Maria Veselova was a 24-year old single mother. She has been bringing up her son Alyosha by herself since he was year and a half. In 2009, Maria started feeling unwell and was diagnosed with myelodysplastic syndrome (MDS), which was a blood disorder that predisposed Maria to transformation into acute myelogous leukemia.
The only chance for cure for MDS could result from bone marrow transplantation. Maria needed 15,000 euros to pay for the search for the bone marrow donor at the registry in Germany and collection of bone marrow.
Feb 23, 2010: Maria had low blood counts (platelets and hemoglobin) so every two-three weeks she needed blood transfusions. At that time, she was at the clinic on a transfusion and usually felt better afterwards. In addition, she was given injections to increase her blood counts.
May 19, 2010: A week before, Maria was discharged from the hospital. After blood transfusions, she felt better but her blood counts started going down. Maria’s life depended on blood transfusions, and the intervals between them were shortening. Unfortunately, a donor for Maria was not found at that time.
Jun 10, 2010: A donor for Maria was found! We helped Maria with paying for collection of the bone marrow - it cost 10,000 euros.
Aug 19, 2010: Maria has developed a bacterial sepsis and was unable to overcome it. Sadly, she passed away.
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Kirill Tyutyunnik will always stay 7.
In April 2008, he was diagnosed with the stage IV neuroblastoma, a rare type of cancer that frequently recurs. Unfortunately, this was also the case with Kirill - even after bone marrow transplant procedure, the disease returned in August 2009. With the relapse, there was no further treatment available for Kirill in Russia, so his parents searched for new methods that are still undergoing clinical trials and recruit volunteers. There was a number of such studies in the U.S., and Kirill was accepted into MD Anderson hospital in Houston, Texas. Even experimental treatment, however, comes at a cost: the clinical trial was estimated at $89,000.
Nov 05, 2009: Kirill was shown on Russian TV this week.
Nov 19, 2009: Kirill’s family transferred the full amount to MD Anderson today!
Dec 05, 2009: Kirill and his parents arrived to Houston! They are staying at Ronald McDonald’s House just steps away from MD Anderson hospital. On Monday, December 7th, Kirill will start tests and will meet his doctor.
Dec 10, 2009: This week, Kirill was tested and based on the results, he qualifies for the clinical trial he traveled for. He will start therapy on Monday, December 14. Since he had a very low hemoglobin, Kirill urgently needed blood transfusions, and he received one immediately on Monday, and one more the next day.
Dec 23, 2009: Unfortunately, based on the test results, Kirill does not respond to the therapy. Next Monday, December 28th, the boy will be switched to another protocol which is now under doctors’ discussion. Kirill needs blood transfusions almost every day.
Dec 30, 2009: Kirill started new treatment protocol. He will need at least 4 courses of chemotherapy. As of now, he only has money left for two courses.
Jan 05, 2010: Tomorrow, Kirill will also start radiation therapy on his eyes which is required urgently. The continuing treatment will cost $43,500. Kirill is receiving blood transfusions practically daily.
Jan 20, 2010: Kirill has been showing signs of improvement after the first cycle of chemotherapy. He is more active, plays and talks, and requires much fewer blood transfusions. It seems to indicate that his bone marrow is clearing cancer cells. After the second cycle that will start the first week of February, Kirill will undergo CT scan to evaluate effect of treatment.
Feb 18, 2010: Tomorrow we expect to receive a cost estimate from MD Anderson Orlando hospital where Kirill is eligible to participate in a new clinical trial. It is likely not going to be the last trial, as MIBG therapy may also be an option in the future. This week Kirill started a new chemotherapy regimen and he is feeling nauseous. But overall, he is active, seems to look better and continues playing video games.
Feb 18, 2010: An article about Kirill was published in North American edition of Argumenty i Fakty.
Feb 26, 2010: Kirill’s family received a new cost estimate for a clinical trial at MD Anderson Cancer Center in Orlando, Florida - it is for $81,000. Please help Kirill!
Mar 12, 2010: Kirill and his parents arrived to Orlando on March 11th. Today they met with Kirill’s treating doctor at Arnold Palmer hospital to go over details of a new clinical trial. Kirill is feeling rather well except for occasional pain in his side.
Mar 22, 2010: Upon arrival to Orlando, Kirill had a number of tests, including MIBG and CT scans. On March 22nd, he started chemotherapy with an experimental drug and a medication for osteoporosis. The trial will run for at least 3 cycles, and if Kirill responds well, he may have to stay in Orlando for a long time. Last week Kirill had high temperature, but, fortunately, no pain.
Apr 5, 2010: Kirill is still feeling nauseous despite taking several anti-nausea medications. He is not eating well and lost some weight. His eye is getting better, however, and soft tissue around the eye is looking more normal.
Apr 26, 2010: Kirill’s disease appears stable, that is some of his lesions have gotten smaller, and a few a little larger. It means the current clinical trial has been more effective than previous chemotherapy. Further treatment options will be discussed with his parents once all the test results are in.
May 03, 2010: Based on test results, Kirill’s disease is stable. However, due to low leukocyte count, he will not be able to start chemotherapy this week. He receives neupogen injections to stimulate leukocyte growth and was also installed a feeding tube due to constant vomiting and weight loss. Kirill’s treating doctor offered to sign him up for another Phase I clinical trial in the hope of getting a better response. There was only one spot left in the trial, and if Kirill is eligible, he could start therapy next Monday.
May 26, 2010: Moskovsky Komsomolets newspaper has published article about Kirill.
May 27, 2010: Last week, Kirill started radiation therapy on his abdomen where the main tumor is located. It will last ten sessions. Afterwards, he will be evaluated for radiation therapy on his skull as well. Kirill has now been staying in bed for several weeks due to fatigue. He also needs strong painkillers due to pain in his back and sides.
June 23, 2010: Kirill was transferred to a different chemotherapy combination, because the test results confirmed that the tumor stopped responding to the previous protocol. Today Kirill started therapy with Vinorelbine and Sirolimus. He is continuing radiation therapy as well, and may receive radiation on his leg, where he has a lot of pain. His doses of painkillers were increased. However, Kirill is in good spirits. He was happy to see his little friend Yulia who came to visit him from Russia and promised her to get well soon.
July 19, 2010: Kirill is not responding to the latest chemotherapy. Unfortunately, no other treatment options are available to him anymore. The disease is progressing and new lesions are appearing. Kirill is starting to have difficulty breathing.
July 26, 2010: Kirill and his parents went to the hospital in the morning, as usual. Unfortunately, in the afternoon, Kirill had difficulty breathing that could not be helped medically. He passed away at 4 PM.
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Dasha Kuznetsova was just 2 when she got sick. She has two older brothers, mom and dad. Her 2nd birthday Dasha spent at the hospital due to a high fever. Unfortunately, the blood test results showed extremely high leukocyte count and Dasha was diagnosed with acute lymphoblastic leukemia. In September 2009, Dasha started treatment. It seemed that she tolerated it well and her test results were close to normal… But the control tests showed that Dasha did not achieve remission. She was categorized as a high-risk patient and then needed an urgent bone marrow transplantation. Unfortunately, Dasha’s brothers weren’t good matches as donors, so an unrelated donor has to be located at the bone marrow donor registries abroad. Although Russian Help Fund agreed to pay 10,000 euros for collection of bone marrow, the donor search required additional 5,000 euros and delivery of transplant to St. Petersburg costs 2,500 euros.
Dec 13, 2009: We transferred $3,000 to S. Morsch registry as a partial payment for the bone marrow donor search.
Dec 24, 2009: Unfortunately, Dasha’s blasts began to grow very fast and it was impossible to wait until the donor is found. The doctors decided to perform an urgent haploidentical transplantation from the mother. Dasha is now in cytopenia; she was diagnosed with aspergillosis and needs Vfend.
Jan 28, 2010: Dasha recovered after transplantation and was transferred to outpatient monitoring. She began showing first signs of skin GVHD.
Feb 28, 2010: Dasha is monitored as an outpatient. She feels well and is in a good mood.
Mar 26, 2010: Dasha takes immunosuppressive therapy and Vfend. She feels well.
Apr 30, 2010: Unfortunately, Dasha relapsed. She underwent anti-relapse chemotherapy under FLAG protocol and donor’s lymphocyte infusion. The doctors are waiting for her response to treatment. Dasha still needs Vfend.
May 25, 2010: Since Dasha had no response to anti-relapse therapy, the doctors are now considering another transplantation along with Clofarabine injections.
June 25, 2010: Sadly, Dasha passed away today.
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Masha Trukhina was 6 years old. She had alveolar rhabdomyosarcoma. The disease first appeared in June 2008 as a lump on Masha’s left temple. Subsequent treatment, including multiple chemotherapy courses, distant lithotripsy and surgeries, was not effective. In March 2010, Masha was discharged to palliative care. The tumor continued to grow with metastases to the lymph nodes in her neck. Masha’s parents could not resign to the doctors’ decision and began searching for treatment options abroad. Since Masha’s disease was a rare and aggressive type of cancer, many clinics were unable to accept her. Only the Children’s Memorial Hospital in Chicago agreed to take Masha for a clinical trial. In mid-May 2010 we received a cost estimate from the hospital.
Unfortunately, on June 17, 2010 Masha passed away, before getting a chance to undergo therapy within a clinical trial.
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Nastia Pimenova lived in an orphanage. In 2001, she was diagnosed with leukemia, and two years later she achieved remission. Unfortunately, Nastia had a relapse in 2006, but beat cancer again by September 2007. In August 2009, Nastia was diagnosed with a second recurrence. At that time she urgently needed bone marrow transplant to save her life. Thanks to Nastia supporters’ help, we were able to transfer $4,000 for the donor search for Nastia.
Mar 18, 2010: A donor for Nastia was found and the debt to the bone marrow donor registry was paid for in full. Transplantation is scheduled for March 27. Nastia came to St. Petersburg with a nurse who can only stay with her for a few days.
Mar 26, 2010: Nastia started pre-transplantation chemotherapy. The transplantation is scheduled for March 27th. Nastia feels well. We are very grateful to Russian Help Fund for paying for around-the-clock sitter for Nastia.
April 30, 2010: Nastia suffers from stage IV intestinal GVHD. She is in intensive care unit on enteral nutrition and receives painkillers around the clock. Nastia needs Intestamine, intravenous Vfend and Albumin constantly.
Nastia was transferred to intensive care and put on artificial lung ventilation. Sadly, Nastia passed away the same day, May 8, 2010.
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Yaroslav Burdun was born in Crimea, Ukraine, on May 19, 2009. When he was just two months old, he was diagnosed with acute lymphoblastic leukemia and urgently hospitalized. Yaroslav underwent therapy at a hospital in Simpheropol, Ukraine, but while there he had a relapse of leukemia.
His only chance to live was to receive a bone marrow transplant from an unrelated donor. Unfortunately, by the time his family raised enough money to arrive for treatment in Germany, it was already too late to save Yaroslav. His aggressive disease continued to progress and it claimed his life on April 17, 2010, when Yaroslav was almost 11 months old.
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Fuad Abbasov is 21-years-old student of the State University in Baku, Azerbaijan. He wa majoring in Economics, had passion for languages and dedicated the rest of his time to sports. In his last year in the university, Fuad started feeling weak and dizzy, and began losing appetite. He went through the blood tests and found he had the chronic myeloblastic leukemia (CML). Fuad was prescribed Glivec that he took for six months. During medication, his condition slightly improved and the blood counts started to normalize. Unfortunately, remission did not last long. In August 2009, Fuad stopped responding to Glivec and his condition deteriorated rapidly. Because of fever and excruciating pain in the bones, he could not move. The doctors in Azerbaijan were not able to determine the diagnosis, so his family took him to Turkey where diagnosis was identified: Fuad’s chronic myeloblastic leukemia transformed into acute lymphoblastic leukemia (AML). The Turkish doctors managed to slow down the disease, but further treatment required bone marrow transplantation.
Fuad went for treatment in the University Clinic of Leipzig in Germany. He underwent chemotherapy but his condition remained unstable: the hemoglobin was extremely low, the platelets’ count fell to 7 (with normal level of 220-250), and temperature stayed high. The transplantation remained Fuad’s only chance. The estimated cost of procedure is 250,000 euro. With the help of friends and relatives, Fuad’s family managed to collect 70,000 euro. The situation with the rest of the payment remains critical. To find a donor, the family sold their apartment - it was the only and ultimate source of funds.
Jan 14, 2010: Fuad underwent bone marrow transplantation today. He remains weak - however, the doctors have optimistic prognosis for him. The clinic agreed on a lower prepayment with the remaining portion to be collected shortly. Please support Fuad!
Jan 27, 2010: The information about Fuad was published on Moscow Echo site.
Feb 03, 2010: The Live Journal published extended post on Fuad (in Russian).
Feb 15, 2010: Unfortunately, Fuad’s condition has deteriorated as he had entered a “graft-versus-host” stage. He is weak, nauseous and has fever. Through donations and information placed in media, Fuad’s family managed to collect over 40,000 euro. With the revised cost of treatment (180,000 euro), the remaining amount to the clinic comprises 35,000 euro approximately. The copy of the bill for Fuad’s treatment can be found here.
Feb 26, 2010: Fuad’s mother is returning to Azerbaijan, but his father will be staying with Fuad. Unfortunately, there are no changes in Fuad’s condition. He has no appetite and spends entire time in bed. The doctors continue to lower the fever with antibiotics.
Feb 28, 2010: Unfortunately, Fuad has blasts in his blood and is relapsing. The doctors began an intensive course of chemotherapy. Given these complications, the amount of debt has grown back to 78,900 euro. The debt to the clinic has to be paid by the end of March, however everything depends on how Fuad would respond to the chemotherapy.
Mar 8, 2010: Fuad’s condition has slightly improved. The temperature fell to 37,9
- 38,3. Currently, Fuad is undergoing clinical trials with Omacetaxine Mepesuccinate (OMA). Although his blood counts are still around zero (i.e. leukocytes 0,1; platelets 1-2), doctors say that the blasts reduced. Fuad is in a good mood, sometimes exchanges SMS with his relatives. Debt to the clinic still stands at around 75 thousand euro, and must be paid off by the end of March.
Mar 30, 2010: Fuad is again in a serious but stable condition. He lost a lot of weight and sleeps around the clock. Fuad receives chemotherapy, antibiotics, other medications and intravenous nutrition. At times, Fuad’s temperature rises. Fuad’s condition is complicated by continuous bleeding in his bladder. The doctors are doing everything they can to stop it. Fuad receives platelets and other blood components. When Fuad feels better, he talks and tries to keep a conversation.
Fuad wants to live very much and fights hard for his life. At times, he even gets up to exercise with a physical therapist. Fuad started to eat a little by himself. His father stays with him at the hospital. Fuad’s condition improved somewhat after his sister came to Leipzig and spent a week with him and dad. The bill for Fuad’s treatment is still unpaid. The remaining amount is very large.
Tragically, Fuad passed away on April 11, 2010. He will always remain in our thoughts.
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Zhenya Zotin was 7 years old. He suffered from neuroblastoma. It all seemed to start after Zhenya fell off a bike in June 2008 and had a serious trauma. However, only six months later, he was eventually diagnosed with stage IV neuroblastoma. He underwent six rounds of chemotherapy in Russia, and two more in Germany, but the tumor did not respond. At the end of December 2009, the doctors in Germany couldn’t offer a further treatment. Fortunately, a clinic in London, UK (Harley Street Clinic) agreed to accept Zhenya for treatment. The therapy is estimated to cost GBP 150,000 .
Jan 18, 2010: No medical news on Zhenya’s condition yet - another week of chemotherapy is coming, then recovery period.
Jan 26, 2010: Zhenya completed the first cycle of chemotherapy and seemed to have a response. A video about Zhenya was filmed by his support group. The video can be viewed here.
Jan 29, 2010: Zhenya started feeling severe abdominal and back pain. The doctors must constantly monitor Zenya’s condition.
Feb 9, 2010: Zhenya’s condition has worsened. The computer tomography showed an increase in tumor and doctors decided to switch to a more intense chemotherapy.
Feb 26, 2010: Zhenya continues to feel very strong stomach ache, his hemoglobin is falling, and he needs blood transfusions.
Mar 3, 2010: Zhenya’s condition deteriorated sharply. His pulse slowed down and Zhenya is breathing with oxygen mask.
The sad news came from London on March 9, 2010. Zhenya Zotin passed away.
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Alesha Levantuev was diagnosed with neuroblastoma more than 4 years ago. He was a 17-year-old boy who studied economics and loved sports, music and reading, when suddenly he fell ill. He went through chemotherapy, radiation therapy, bone marrow transplantation and several surgeries, and won! Then in May 2009, he had a relapse. Fortunately, his cancer retreated after the first chemotherapy round. But Alesha faced another difficult challenge: severe type of zygomycosis, a fungal infection in his intestines. He needed antifungal drugs, Noxafil and Ampholip - the daily dose of which cost $2,000! The therapy was going to last for at least two weeks.
Nov 29, 2009: Alesha was in a critical condition as his intestinal infection worsened. The doctors were going to attempt removing nectrotic tissue from his intestines. Alesha would require expensive antibiotics such as Noxafil and Amfolip after the surgery.
Dec 04, 2009: Alesha was recovering after his surgery. He needed more surgeries in the nearest future to remove all the necrotic tissue in his intestines. At the same time, Lesha had to take 5 vials of antibiotics Ampholip and Noxafil a day, at a total daily cost of $1,300.
Dec 14, 2009: Alesha underwent another surgery. He was in a stable condition but had to continue treatment with Ampholip.
Unfortunately, Alesha developed resistance to the antibiotics. He passed away on January 10, 2010, after a long struggle for his life.
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Anna Soboleva was 20 years old. She graduated from the high school with honors and enrolled into college. She had lots of dreams and plans for the future. Unfortunately, it all collapsed in a moment when Anna learned she had acute a lymphoblastic leukemia. However, she did not give up and continued studying while undergoing treatment. In March 2009, Anna had a recurrence of the disease. Her only hope for recovery was the bone marrow transplantation. The doctors believed Anna had good chances for a complete cure. She needed to raise 15,000 euros for the bone marrow donor search through the bone marrow donor registry in Germany and pay for delivery of the transplant to the clinic in St. Petersburg (2,500 euros). Anna’s friends and relatives transferred 4,000 euros to the registry, which allowed donor search to be initiated. In August 2009, a matching donor was found! The transplantaiton was scheduled for the end of September 2009.
Aug 25, 2009: Anya was in deep cytopenia, a condition when all the blood counts are very low. She was not feeling very well. But the news that a donor was found made her happy and hopeful! The transplantation was scheduled to the end of September.
Oct 24, 2009: Anya underwent the bone marrow transplantation on October 2nd. Her blood counts were growing and she felt well - except she developed a rapid engraftment syndrome and first signs of “graft-versus-host” reaction (with her liver and intestine slightly affected). Anya continued treatment with Zenapax and Entocort, and needed a Vfend.
Nov 08, 2009: Anya wrote a letter: “Dear friends! I’m still in the hospital fighting the complication after the bone marrow transplant: acute HVGD which affected my intestine. For the whole month, I am not able to eat anything, and every day I need to take very expensive drugs: Ademetionine - twice a day, Albumin - 1-2 times a day, Vfend - twice daily. I want to thank everyone who helped me to pay for the donor search and the delivery of the transplant. I don’t owe anything to Stefan Morsch Registry, and now I need your help only to pay for the medication. I hope that I can depend on you now and in the future, and wish all of you to stay healthy.”
- Anya Soboleva
Nov 13, 2009: Anya was in the Intensive Care Unit and was taking Albumin and Vfend.
Tragically, Anya passed away on December 30, 2009.
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Ilya Latiev was 19. He fought cancer since 2003. In February 2009 he had a relapse and was diagnosed with acute lymphoblastic leukemia (ALL). Due to a long-term chemotherapy, Ilya also developed problems with his liver and heart function. In August 2009, Ilya was referred for an urgent bone marrow transplantation. Since he lacked a related donor, a matching unrelated donor had to be located at the bone marrow donor registry. The search for the donor cost 15,000 euros.
In November 2009, we transferred a payment of $2,500 to the registry to initiate the search for the donor.
Sadly, Ilya did not make it until donor was found. He passed away on November 27, 2009.
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Louisa Vassilieva was diagnosed with nephroblastoma, a cancer of kidney, in October 2008. Despite surgical removal of the kidney, chemotherapy and radiation, her disease was stubbornly refusing to surrender. Due to difficult location of her lesions, Louisa had to travel to Germany with her mother to have them surgically removed.
Unfortunately, the treatment did not succeed. Louisa passed away on August 27, 2009.
