Hello!
My name is Sasha Obertyuk. I was studying at the 11th grade and had big plans for the future. I was going to school, attended basketball competitions, played at the Game Club, went to dance clubs, and had many friends and many dreams… Ahead of me were exit tests and enrollment into college. It seemed I had enough time for everything. But then came April 2008. I had difficulty breathing. Then an operation. I thought I still could catch up with everything. But at first I needed to recover. This is no big deal, I am still young and strong. I was studying the questions, making myself ready for the exit tests. I believed I would dance waltz at the graduation ball. There was less and less time until the Last Bell, but I was still sick. It all turned out much worse than I thought.
I needed long-term therapy. I felt empty. Empty in my heart and my head. There was nothing left. What happened then? My friends called and wrote me letters. I missed tests and graduation. Meanwhile I was undergoing the first chemotherapy course. My mouth, throat, stomach and head were aching. This was nothing compared to the pain in my soul…
The life goes on. And I am ready to fight for it. I believe and dream despite my illness. I will pass exams and will enroll into college in the future. Also, I will have a family, and my parents will become grandparents one day!
Please help my dreams come true!
Currently I need very expensive medications.

Contact phone:
+7 (903) 093-52-03 (Sasha)

Medical report
Epicrisis
Medical conclusion
Bill for the donor search in Germany

Update as of October 4, 2008. Sasha underwent the first chemotherapy course at the Hematology and Transfusiology Research Institute. Once the Institute closed for airing-out, Sasha was transferred to BMT clinic at State Medical University.
By now, Sasha completed the second chemotherapy course and he is now recovering. He feels relatively well and has the medications he needs. The next chemotherapy course will take place in about two weeks.

Update as of January 13, 2009. Sasha completed two large chemotherapy cycles out of four and was allowed to go home for two weeks. After a course of Noxafil he shows no traces of aspergillosis. Sasha feels relatively well.

Update as of June 3, 2009. Sasha completed main course of treatment and returned home to Kaliningrad. We are enormously grateful to everyone who helped Sasha!

Update as of January 13, 2010. Unfortunately, Sasha had a relapse. He is now undergoing anti-relapse chemotherapy under FLAG protocol at R. Gorbacheva Pediatric Hematology and Transplantology Institute. A decision was made to initiate search for unrelated donor at the international registry. We need to raise 15,000 euros for the search and 2,500 euros for delivery of transplant.

Update as of February 3, 2010. Sasha achieved remission after the first FLAG course. He must now repeat the FLAG course for which he needs Fludara (2 bottles). Please help buy it!

Update as of February 10, 2010. On February 9th, Sasha started a second course under FLAG protocol. He feels well.

Update as of February 20, 2010. A donor was found for Sasha! Many thanks to all supporters who helped raise over a half of the sum, and the Podari Zhizn fund which is ready to start raising money for Sasha too, because there is almost no time left.

Update as of March 26, 2010. The money for transplantation was raised, but the procedure was postponed due to donor's illness. Sasha is in a great mood and he feels well too.

Update as of March 30, 2010. Unfortunately, based on test results, Sasha has blasts again. He urgently needs to undergo therapy with Atriance. Sasha needs 9 gm of this medication, which will cost hundreds of thousands of rubles. We are re-starting raising money for Sasha.
Medical conclusion

Update as of April 3, 2010. The therapy with Atriance will start as soon as this drug will be delivered and paid for. Sasha feels well.

Update as of April 16, 2010. Atriance for Sasha was purchased out of donations sent to all patients. The course of treatment will start on April 16th. Bone marrow transplantation is scheduled for May 6th. Sasha feels well.

Update as of April 18, 2010. We would like to express our heartfelt gratitude to everyone who showed us that they cared for Sasha and helped him stand up to the challenges that seemed insurmountable. Thank you for not leaving us alone to face our troubles, thank you for your kindness and humanity. It is such a joy to know that there are compassionate and generous people nearby who always remember us and support us daily with warmth and good wishes.
Our dear friends, you gave us strength in our fight to cure our son, you gave us faith and hope and proved to us that there are many more good people out there than we knew before.
We are enormously grateful and thankful to N. Tsukanov, mayor of Gusev, for his understanding and significant financial support. We are thanking AdVita Fund for offering their help to the needy and desperate people at the low points in their lives, and for doing everything possible and impossible to save lives.
We are sincerely grateful to the doctors with their amazingly kind and sensitive hearts who give their personal warmth, knowledge, skills and affection to our son. We still face uncertainty and many days of fight and waiting for a miracle ahead. But we have faith! Our deep gratitude to everyone and wishing you the most important thing in life - good health.
Gratefully,
Obertyuk family

Update as of April 30, 2010. Sasha started pre-transplantation chemotherapy.

Update as of May 19, 2010. Sasha is recovering after transplantation. His blood counts plummeted, and leukocyte count is 0.2. Sasha has mucositis. He said he is in bed with a sick mouth. Sasha still needs Vfend.

Update as of July 15, 2010. It has been more than two months since transplantation. Sasha is gradually recovering. He is now strong enough to go out. He was discharged for outpatient monitoring. Every day he comes to the hospital to get medications administered. He takes Vfend and also needs immunoglobulin. Based on the latest test results, donor's cells engrafted at 95%.
We are concerned about Sasha's legs going numb and his low leukocytes. But doctors keep him under control.
Sasha's mom

Update as of August 2, 2010. Sasha feels well. He is finally starting to gain weight and already added 3 kg despite a diet. His hair is growing - he will be very hairy soon!
Sasha still goes to the clinic for IV infusions daily. He receives an antibiotics, Cymeven, and gradually his cyclosporine doses are decreasing with the goal of stopping immunosuppressive therapy eventually.
Sasha takes Vfend, a package of which lasts him a week. We are thankful to AdVita fund for helping us get this medication - Sasha vitally needs it.
The pulmonologist decided to continue therapy for lungs with Pulmicort and Hemomycin. Control CT scan is scheduled for August 9th. Sasha is full of positive expectations!
Sasha's mom

Update as of August 25, 2010. Unfortunately, CT scan results show that Sasha has two lesions with contrast uptake. Radiation therapy is being discussed.

Update as of September 2, 2010. Sasha responded very well to radiation and the tumor shrank significantly. However, during radiation therapy, cytomegalovirus reactivated. Sasha needs Foscarnet, a drug that is not available in Russia. Overall, he feels well.
Sasha is receiving radiation therapy based on guarantee letter from AdVita fund. He was billed 19,000 rubles.

Update as of September 30, 2010. Sasha got sick with bronchialitis. Radiation was stopped temporarily. He has been having fever for more than 2 weeks. Based on the last ultrasound study, the lymph node is not enlarged.
Sasha still takes Vfend and other medications prescribed by pulmonologist.

Update as of December 3, 2010. Sasha is continuing to visit the hospital. He goes for blood tests, various examinations and IVs. On November 21 he had control CT scan. His lungs are clear and lymph nodes are not enlarged. On November 24th Sasha had planned donor's lymphocyte infusion. He receives antibiotics and Vfend.

Update as of February 15, 2011. After the tests (ultrasound and kidney CT), new lymph nodes were discovered. Sasha still takes Vfend. Further treatment is under discussion.
Sasha's mom

Update as of March 10, 2011. According to abdominal CT, Sasha has hepatosplenomegaly, lesions in both kidneys, retroperitoneal lymphadenopathy, and small concrements in right kidney. He had a consultation with Prof. B. Afanasiev.
On March 2, Sasha started anti-relapse chemotherapy. Afterwards, donor's lymphocyte infusion is planned. Since stored lymphocytes are running out, we may need to ask the donor in Germany for help again.
Sasha is staying positive and hoping for the best.
New Sasha's photos

Update as of March 28, 2011. Examinations showed that part of the tumors in his kidneys has disappeared after the chemotherapy. Sasha has a fever due to fungal infection. He is administered Cansidas and Vfend.

Update as of April 10, 2011. Donor's lymphocytes for Sasha were ordered. Infusion is planned for April 28. Sasha needs 2,500 euros to pay for delivery of transplant. He also needs to continue Vfend therapy.

Update as of May 11, 2011. Sasha received a bill for donor's lymphocytes.

Update as of May 13, 2011. Sasha underwent another cycle of chemotherapy. After a short break he will resume chemotherapy. Finally, his fever went away. On May 28th we expect donor's lymphocyte infusion to take place. Sasha has a difficulty walking due to progressive neuropathy. He does not want to use wheelchair and tries to use crutches. Based on PET imaging, he has no areas with increased uptake of contrast in his body. Sasha is continuing therapy with antibiotics and Vfend.
We are very thankful to everyone who is supporting Sasha emotionally and financially. Thank you very much for your kind words and offers of help.
Sasha's mom

Update as of May 26, 2011. After the last chemotherapy cycle, Sasha's blood counts plummeted. Due to low leukocyte count, his pancreatitis and cholecystitis worsened. He also has signs of infection in lungs. Sasha's leg got swollen and it hurts due to infection of soft tissues. Donor's lymphocyte infusion was postponed, as the donor broke his leg and is now being treated.

Update as of June 7, 2011. On June 4th Sasha started having seizures and he lost consciousness. He was urgently transferred to intensive care. On June 4-5 he was in a critical condition. On June 6th Sasha woke up, and although it is hard for him to move, he can already speak and understand everything. He receives all medications intravenously. Sasha needs Vfend for infusions.
Sasha's mom

Update as of June 9, 2011. Sasha was moved from intensive care unit to the room. He is stable and feels rather well. After a few days without eating, he is very hungry. He moves around slowly, using crutches.
Sasha had a brain CT scan and everything is well. The reason for the latest accident is not yet understood.
We are very grateful to AdVita fund for Vfend.
Sasha's mom

Update as of August 31, 2011. Sasha is now at home where he is undergoing maintenance therapy under the protocol. Once a week he goes for tests at the hospital. He can move around slowly with crutches. Sasha still has neuropathy, febrile fever, and problems with vision in his left eye. Vfend is still needed.
Sasha's mom

Update as of September 9, 2011. Sasha is at home. He is receiving maintenance chemotherapy and takes antiviral drugs. He does not feel very well.
Sasha's mom

Update as of October 3, 2011. We would like to thank AiF-Kind Heart fund for buying 4 packs of Vfend for Sasha for the total of 118,000 rubles.

Update as of October 31, 2011. Sasha came to St. Petersburg for treatment and received donor's lymphocyte infusions. Based on control CT scan, he has no progression, although he still has lesions in his kidneys. He is planned to have repeat donor's lymphocyte infusions and roncoleukin.

Update as of December 18, 2011. Based on the last CT scan, Sasha still has lesions on both kidneys and several lesions in his lungs. On December 6th he started chemotherapy. On the 4th day of chemo, his condition worsened: he had acute kidney failure and toxic hepatitis. By now, blood biochemistry had improved, although Sasha still has fatigue, neuropathy, dizziness and unstable blood pressure. Sasha is optimistic, as usual, and he makes plans for the future.
Irena, Sasha's mom

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