Sasha with his sister-donor Nastia

Our family, the Novokreschenovs, lives in Kostomuksha, a town in the republic of Karelia. We have two children, ten-year-old Nastia, our daughter, and Sasha, our son, who was born on March 29, 2005. In fall 2007 we started applying for his daycare admission. Not long before that we noticed that Sasha was slightly limping in the right leg, which developed small bruises. He also started to get tired easily. Sasha's blood tests turned out to be abnormal, and the doctors diagnosed him with acute leukemia.
Sasha and I were referred to the Hematology unit at the Republican hospital in Petrozavodsk. My husband took Sasha's blood and marrow samples to St. Petersburg Pavlov Medical University several times. A more accurate diagnosis was set there: biphenotypical leukemia. With this kind of leukemia bone marrow transplantation is always recommended.
In Petrozavodsk Sasha underwent two chemotherapy blocks within four months. After that he achieved remission. The testing showed that his older sister Nastia is a suitable bone marrow donor for Sasha.
The transplantation is scheduled for February 26, 2008. It will take place in Pavlov Medical University. Due to the transplantation, we have significant upcoming expenses, such as apartment rent near the university, partial pay for the medical tests, and living expenses several months.
We will be grateful to everyone who helps us!

Irina and Mikhail Novokreschenov
Contact phones:
+7 (911) 908-38-61 (Mikhail)
+7 (921) 227-54-75 (Irina)

Medical conclusion

Update as of March 4, 2008. It has been a week since Sasha's transplantation. Everything is proceeding as planned. The doctors allowed Sasha's sister, his donor, to go home to Kostomuksha. Sasha is still in cytopenia, but feels relatively well.

Update as of March 26, 2008. Sasha recovered after transplantation and was discharged for outpatient monitoring. He lives at a rented apartment and feels relatively well.

Update as of April 4, 2008. We are sincerely grateful to Russian Help Fund for buying 7 packages of Vfend (50 mg) and 6.5 packages at 200 mg dosage for Sasha for the total of 250,449 rubles.

Update as of April 18, 2008. Sasha completed planned examination. The test results are normal and he feels well.

Update as of July 6, 2008. Sasha's percentage of donated bone marrow had dropped. His sister who was a donor was called in. Sasha is planned to receive donated lymphocytes.

Update as of July 24, 2008. Today Sasha had a puncture and the results should be ready either tomorrow or on Monday. Two weeks ago he had the first donor lymphocyte infusion. His doctor Natalia Vassilievna told us that Sasha will need several infusions.
Sasha's father

Update as of August 3, 2008. Based on the test results, percentage of donor's bone marrow grew from 50% to 70% after infusion of donor's lymphocytes. Two more infusions are planned.

Update as of August 26, 2008. Sasha is now being monitored by the doctors, as his bone marrow engraftment indicators dropped. He is planned to undergo donor lymphocyte infusion from his sister.

Update as of October 4, 2008. Sasha had lymphocyte infusion again. The percentage of the donor's bone marrow started to grow again. Sasha feels well and grew up quite a bit. He is also starting to talk.

Update as of October 31, 2008. Sasha's condition stabilized. On November 12th he will return home to be monitored by the hematologists in Petrozavodsk.

Update as of November 11, 2008. Sasha completed treatment and returned home.

Update as of November 25, 2008. Our trip home was good. Sasha really missed his sister Nastia. Now our home is always noisy and the toys are spread all over the place, but it feels so good!
We are very grateful to everyone who has been helping us!
Sasha and Irina Novokreschenov

Update as of December 25, 2008. Sasha came for planned testing. The puncture results show that the donor's cell content grew to 80%. Sasha feels well. His liver indicators are a little elevated.

Update as of January 11, 2009. New Sasha's photos

Update as of April 14, 2009 Sasha came for examinations. The results are good, the boy is feeling fine.

Update as of August 19, 2009 Thank God, we are doing well. I am sending a few new pictures.
Respectfully,
Mikhail, Sasha's dad

Update as of October 3, 2009 Sasha had a relapse. He is now undergoing chemotherapy under FLAG protocol in St. Petersburg. Further treatment will be discussed once the results are available.

Update as of October 26, 2009. Unfortunately, Sasha was not able to achieve remission. A decision was made to offer Sasha second transplantation. Nastia, Sasha's sister, who will be his donor, will travel to St. Petersburg for tests, and if everything is well, the conditioning regiment will start after 10 days. Sasha's family urgently needs financial support for living expenses.

Update as of October 26, 2009. Sasha is still receiving anti-relapse chemotherapy. Unfortunately, he also got fungal infection in addition to other complications. Sasha receives Fungizone therapy.

Update as of December 24, 2009. Sasha has recovered after the transplantation. Based on the computed tomography results he was prescribed Vfend.

Update as of January 19, 2010. Sasha fully recovered after transplantation, but since the doctors feel that it may not be sustained, he receives immunotherapy with lymphocytes, interferon, and GM-CSF (colony-stimulating factor) to prevent relapse.

Update as of February 20, 2010. Sasha is soon to start a 3-months' immunotherapy course with Roferon and Neostim. Please help us buy Neostim. Sasha needs 3 vials per week, each one costs 3,500 roubles.

Update as of March 3, 2010. Sasha is in remission. The course of treatment with Roferon and Neostim will last two more months.

Update as of April 3, 2010. Sasha feels rather well. During the school break his sister Nastia traveled to see him. They played very well and happily together. Sasha is continuing immunotherapy and still needs Vfend.

Update as of April 30, 2010. Sasha was taken off Neostim, but he continues Roferon therapy. He is monitored as an outpatient.

Update as of July 14, 2010. Sasha is still monitored as an outpatient. Donor's bone marrow still requires stimulation, but Neostim therapy was postponed temporarily due to heightened transaminase. Sasha is receiving appropriate therapy and feeling well.

Update as of August 6, 2010. Sasha is continuing to take medications to protect his liver function (heptral, Ursofalk and Hepa-Merz), and also visits ophthalmologist and continues therapy on his eyes.
Based on the latest puncture results (as of July 29th), Sasha has 1% of blasts. This is a good result, but he again got some residual illness.

Update as of August 18, 2010. The doctors believe that Sasha has a GVH reaction of the intestinal mucous membranes. The boy has been prescribed immunosuppressive therapy and hormones. Immunosuppression resulted in decreased ALT and AST counts. Sasha should also undergo photopheresis shortly.

Update as of October 6, 2010. The results of the planned tests show complete remission, the short course of hormones helped to overcome GVHD. Sasha will need to have a control EGD.

Update as of October 24, 2010. On October 9 Sasha got into hospital with signs of lung edema. CT and bronchoscopy were performed but the results are not ready yet. He also has problems with his kidneys and blood pressure. Since October 18 Sasha is undergoing photopheresis for the chronic GVH reaction. On October 20 the boy was discharged to the day patient facility.

Update as of November 24, 2010. The Computer tomography shows that the lung condition has improved, but the function of the external breathing has not recovered yet. Sasha still needs to be at the continuous pulmonologist observation. Today he had a second course of photopheresis, prescribed to treat GVHD symptoms. Sasha had a hard time tolerating the course. The biopsy showed disappearance of the mutated gene traces; the minimal residual illness was not discovered.

Update as of December 22, 2010. Sasha has some improvement with his breathing. He is still monitored by pulmonologist and does inhalations with atrovent and pulmicort. Due to GVHD of lungs, we continue Vfend therapy (200 mg/daily). Sasha was installed obturator in his left eye and he gets Oxyal drops. He feels well and cannot wait for the New Year and the presents!
Sasha's mom

Update as of March 28, 2011. Sasha's bilirubin and transaminase counts are getting back to normal, but the treatment course for the liver is continuing. Sasha also had false croup, the situation is now stable but unfortunately the problem with the lungs is still there, his respiratory function is still low.
Sasha's mother

Update as of May 4, 2011. Sasha's liver counts are now normal. He still has lung problems which is why he continues to get Vfend. Sasha is feeling fine both physically and mentally. He attends speech therapy classes and loves the classes organized by the DA studio.

Update as of May 20, 2011. Sasha's mom told us that she lost her cell phone and all the contact numbers with it. Irina's new number in St. Petersburg is +7 (921) 227-54-75.

Update as of May 20, 2011. Sasha will undergo tests for GVHD of lungs (CT scan and external breathing tests). The results of tests will help determine further treatment. Vfend was replaced by Noxafil. Sasha feels well.

Update as of June 4, 2011. Sasha completed examination and there was no signs of GVHD in lungs. The doctors are allowing Sasha go home. He will have control tests in a month. Sasha feels well.

Update as of June 23, 2011. Unfortunately, prior to his departure, Sasha was diagnosed with new lesions in his lungs and he had to stay in St. Petersburg. He was referred for bronchoscopy and had tests for bacterial and fungal infections. It is thought that he has a bacterial infection, but the final diagnosis will be issued after all the tests are completed. Sasha feels rather well and still needs Noxafil.

Update as of September 15, 2011. Sasha still shows signs of fungal infection in lungs. He feels well and based on test results, external breathing function is gradually improving. Noxafil will be needed for the next 6 months. We would like to thank AiF Kind Heart fund for buying eight vials of the drug for Sasha.

Update as of October 3, 2011. We would like to thank AiF-Kind Heart fund for buying 8 packs of Noxafil and 11 packs of Miacalcic for Sasha for the total of 408,000 rubles.

Update as of October 31, 2011. Sasha is being monitored as an outpatient. His blood counts are normal. The doctors are planning to let him go home.

Update as of November 12, 2011. Sasha is doing well and his blood counts are normal. His external breathing is still lower than normal, and for that reason Noxafil is not canceled yet. On Wednesday Sasha will go home to Kostomuksha. Control tests are planned in two months.

Update as of November 29, 2011. Sasha is being followed locally. He feels well, but continues Noxafil therapy.

Update as of December 26, 2011. It is now a beautiful snowy winter weather in Kostamuksha. Every evening Sasha enjoys going with his parents and a sister to slide downhill, make snowmen and throw snowballs. In early January he will come to St. Petersburg for planned tests.
New Sasha's photos

Update as of January 18, 2012. Sasha is at home feeling great, the examination has been rescheduled to a later date.

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