tajikistan after being diagnosed with Ewing sarcoma. She needed an operation to replace her collarbone that was damaged by cancer, but the waiting list in Tajikistan was too long, and she was recommended to come to St. Petersburg, Russia. Nilufari’s family has four children. One of her brothers was born with chest deformities and is now disabled. Nilufari is billed full cost of treatment, and she will also undergo bone marrrow transplantation that will cost $25,000. Her family urgently needs support with paying for medical care and their living expenses in St. Petersburg. Please help Nilufari - she has a good prognosis, and your donation can truly make a difference!
August 4, 2009: Transplantation was postponed. Nilufari needs surgery to remove a part of her collarbone. Nilufari’s family needs help with paying apartment rent in St. Petersburg.
September 8, 2009: Nilufari was hospitalized for bone marrow transplantation.
October 2, 2009: Autotransplantation went as planned. Nilufari is now in 21st day and her leukocyte counts are recovering slowly. Nilufari suffered from severe mucositis when her tongue bled and she could not eat. She now feels better. Nilufari’s family still needs financial support. Her father cannot work at this time, as he has to stay with his daughter at the hospital.
October 26, 2009: Nilufari completely recovered after transplantation and was discharged from the clinic to be monitored as an outpatient. She feels relatively well.
November 30, 2009: Nilufari is undergoing a complex examination at Petrov Institute of Oncology. Her blood counts are growing very slowly.
January 1, 2010: The number of platelets in Nilufari’s blood is gradually increasing. Nilufari will be undergoing a tomography test on January 27th. The cost of test is approximately 18,000 rubles. The family continues to depend on the financial support.
February 28, 2010: Nilufari’s platelet counts are finally rising. She feels well and is in a good mood, but still wants to go home. Nilufari still has a large debt to the clinic for her treatment.
March 7, 2010: Nilufari is at home now and feels well. At the end of March she will have to undergo planned tests.
April 15, 2010: Nilufari is now at home, tended to by her grandmother and aunt. The next examination was going to take place in St. Petersburg after April 20, depending on issuance of passport for Nilufari. We hope that a sickness certificate signed by an oncologist will speed up the process and papers will be ready by April 20. For now, Nilufari was examined at home and results sent to the doctor in St. Petersburg who confirmed they were all right. Nilufari is feeling well and is in a good mood, her appetite is fine. The platelet count has gotten normal.
May 23, 2010: Nilufari came to St. Petersburg. She feels well and will begin tests on May 24th.
July 3, 2010: Nilufari underwent all planned tests. She is doing well.
August 18, 2010: Nilufari underwent full examination and went home. We are happy to report she is fine.
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Marina Kochemarova is 32. In her former life, she was a model and an active organizer of community events, such as motocross competitions. Then she had a terrible disease - synovial sarcoma - that almost killed her. After three years of fighting for her life, Marina won - but at the cost of losing her arm, and most of the shoulder. Because of this disfigurement, she is unable to wear regular clothes, as they cannot stay on just one shoulder. During years of treatment, Marina’s and her relatives’ savings were spent and they incurred debts. She now needs a prosthetic arm to attempt a return to normal life. However, it has proven very difficult to find a company that could make a prosthetic limb for such a radical amputation. The only company that was able to help was Touch Bionics from Scotland. They offered Marina three options, ranging from a cosmetic arm with limited function to almost human-like bionic arm. The costs of the prosthetic options vary from $34,000 to $101,000. Please support Marina and help her return to normal life!
April 1, 2010: Marina received a donation of $34,000 from Russian parlamentarian, Sergei Mironov. Thank you very much! Marina now needs help with paying for travel expenses to Scotland (close to $3,000).
April 14, 2010: Argumenty i Fakty newspaper has published article about Marina.
April 27, 2010: Marina will need to arrive to Scotland by May 2 for initial consultation and taking her measurements. Once her prosthesis is ready, she will travel to Scotland again to have it installed.
May 11, 2010: Marina returned from her first trip to Scotland where she had visited the clinic in Livingston, near Edinburgh. The clinic personnel spent several days matching the color of her skin to her right arm. Marina saw samples of the prosthesis and was very impressed by the quality. Once hers is ready, she will be able to bend the fingers. Marina has no doubt she will be able to wear short sleeves! In about two and a half months, Marina will return to Edinburgh to pick up the custom made prosthesis.
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Inna Shakhmaeva is 9 years old. When she was 4, she stopped breathing in her sleep. Miraculously, her parents managed to save her. She then spent four months in intensive care unit on artificial lung ventilation. Inna was diagnosed with apnea (Ondine curse). Eventually, she became stable and was able to breathe by herself. However, in three years, Inna suffered from the same health problem. The doctors were unable to help her, and she needed to be on artificial lung ventilation twice a week. As a complication, Inna often suffered from bronchitis.
Fortunately, her parents found out that Inna could benefit from an operation to implant a pacemaker. The surgery could be performed in Russia, but the pacemaker was manufactured in USA and cost $66,000. We contacted the manufacturer (Avery Biomedical Devices) and it graciously donated part of the equipment to Inna. By September 1, 2009 Inna’s parents and their supporters were able to raise the rest of the amount.
June 18, 2010: Today Inna had surgery to implant the breathing pacemaker. It took many months to have the device certified in Russia. Inna’s parents along with parents of other children who needed the pacemakers worked hard to get equipment certified as quickly as possible. Finally, their efforts were rewarded. We wish Inna and other children speedy recovery!
September 22, 2010: After years in the hospital, where Inna was constantly hooked to a ventilator and was continually suffering pneumonias, she was finally able to go home. We helped her family with getting a substantial discount on the device and in communication with the manufacturer.
Channel One Russia showed the coverage of Inna Shakhmaeva’s unique surgery [Rus].
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Ian Korchenkov is 16 months old. He has an inherited disease, Wiskott-Aldrich syndrome that affects only boys. Sadly, Ian’s older brother died at the age of 2 from the same disease. But there is still time to save Ian. He needs bone marrow transplant that is the only cure for this disease.
Ian lives with his retired grandmother. Part of the money for Ian has already been raised, but he still needs $10,000 to pay for the search for the donor and delivery of transplant to St. Petersburg. Please help Ian survive childhood!
November 13, 2009: Ian is monitored at R. Gorbacheva clinic. He feels rather well, but his blood counts fluctuate, as well as hemoglobin levels.
December 9, 2009: “Ian was at the Children’s hospital No.1 from November 15 to November 25 for treatment of lymphadenitis. We are now at home, and Yan’s condition is relatively good. Once every two weeks we come for tests to R. Gorbacheva clinic. Ian started speaking, is very curious about everything and enjoys helping me with various little tasks. He is a very kind and happy boy. We are enormously grateful to everyone who responded to our request for help.”
- Ian’s mother
January 12, 2010: A donor for Ian was found. Transplantation is scheduled for February; the exact day is being verified. We urgently need to raise 2,500 euros for the delivery of transplant.
February 4, 2010: Ian will soon be hospitalized at Children’s hospital No.1 for tests prior to transplantation.
February 28, 2010: Ian’s transplantation is scheduled for March 15th. Within a week, we need to raise 2,500 euros for delivery of transplant.
March 14, 2010: Transplantation took place on March 13th.
April 3, 2010: Ian’s leukocyte count is back to normal. He feels rather well, has a good appetite and is in a good mood.
April 30, 2010: Ian suffers from stage IV intestinal GVHD. He is in intensive care unit in a serious condition.
June 17, 2010: Ian recovered and was allowed to go home. He will be now monitored as an outpatient.
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Olya Bogatova is 10. In June 2009 she started feeling unwell and was having frequent nosebleeds. Eventually, she was diagnosed with acute lymphoblastic leukemia. At the hospital, Olya developed serious complications: kidney failure and diabetes.
In November 2009, Olya’s doctors recommended her to undergo bone marrow transplantation. An unrelated donor needs to be located at the international bone marrow donor registry, and the search costs 15,000 euros. Olya is being brought up by her grandmother who had to leave her job to care for Olya at the hospital. They need financial support to pay for the donor search and for Olya’s treatment. Please help Olya!
August 23, 2009: Olya had serious complications due to stones in her kidneys. She is now undergoing another course of high-dosage chemotherapy. The girl was recommended unrelated bone marrow transplantation. In the next few days, she will be typed, and the results will allow determining whether Olya has matching donors at the international registry. Olya’s family still needs financial support.
November 12, 2009: A decision was made to initiate a donor search for Olya. Therefore, we need to raise 15,000 euros for the donor search and 2,500 euros for delivery of transplant.
December 24, 2009: The money sent for Dasha Kuznetsova’s donor search will be used for the donor search for Olya instead, since Dasha could not wait for the search results and urgently underwent transplantation from her mother.
January 12, 2010: Olya feels well. She is starting a planned course of maintenance therapy. The main course of treatment is completed, and Olya achieved remission. She still needs therapy with Noxafil.
January 26, 2010: “Happy World” fund raised the rest of the money for the donor search and delivery of transplant for Olya. Therefore, as of now, the fundraising for the donor search and delivery of transplant is over, but Olya still needs Noxafil that costs 80,000 rubles per bottle. Each bottle lasts her a week.
January 30, 2010: Olya started a scheduled cycle of maintenance therapy. On January 27th she had a lumbar puncture and bone marrow puncture. Due to Dexamethasone therapy, her blood sugar rose and she was assigned a sugar-restrictive diet. Olya’s favorite foods are not disallowed and she is very sad. She also wants to learn to play a guitar and would be very happy if someone could give her the instrument. Olya’s grandmother was hospitalized due to high blood pressure, and Olya is being cared for by her mother.
February 28, 2010: During the last month, Olya had pains due to stones in her ureters. She had surgery to install shunts in ureters and she now feels better. Olya was able to start another cycle of maintenance therapy. She still has fungal infection in her lungs, and CT scan even showed some worsening. Olya needs to continue Noxafil therapy: 1 bottle lasts her 5 days. The search for the bone marrow donor is ongoing.
April 15, 2010: Olya is recovering after another chemotherapy course. She had serious complications, renal bleeding, which the doctors managed to overcome. Fortunately, the last lung tomography and blood counts allowed the doctors to cancel antifungal drugs, and Olya does not need Noxafil any longer.
May 6, 2010: Olya was hospitalized due to fever. The doctors are investigating the cause of pain in her kidneys’ area; so far, tests show no stones in Olya’s kidneys.
June 4, 2010: Olya feels better, her fever is gone. There is another problem however. Olya has an unstable blood pressure and needs a blood pressure monitor to control it. Olya’s grandmother is asking to help them in purchasing it.
July 6, 2010: Olya is at home but every Tuesday she comes to the outpatient unit for tests. If the results are good, she goes back home. Olya and her grandmother are very happy that they don’t need to stay in the hospital all the time. However, Olya is missing her friends as they all left on vacation. So she spends a lot of time making up fairy tales.
Recently, Olya got a guitar as a gift and now she wants to learn to play it. Before the girl got sick, she really wanted to go to music school and her teachers were noting her perfect pitch and strong vocal ability.
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Alexei Cherniy is 17 years old. He was in his last year at high school when he got sick with myelodisplastic syndrome (refractory anemia with excess blasts RAEB-1). In February 2009, Alexei (Alesha) came to St. Petersburg from Omsk, his native Siberian city, and the test results showed that his illness is progressing and transforming into acute leukemia (M6 version). Alexei needed bone marrow transplantation, and, fortunately, a donor for him was found in Germany. His relatives raised 5,000 Euros, but the rest of the money (10,000 Euros for the collection of transplant and 2,500 Euros for the delivery) has to be collected as soon as possible, because Alexei’s remission is unstable.
July 10, 2009: Alesha underwent bone marrow transplantation. However, he still owes donor registry 10,000 euros.
July 21, 2009: Thanks to donation from Beltel Worldwide, we transferred 7,250 euros to the bone marrow donor registry.
September 10, 2009: Alesha successfully recovered after transplantation and the doctors allowed him to go home to Omsk for a month.
October 15, 2009: Alesha and his mom came to St. Petersburg for control tests.
October 23, 2009: Latest tests confirmed the remission. Alesha has no “graft-versus-host” reaction and feels and looks good. The tests however revealed an aspegillosis and Alesha has been prescribed a 400mc/day dose of Vfend. The boy had already left for home in Omsk, but scheduled to come back to St. Petersburg for testing in a month.
January 15, 2010: “On January 19th, we will come to the clinic for another round of tests. Alesha feels well and was taken off Vfend therapy for now.”
- Alesha’s mom
February 4, 2010: Aleksey underwent testing and he is doing well. Based on puncture results, donor’s bone marrow engrafted fully. He previously had heightened transaminase, but after he was prescribed liver protecting medications, the counts normalized. Aleksey is currently taking only Biseptol.
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Hudoidod Yazonov came to St. Petersburg with his family from Tajikistan. On April 1, 2009 Hudoidod’s throat started to hurt, and an ambulance took him to Children’s hospital No.1, where he was diagnosed with acute leukemia. He has a brother, Islomidin, who is 4, and a sister Oisha, who is 17. The family struggles to earn living. Hudoidod’s father works in farming for a few weeks in summer, and that is all the income they get in a year. Meanwhile, as a non-citizen of Russia, Hudoidod is billed the full cost of his treatment, which amounts to several thousand dollars a month. Let’s allow Hudoidod receive medical treatment he vitally needs!
June 3, 2009: Hudoidod is scheduled for the transfer to the chemotherapy department. Hudoidod’s mother, Zulfiya, is grateful to Advita contributors for supporting her son.
August 23, 2009: Hudoidod turns 8 years old on August 15th. The volunteers of the Internet forum “St. Petersburg Club of Parents” will be distributing gifts for Hudoidod. The treatment goes according to plan. Unfortunately, contributions for Hudoidod get barely collected.
October 2, 2009: Hudoidod is close to completing the main treatment course that will last another month. He feels well.
November 6, 2009: Hudoidod is completing the main treatment by November 10th. He will be undergoing supportive therapy in Dushanbe, his home city. With the help of our colleagues from the Foundation “Give Life”, the Atlant Soyuz airline provided Hudoidod’s family free tickets from Moscow to Dushanbe. We now need to raise money for the train tickets to Moscow and supporting medications. Hudoidod’s family remains in a dire financial situation, and will not handle expenses on their own.
November 30, 2009: Hudoidod returned to Tajikistan. During the next year and a half, he will have to take mercaptopurine and dexamthasone, weekly intramuscular injections of methotrexate and intravenous injections of vincristine every six weeks. The total cost of medications is approximately 8,000 Somoni or $1,800. After great efforts have been made to treat Hydoidod in St. Petersburg, the Ministry of Health of Tajikistan took over the responsiblitiy to look after the boy at home. In advance of Hudoidod’s return, Sherali Rakhmatullayev, Acting Chief, Department of Medical Services Ministry of Health of Tajikistan, said in an interview with an agency Asia-Plus: “We can give 100% guarantee that this child will not be left without care and attention. Once he arrives, we will send him to the senior specialist [hematologist-oncologist]. We do not foresee any disruptions in the boy’s treatment”. The Ministry of Tajikistan agreed to provide 3,000 Somoni to cover Hudoidod’s treatment till the end of 2009 and will be allocating the remaining amount in 2010. Full text of the interview with Asia-Plus can be found here.
