Another Slava's photos

Hello! My name is Elena Chistyakova. I came to AdVita fund to ask for help with treatment of my son Vyacheslav. Slava was born on January 1, 1992 in St. Petersburg, as the second of my twins.
When my twins turned 3, we moved to Siverskaya where we've been living since then. Slavik and his brother Vladik have always spent time together and they miss each other a lot now.
When Slavik stayed at hospital in Gatchina in 1999 (his adenoids were removed), they wrote letters to each other. They study well, and get only A's and B's in their annual results. From the 5th grade they got very involved with soccer. Slava was a goalkeeper and Vladik was a striker. In summer, they go fishing together. They planned to start playing hockey in winter, but Vladik started the 8th grade alone. Slava only came to school on the first day of school, September 1.
On September 22, Slava was admitted to the leukemia chemotherapy unit of Children's hospital No.1 with the diagnosis of acute lymphoblastic leukemia, high risk. In the future he will need to have bone marrow transplant.
I've been a single mother of my twin boys since their birth. Vladik is now staying with his grandmother, who is disabled. They've always celebrated their birthday, January 1, with their friends. However, this year we are not sure whether we will be able to celebrate. I will be very grateful to everyone who can find an opportunity to help us.
Thank you in advance,

Elena Chistyakova
Home address:
188336 Leningradskaya oblast,
Gatchinsky raion, d. Lampovo
ul. Sovhoznaya d. 10 kv. 16.

Bill from German Bone Marrow Donor registry

Update as of December 19, 2006. After the second chemotherapy block, Slava is finally in remission. His brother did not match as a donor for bone marrow transplant, therefore, the transplantologists decided to initiate a search for the allogeneic donor.
In the next few days we are expecting to receive a bill from the bone marrow donor registry, which will include 15,000 euros for the search for the donor, and 2,500 euros for delivery of transplant to St. Petersburg.

Update as of January 22, 2007. The first partial payment of 2,000 euros was sent to Morsch registry. The registry began the search for the donor.

Update as of January 30, 2007. The bill for the donor search for Slava was paid in full. We now need to raise 2,500 euros to pay for delivery of transplant to St. Petersburg.

Update as of March 14, 2007. Slava's transplantation was scheduled for April 10th. We need to raise the money for transplant delivery by March 25th.

Update as of March 30, 2007. We are still lacking approximately 15,000 rubles to pay for delivery of transplant. In addition, the clinic is currently out of Myleran, a drug necessary for pre-transplantation chemotherapy. Slava needs 368 pills, or 15 packages, which cost 15,210 rubles. The chemotherapy has to start on the morning of April 4th. Slava urgently needs help!
Slava also needs help with paying for apartment rent near the clinic. The rent will be 12,000 rubles a month.

Updated as of April 2, 2007. Slava will need blood of type II(-) during transplantation. If you can donate blood for Slava, please respond!
We are sincerely grateful to Dmitry and an anonymous supporter for their donations, which enabled us to buy Myleran, a drug Slava will need during transplantation.

Update as of April 25, 2007. Slava's blood counts are growing after the transplantation. His leukocytes are now at 1.2. He was transferred into non-sterile zone of the hospital. Slava is not feeling very well for now.

Update as of May 2, 2007. Slava was discharged from the clinic to be monitored as an outpatient. For the next two months he needs to live in a rental apartment near the clinic. Slava needs help with paying apartment rent! He feels relatively well.

Update as of June 9, 2007. Slava now lives in a rental apartment near the clinic. He feels well and go through scheduled examinations. The doctors are planning to observe him for another month, so Slava still needs help with paying apartment rent.

Update as of July 16, 2007. Slava had completely recovered after the transplantation and he was discharged home.

Update as of August 14, 2007. Slava completed planned post-transplantation testing. He is doing well.

Update as of April 15, 2008. Based on puncture results, Slava has 7% of blasts in his bone marrow. He is now hospitalized in BMT clinic for anti-relapse chemotherapy block, which will be followed by injection of donor's lymphocytes.

Update as of April 18, 2008. Slava underwent the first anti-relapse chemotherapy course and he is now recovering. He needs help from blood donors with blood type II(+).

Update as of May 5, 2008. Slava has a difficulty recovering from the chemotherapy course. He is still in cytopenia. His leukocyte counts are only 0.2 and he developed pneumonia in the right lung.

Update as of May 25, 2008. Slava's condition improved although he still has low blood counts. However, they started to grow and the infections were taken under control. The control puncture will take place this week.

Update as of June 17, 2008. The control puncture showed Slava is in remission. He will undergo a course of therapy with Roferon to strengthen the result.

Update as of September 30, 2008. Slava completed a course of Roferon. He is in remission and feels well.

Update as of March 2, 2009. Slava was diagnosed with a relapse. Due to lack of beds at BMT clinic of State Medical University, tomorrow he will be hospitalized at the Adult Hematology unit of the regional hospital for anti-relapse chemotherapy course.

Update as of March 10, 2009. We managed to obtain Regional Health Administration's permission to hospitalize Slava at Children's Hospital No.1. On Friday, he was already transferred to Leukemia Chemotherapy unit of the hospital. The treatment protocol will be coordinated with R. Gorbacheva Institute of Pediatric Hematology and Transplantology.

Update as of March 27, 2009. Slava has been feeling worse since October 2008. He got back pains and ended up walking on crutches. Now he cannot walk at all. On February 25 Slava was diagnosed with the second relapse. He started to get treatment, and after the first few punctures the amount of blasts in his spinal fluid decreased, and the extramedullary foci stopped growing. The doctors are now choosing the treatment protocol. I have to go on an unpaid vacation to be able to take care of my son; my second son Vlad is at home with his grandmother. I will be very grateful for any help since our financial situation is very bad now.
Kind regards, Elena,
Slava's mother

Update as of May 21, 2009. Slava feels better. He walks and his hearing aids allow him hear well. The donor's lymphocyte infusion is planned for September. Until then, he will undergo mini-blocks and punctures.

Update as of May 26, 2009. Slava is in remission in regards to his main illness, but he still has cytosis. On May 19th we went for a consultation to BMT clinic.
The supply of donor's lymphocytes is exhausted. A new shipment of lymphocytes will cost 1,500 Euros. The therapy with DepoCyt and lymphocyte infusions are interrelated. We urgently need to continue treatment to preserve remission and save Slava's life.
I would like to ask everyone who has even slightest opportunity to do so to help me save the life of one of my twins.
Elena, Slava's mom

Update as of May 29, 2009. Slava will be infused with NK-cells that are released from the donor's lymphocytes using special equipment. Therefore, we need to raise these amounts for Slava's treatment:

- 1,500 Euros for collection of donor's lymphocytes,
- 2,500 Euros for urgent delivery of lymphocytes (they live no longer than 24 hours), and
- 350,000 rubles for special equipment for release of NK-cells that will be infused.

The infusion of NK cells is scheduled for June 30th and the donor has already given his agreement. We have a month to raise the money. The bill for the equipment should arrive next week.

Update as of June 03, 2009. Bill for special equipment for release of NK-cells

Update as of June 17, 2009. Slava was taken to intensive care unit due to seizures. He urgently needs intravenous Depakine. We have not yet been able to find it in Russia.

Update as of June 23, 2009. Slava is in coma due to ischemic stroke. The infusion of NK-cells was canceled, and Slava receives intensive therapy.

Update as of July 15, 2009. Slava exited coma. Further treatment is under discussion.

Update as of August 8, 2009. All the drainage was taken off Slava. He is conscious and can speak well. For now, his left leg and arm are not well coordinated. Slava is receiving a course of antibiotics. The next week he will undergo bronchoscopy and based on its results, tracheostomy may also be removed. He is in remission in regards to leukemia.

Update as of September 1, 2009. Slava's condition improved so much that he can now undergo NK-cell infusion that was canceled due to a stroke. The infusion is scheduled for September 15th.

Update as of September 30, 2009. Romashka charitable fund had paid the bill for the column for Slava. We are very grateful for their help! The fund had previously intended to help Anya Seryukova, but due to postponement of her procedure, the Romashka fund has decided to offer help to Slava.

Update as of October 2, 2009. Slava has serious inflammation of esophagus. He is practically unable to swallow and he will be installed gastrostomy today. Slava still needs Vfend and Meronem.

Update as of November 30, 2009. Slava's condition is now stable, but he is still fighting infection in his lungs. He urgently needs Tobi inhalation, each package of which costs 95,442 rubles. In addition, Slava still needs Vfend.
Slava is now learning to walk again, using crutches. As soon as his pleural infection is overcome, he will be discharged home. But we need to get our home ready: Slava and his twin brother sleep on a bunk bed. Due to his condition, Slava cannot sleep on it for now. He needs a special bed with adjustable incline, as well as a wheelchair.

Update as of January 10, 2010. Slava is at home. He was discharged for outpatient monitoring. He continues massage therapy and goes for tests locally. He still needs to buy Vfend, as the doctors will be able to take him off only after positive CT scan results (CT is scheduled for second half of January).
In addition, Slava takes Depakine chronosphere (750 mg). Slava and his mom need financial help with paying for CT scan and taxi ride from Gatchinsky region to the hospital and back.

Update as of February 3, 2010. On January 19th Slava had CT scan of lungs. It noted positive dynamic and much fewer lesions. He is now at home. Once a week he is visited by an osteopathic specialist and massage therapist. Slava can now move much better, but cannot go outside even in a wheelchair due to bad weather. He gets his fresh air from an open window.
Once a month Slava and his mom come to Children's hospital No.1. It is far away, and Slava has a hard time getting there. He gets very tired and nauseous. Slava goes for weekly tests to a nearby clinic and we call his doctor with his test results.
Slava still needs therapy with Valcyte, Vfend, Heptral (pills), and Depakine chronosphere (750 mg). His mom is asking for help with buying them. Slava has gastrostomy, so he needs enteral nutrition, such as Nutrizone energy or Nutrizone with fiber. He is running out of nutrition and needs help with buying it.

Update as of February 22, 2010. Slava is feeling a little better, as transaminase levels went down significantly (to 64 from 150). He has appetite and can eat by himself. His mom received a quota for Slava's treatment and after the holidays she will bring his documents to the hospital so that he could go for tests there.
Slava needs to have EEG and MRI (under a quota), and also figure out what needs to be done with his port, as Slava has had it since 2006. He recently had temperature increase, and the doctors think it may be due to the port. It may be taken out.
Slava also was gastrostomy, and it also needs to be looked at. Slava is continuing maintenance therapy in pills - 6MP, and he still needs therapy with Vfend, Heptral and Depakine. His mom is asking for help with buying these medications.

Update as of March 7, 2010. Slava feels well. He is scheduled for MRI and EEG for March 5th and March 9th. Since he cannot walk by himself, we have to reserve taxi every time and each trip costs us 1,900 rubles. We are sincerely grateful to Ekaterina for help with paying for the next few visits.

Update as of March 11, 2010. Hello! On March 9, Slava was hospitalized at R. Gorbacheva Pediatric Hematology and Transplantology Institute. He had CT scan of his chest and MRI of his head. Based on CT scan results, Slava has a new lesion in his right lung and needs Vfend therapy.
On March 10th he had a surgery to remove gastrostomy and a port. Today Slava feels well and we will be allowed to go home. The next checkup is scheduled for the end of March.
Slava and I are sincerely grateful to Katya who has been helping us to pay for our trips to the Institute and all our supporters.
Respectfully, Slava's mom

Update as of April 3, 2010. Slava is undergoing a course of therapeutic massage and he had some response. However, since he still does not have movement in his arm, he was referred to osteopathic specialist. Slava feels rather well and continues Vfend therapy.

Update as of April 30, 2010. Based on test results, Slava still has low leukocytes (since last week) – 1.8, as well as low hemoglobin – 77. The doctors are now looking into the reasons for that. Slava is scheduled to go for CT scan and MRI, as well as lumbar puncture in June. His mom is hoping that she will be able to get a quota for free tests.

Update as of June 6, 2010. We managed to get a quota for Slava's examination. His mom asked to express her sincere gratitude to Ekaterina who gave 2,200 rubles for taxi for Slava to travel to the hospital and back. Slava does not eat well. He is underweight and for that reason he was again prescribed enteral nutrition NutriZone as formula. A can of NutriZone lasts him 3 days, and he needs support with buying this nutrition.
In addition, his arm does not work very well. It needs to be exercised. The doctors recommended buying special equipment that costs 10,000 rubles.
Slava also needs to travel to Peterhof once a week to visit osteopathic specialist. The roundtrip in a taxi costs 2,200 rubles (including waiting time). If someone could help Slava with paying for taxi or bring him there in a car, it would be very helpful.

Update as of July 23, 2010. Slava is undergoing a rehabilitation course with osteopathic specialist. He can walk well and is in remission in regards to his primary illness. Slava's family needs help with buying Heptral and Orungal and for the trips to the clinic in St. Petersburg.

Update as of August 30, 2010. About a week ago, Slava started having problems with his vision: "snowflakes" flashing in his eyes. After 2-hour long examination, ophthalmologists concluded that these are delayed effects of the stroke and referred Slava for MRI with contrast. We are now trying to sign up for MRI as soon as possible. Yesterday, Slava had blood tests: in CBC his blood counts had halved, and in biochemistry, liver counts are elevated. Due to low platelets, kinesis sessions had to be canceled (Slava really benefits from them, and in January the doctors recommended 10 more sessions, which would cost us 23,000 rubles).
Slava is running out of Purinethol and also need Orungal (syrup).
We are very grateful to all our supporters and volunteers for their help and support. There are so many of us, but you remember everyone!
Elena, Slava's mom

Update as of October 24, 2010. Slava had a consultation at the Polenov Neurosurgery Research Institute. Neuroophtalmologists (as well as the ophthalmologists of the State Medical University of St. Petersburg) believe that the eye problems are the result of the stroke. Last week Slava had hearing diagnostics, the audiologist made an audiogram based on which he chose some hi-tech hearing devices, but Slava will still have a behind-the-ear hearing aid on the left ear. The hearing aids will be paid for by a charity fund called Shag Navstrechu.
Unfortunately we still need taxi service because Slava has jerks of the left side of his body and at those moments he has difficulty standing (on the average we have 1 or 2 trips per week, the cost is around 4,000 roubles, plus another 3,000 for the taxi back home). Thank you all so much for your help and support!
Elena, Slava's mother

Update as of November 29, 2010. We are very grateful to A Step Forward charity that purchases new hearing aids for Slava, one of which is internal. We are enormously grateful to Maria Slavyanskaya, Advita Fund volunteer and Svetlana from A Step Forward.
Unfortunately, we weren't able to schedule a consultation at Military Medical Academy, as the doctor is on vacation, and Slava still has problems with his vision. He feels rather well and has good blood counts, although he still has issues with his weight and his right side does not move well. In early December we will go for a diagnostic puncture at the clinic (we will still appreciate help with paying for taxi).
Respectfully, Slava's mom

Update as of December 24, 2010. Slava is in remission, takes Purinethol, and feels well.

Update as of March 10, 2011. Slava is in remission, there are no active infection focal points, but there are minimal signs if a chronic GVH reaction. He has problems with his hearing which are being attended to by specialist doctors.

Update as of July 7, 2011. Slava feels well. He is being monitored as an outpatient. Once a week he sees osteopathologist, as his left arm has not recovered yet. He received a quota for planned examinations. During the last hospitalization, he did not have CT of chest because the equipment was out of order.
Slava is on maintenance therapy. He receives Purinethol, Orungal, Biseptol and Finlepsin-retard.
During the last two years, Slava has not gained any weight (he weighs 47 kg with height of 180 cm), and his doctors offered therapy with Megace that is recommended for treatment of cachexia in oncology patients. After three weeks, Slava gained almost 2 kg.
Last year Slava was recovering from a terrible strokem so we did not even think about college, but this time we decided to try. His first test will be on July 8th.
We are enormously grateful to Irina who is helping us with transportation and everyone else helping Slava.
Respectfully, Elena, Slava's mom

Update as of October 12, 2011. Slava is doing well. His eyesight and hearing remain the same, his basic disease is in remission. Follow-up hospitalization is scheduled for November.
The problems with body mass are still there: in June Slava weighed 47.8 kg (with his height of 178 cm). Our hematologist prescribed Megace which Slava was taking from June 12 till August 12. During this time he managed to put on almost 9 kg.
But on August 29 Slava had to stop taking Megace due to a bad coagulogram, and the next day he had no appetite and began to lose weight.
Now Slava is taking Megace under "training conditions" so to speak: three weeks then 3-4 days' break.
The nutritionist suggests Nutrison. Slava also takes Purinethol, Biseptol, Orungal and Finlepsin Retard.
Respectfully,
Elena, Slava's mother

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