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

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