Anechka died on November 23, 2010

Dear friends!
We came to Bone marrow transplantation clinic at Pavlov State Medical University from Tomsk. Our daughter Anya is 6. She has a relapse of acute lymphoblastic leukemia, and she urgently needs bone marrow transplantation.
In winter Anya's brother Fedor was born. They are 100% compatible, but he is still too small to become a donor. We have no time for the donor search at the international bone marrow registry. The only chance our daughter has is to undergo haploidentical transplantation from her father. We were told that it requires special equipment for cleaning of the donor's cells that is not covered by our quota.
The exact name of the equipment is CliniMACS CD34 Complete Kit with Accessories, order #177-01. Each column costs 6,350 euros in Russia, and Anya will need two of them. We cannot afford this purchase, but the columns have to be paid for urgently, because transplantation cannot be postponed.
Please help our daughter! Thank you in advance.

Ekaterina, Anya's mom.

Medical conclusion

Update as of August 3, 2008. Since Anya's transplantation was needed urgently the columns were delivered to the clinic without the prepayment. At present, our fund needs to pay off the debt for the equipment of 416,000 rubles.
The transplantation went as planned. Anya is now in the third week post-transplantation. She is gradually recovering. Her leukocyte count is 0.9 and thrombocyte count is 100. Please help us pay off our debt to the vendor.

Update as of August 13, 2008. The bill for the columns was paid out of non-specified donations received by our fund. Anechka recovered after the transplantation and was discharged for outpatient monitoring. She feels relatively well.

Update as of September 30, 2008. Anya's GVHD worsened and she is planned to receive Enbrel injections. She also needs Vfend therapy. A course of Enbrel (16 injections) costs 5,000 euros, while a package of Vfend that costs 25,000 rubles lasts her two weeks. Anya's family needs help with buying expensive medications and paying apartment rent.

Update as of October 31, 2008. Anya's GVHD was taken under control. She needs Vfend therapy in 300 mg dosage, and it may be increased to 400 mg a day in the next few days. A package that costs 25,000 rubles lasts her just a week.

Update as of December 22, 2008. Anya's condition is stable, and transplantologists allowed Anya and her mother to go back home to Tomsk. Her next checkup is in two months. We thank all donors, supporters, and volunteers that helped Anya in St. Petersburg. Anya is still taking Vfend and Entocort.

Update as of February 17, 2009. Ania is coming for an examination on Sunday.

Update as of March 1, 2009. Anya had a relapse. She now receives anti-relapse chemotherapy, which will be followed by second bone marrow transplantation from her younger brother who is a 100% match and has now grown so much that he can be a donor.

Update as of March 20, 2009 Anya is in cytopenia after anti-relapse chemotherapy under FLAG protocol. She has high temperature. The girl receives Neupogen to stimulate leukocyte growth.

Update as of April 4, 2009 Anya's condition worsened. She is now in intensive care unit under doctors' watch. She has problems with speech. She also has low protein in her urine and needs Albumin urgently.

Update as of April 15, 2009 Anya still has breathing problems and is still at the intensive care unit. The girl needs Vfend intravenously against aspergillosis, since she cannot get pills due to an acute intestinal GVH reaction.

Update as of May 12, 2009. Anya was already brought to her room from intensive care unit. While she still has signs of encephalopathy, they have subsided. Anya continues therapy for aspergillosis. She receives Cancidas and Vfend intravenously.

Update as of May 25, 2009. Anya's condition improved to a degree that the doctors allowed her become an outpatient. Her GVHD is under control.
Anya still needs Vfend, however.

Update as of June 3, 2009. Anya is being monitored as an outpatient, and she feels relatively well. Since her hormonal therapy dosage is still high, Anya needs to take Vfend to prevent recurrence of aspergillosis.

Update as of June 17, 2009. Anya had seizures and was hospitalized at the clinic for the doctors' watch. She is planned to undergo infusion of NK-cells for prevention of relapse. We expect to receive the bill for the cylinder for the cell selection in the next few days. The cost estimate is 330,000 rubles (bill). Anya urgently needs help!

Update as of July 15, 2009. Anya is monitored as an outpatient. She receives a planned course of Intraglobin. Anya feels well.

Update as of August 23, 2009. Anechka suffers from skin GVHD again, and was prescribed hormonal therapy and Vfend (to prevent recurrence of aspergillosis during hormonal therapy). Anya needs 400 mg of Vfend daily. The infusion of NK-cells was postponed for some time.

Update as of September 8, 2009. Anya feels well. She runs around and goes outside for walks. Her hormonal therapy dosage is being gradually reduced. As soon as she is taken off hormones, a decision will be made regarding NK-cells infusion. For now, Anya takes hormonal medications, and she also needs Vfend.

Update as of September 30, 2009. Romashka charitable fund had paid the bill for column for Anya. We are enormously grateful to our colleagues for help!
However, since Anya's infusion of nk-cells was postponed, Romashka fund had agreed to let the transplantologists use the equipment for Slava Chistyakov instead.

Update as of October 2, 2009. For now, Anya cannot be completely taken off hormones. She receives the therapy in small doses, because cancellation of it increases GVHD. The doctors are discussing an option of letting Anya go home for a month. She would have to bring Vfend and Intraglobin, as these drugs are unavailable in Tomsk. Anya feels well.

Update as of November 3, 2009. Company Quickpay joined fundraising campaign for Anya. As part of Kind Payments program, they already raised 182,000 rubles for Anya via payment terminals. The money was used to buy Vfend for Anya.
Anya and her mom will come to St. Petersburg for planned testing next week. We are enormously grateful all their supporters!

Update as of December 24, 2009. Anya has been discharged and is going home until the end of January when the photopheresis machine is to start working again. Katya and Anya are saying thank you to all of you for your support and wishing you all a happy new year! Anya is feeling fine.

Update as of January 29, 2010. Anya is at home. She is doing well. The hormonal dosage is being gradually reduced. For the first time during treatment, she did not developed skin GVHD after cancellation of hormonal therapy, so photopheresis therapy has been postponed.

Update as of March 3, 2010. Anechka arrived for planned tests.

Update as of March 14, 2010. Anya completed all tests. She is in complete remission in regards to her primary diagnosis. Anya and mom were already preparing to go home, but the night before their flight Anya had severe seizures. She is now at the clinic under the doctors' watch.

Update as of March 23, 2010. Anya's condition stabilized and she was transferred out of intensive care unit. The test results, unfortunately, show that she developed CNS involvement of leukemia that caused seizures. Anya is now undergoing a course of chemotherapy (injection of Cytosar in cerebrospinal fluid), and may also need an expensive medication, DepoCyt.

Update as of April 3, 2010. Anya completed anti-relapse therapy. The testing of spinal fluid did not show any blasts. Further treatment is under discussion.

Update as of May 19, 2010. Anechka achieved remission and she is now stable. She was allowed to go home for two months to be under local hematologists' monitoring. She still needs Vfend.

Update as of June 4, 2010. Anechka feels well. She is at home and is being monitored locally as an outpatient. She still needs Vfend.

Update as of July 1, 2010. Anya came to St. Petersburg for planned tests and injections of medications. Unfortunately, she started having seizures as a reaction to the medications. At this time, her blood test results are good, and she is planned to undergo donor's lymphocyte infusion to strengthen the result.

Update as of August 4, 2010. Anya feels well. She was allowed to go home. Anya will undergo planned tests in two months.

Update as of October 22, 2010. Anya came to St. Petersburg for tests. Unfortunately, she was diagnosed with extenisve relapse: brain metastases and blasts in peripheral blood. After reviewing Anya's situation, the doctors and parents decided to not start intensive therapy, as this is the 4th relapse and all treatment methods are exhausted. Anya and her mother went back home where Anya will be on maintenance therapy.

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