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Hello!
My son Misha was born in October 2009. We eagerly expected him and we love him very much. Misha was always a healthy, happy and curious baby. He started walking and talking very early. In September 2012 our son started complaining about a pain in his leg. We immediately saw a doctor and Misha was hospitalized to Gatchinskaya Central Regional Clinical Hospital, where he was diagnosed with reactive arthritis of the right hip joint. Two weeks later he was released with marked improvement. About a month later Misha started wheezing at night. We called for an ambulance and at the hospital he was diagnosed with acute obstructive bronchitis with "otherwise healthy condition". A week later we went home. Then Misha had a viral infection, after that tonsillitis:
The strangest thing was that with all the health problems he had, his blood work looked normal. We endlessly took our baby for treatments for one thing or another, but his condition got worse and worse. When we called for ambulance yet another time, Misha went straight to intensive care. That's where they suspected leukemia for the first time. Next morning we were transferred to the Gorbacheva Children's Hematology and Transplantation Institute in St. Petersburg. There, to my horror, the diagnosis was confirmed. Misha was diagnosed with acute lymphoblastic leukemia.
Misha is going through chemotherapy right now. He has had 2 cycles already, which has resulted in remission, and four more cycles are planned. However, the doctors have concluded that for long-term results Misha needs a bone marrow transplant. In order to have the transplant done, we need to find an unrelated compatible donor through the International Registry in Germany. The donor search procedure costs 5,000 euros, bone marrow harvesting - another 13,000 euros, and transplant delivery to St. Petersburg - another 2,500 euros. Fortunately, the Russian Help Fund promised to cover stem cell harvesting, but even the remaining amount is astronomic for our family, with two kids and only one working adult. We have no other sources of raising money. Please help us!
Misha is fighting with all his might, and we believe that things will turn out well and that bright future is ahead for our son.

Best regards, Olga


 

Bill for the donor search in Germany
Clinical summary

 

Update as of March 5, 2013. Misha is now in the hospital. The third cycle of chemotherapy is not started yet because of the fungal infection diagnosed recently. It is in Misha's lungs and damaged pancreas. Misha is not feeling well: he has a fever, high pressure, severe nausea, and does not eat. The antifungal therapy includes treatment by Mycamine and Vfend. The primary disease remains in remission.

Update as of March 29, 2013. Misha's condition has gotten significantly better thanks to the antifungal and antibacterial therapy, and a week ago he was transferred to outpatient care. The little boy is receiving a daily treatment of antifungal Cancidas. He is scheduled to receive the third course of chemotherapy targeted to strengthen the remission on April 2nd. We have started the process of a non-relative bone marrow donor search for Misha.

Update as of April 23, 2013. Misha has not been able to complete the third chemotherapy cycle yet, because of his allergy to Asparaginase. At present the boy is recovering at home. It is planned to continue with chemotherapy on April 29 with Methotrexate. Misha continues to take antifungal drugs. He suffers from mucositis and eats very little, however, in general he feels good, runs, plays and has fun with his older brother. A bone marrow donor for the boy has not been found yet.

Update as of May 16, 2013. A donor is found for Mikhail. Bone marrow transplantation is preliminarily scheduled for July. Misha has recently completed a course of chemotherapy with Methotrexate. Control puncture proved remission. CT lung screening showed that Mikhail's lungs are clear, but for prevention of infection he needs to take antifungal medicine before and after transplantation.
Yesterday Mikhail was hospitalized again with a fever due to infection in catheter. It was taken out; antimicrobials were prescribed and his fever has went down. Mikhail feels OK. He likes to play with construction set together with his mother.

Update as of May 23, 2013. Misha had an allergy to asparaginase and Oncaspar (pegasparagase), and he needs a very expensive medication that is not registered in Russia - erwinase (L-asparaginase). The total cost of therapy is almost 1.5 million rubles. Please help!
Bill for the medication
Bone marrow transplant for Misha was scheduled for early July. Exact date is being verified. On May 20th he was discharged from the hospital. His blood counts are normal. Misha is now at home and feels well. He runs, jumps and plays.

Update as of May 31, 2013. Bone marrow transplantation is scheduled for July 4th. Now the boy is undergoing an examination before transplantation. He feels fine. A cycle of chemotherapy with Erwinase is planned shortly.

Update as of June 19, 2013. On June 7, Misha started a cycle of chemotherapy with Erwinase. The boy is treated in a day patient facility, visiting it twice a week. The rest of the time Misha spends at home drawing, playing with clay and his toy cars and playing football with his Dad. Besides Erwinase, Misha is also treated with Purinethol and Metotrexate.

Update as of July 8, 2013. Bone marrow transplantation was performed as planned on 4th July. Blood count did not drop yet, therefore the boy feels well, he is active, plays a lot with his toy cars in a hospital ward. To prevent infection the little boy receives antibacterial, antiviral and antifungal drugs (currently Cancidas) as well as immunosuppressive drugs to prevent GVHD.

Update as of August 5, 2013. Misha has been recovering well after the bone marrow transplant and since August 2 he is monitored as a day patient. His first puncture is scheduled for next week. The boy's blood counts had been normal until yesterday, but now are a bit low. He will be given Octagam infusions to support his immune system.
He doesn't show any signs of GHVD and is taking Cyclosporine, an immunosuppressant. While still in hospital, Misha was given Cancidas to protect him from fungal infections, but now he is back on Vfend.
Misha is feeling well and is rather active: he runs around, draws and plays with his toy cars. When he gets tired, he rests for literally five minutes and then jumps up again and continues with his activities.

Update as of September 3, 2013. Unfortunately control puncture showed donor's bone marrow rejection, and Misha recovered with the own cells. The boy is in remission, but minimal residual disease test showed inconclusive results. It is planned to repeat the examination in a month. Misha's further treatment is being discussed.
The boy is at home now. He feels good. Reduced hemoglobin level does not influence his activity: he plays toy cars with his brother and watches cartoons about Luntik's adventures.
CT showed that Misha's lungs are clean, but he continues taking Vfend for prophylaxis.

Update as of September 16, 2013. The decision was made that Misha should have another bone marrow transplant - this time from one of the parents. Now the boy's mom's and dad's samples are undergoing typing. Misha is staying home in Gatchina; his condition is monitored on an outpatient basis. He is feeling well and remains in remission. Prophylactic administration of antibiotics, antiviral and antifungal agents continues.

Update as of October 17, 2013. After Misha's parents were tested, his mother was found to be the best match. However, since he is now in complete remission, the doctors prefer for him to undergo an unrelated stem cell transplant (Misha has a match from the international bone marrow donor registry).
He is at home in Gatchina and continues to feel well. He is currently receving maintenance chemotherapy in pill form. Vfend was stopped.
On October 12th, Misha turned 4. He had a visit from Luntik, a Russian cartoon character, who brought a balloon bouquet; he also saw a fairy tale play and got a kids' tablet and a cake with cartoon characters. Misha was happy beyond belief.

Update as of November 15, 2013. Misha remains in complete remission, there are no signs of the minimal residual disease. The board of doctors headed by Professor Afanasiev decided to postpone the bone marrow transplantation.
The boy will take medicine according to the maintenance protocol and be tested for minimal residual disease on a regular basis. In case the count starts climbing, Misha's mother's bone marrow will be transplanted.
Misha is at home now in Gatchina. He feels well and takes small doses of Purinethol and Methotrexate.
Misha is very active and it is a tremendous challenge to make him concentrate and learn the letters of alphabet. However, he was very quick in mastering numbers and he can already count to ten.

Update as of February 15, 2014. Misha had fever in January, and antibiotics did not help. The toddler was hospitalized at R. Gorbacheva institute for a double check on identifying lesions in his lungs. Tentative fungal infection was suspected and Mishenka had been prescribed Vfend again. After initiation of therapy, his fever went down, the boy felt better, and was discharged home a week ago.
Leukemia is in remission, and Misha continues to take the medication as prescribed (Purinethol and Methotrexate).

Update as of March 15, 2014. Misha remains at home, in Gatchina. He is receiving maintenance chemotherapy and also Vfend, an antifungal medication. Lung CT scan is planned in the nearest future. Misha was recently ill with a bacterial infection, but it quickly responded to treatment and now the boy is feeling relatively well. Misha stays in an excellent mood. The boy leads an active lifestyle: he roller-skates with his mom and older brother, goes to the movies, and enjoys playing with construction toys and doing puzzles.

Update as of August 28, 2016. In summer 2016 Misha had a scheduled biopsy that showed 11% of blasts in his bone marrow. After evaluation, a new diagnosis was established: myelodysplastic syndrome (Misha remains in remission from leukemia).
By now Misha received two cycles of maintenance therapy with Vidaza, but he also needs another bone marrow transplant for full recovery.
His little sister was typed, but she is only a partial match. Transplantation from an unrelated donor is being planned. Misha is now at home in Gatchina. He recently had a bacterial infection, but he is well now. He is active, and runs and jumps around.

Update as of September 12, 2016. Misha is scheduled for a bone marrow transplant on September 16. Russian Aid Fund paid for the donor search in the international donor registry.
Misha is already in the hospital, receiving pre-transplant chemotherapy with Tepadina; he is tolerating it reasonably well, though his appetite is low because of nausea.
His blood counts are holding up so far, with only his leukocytes falling. Misha receives Vfend to prevent repeat fungal infection.

Update as of September 30, 2016. Misha is recovering after bone marrow transplantation that took place on September 16. His blood counts are now low. The last few days he had persistent fever that does not respond to antibiotics.
The fever may be of immune nature (tests are being done), but as a prophylaxis, Misha is receiving antivirals, anti-fungals, and antibiotics. Overall, Misha is tolerating recovery well, but his appetite is affected by mucositis and he was recently prescribed special nutrition.

Update as of October 20, 2016. Misha has recovered after the bone marrow transplant and was discharged to the outpatient clinic today. The lumbar puncture showed that the blast levels are within norm, though the signs of the disease are still at detectable levels. The doctors hope that with time they will disappear altogether. The bone marrow engraftment is proceeding well, the boy’s blood counts are within norm, but are still unstable. Misha is feeling fairly well and is active. He has no infectious complications, but shows mild signs of skin GVHD, controlled by hormonal creams.

Update as of November 13, 2016. Misha is currently living at home, in a town of Gatchina near St-Petersburg. His parents bring him 2-3 times a week to the Gorbacheva institute in St.-Petersburg for tests and evaluation.
His blood counts are good. Next week he will have a control puncture. Misha is feeling fine, although sometimes he gets a mild fever. His skin GVHD is getting worse; the doctors have decided to supplement immunosuppressants and skin creams with hormones. At least he now has a really good appetite.
Misha is also getting immunoglobulin injections to strengthen his immune system. They are probably the reason why he managed to stay healthy even though both his siblings have a cold.

Update as of December 6, 2016. Scheduled November puncture showed good results; disease was dormant, however, recently Misha's blood counts had dropped, and it was decided to repeat a test. Myelogram was within normal limits; but detailed results are available yet. Doctors did not rule out the possibility that blood count drop was caused by hormones that Misha took to control GVHD. His skin GVHD manifests itself only slightly currently, so hormones were canceled, but immunosuppressive therapy is continuing for now. Therapy with immunoglobulins and Vfend continues to prevent infections.
Misha is still at home in Gatchina. He feels quite well. Lately he became more energetic: he goes for walks with his brother and plays with his sister.

Update as of December 27, 2016. A repeat puncture proved that Misha was in remission and that donor bone marrow was engrafting well. His blood counts were a bit lower and unstable, but they did not drop considerably. GVHD did not manifest itself any more. The boy continued taking Vfend as a precaution.
At present Misha is at home in Gatchina. He is looking forward to the upcoming holidays, because he loves them very much. Misha has already got a lot of presents from various organizations and charities, but he will find one more, an RC-airplane from his parents, under the Christmas tree.

Update as of January 27, 2017. Misha is still at home in Gatchina. Twice a week he travels with his mom to St. Petersburg for tests. The main blood counts are now normal, and GVHD has been dormant. However, the tests show high eosinophil count, which indicates presence of GVHD.
Misha's dosage of immunosuppressive drug Prograf has been increased. He continues therapy with Vfend.
Misha feels rather well, he plays with clay and enjoys his younger sister's company - they are especially active at night, before going to bed.

Update as of February 22, 2017. Misha remains at home in Gatchina, and he comes for tests in St. Petersburg once a week. His blood counts are normal, but the tests continue to show residual GVHD, and Misha stays on immunosuppressive drug Prograf.
Vfend will be cancelled soon.
Misha plays with clay, draws, plays with his sister and goes out for sledding - a very active lifestyle, overall. His legs get tired at times from too much action.

Update as of March 20, 2017. Misha had 180th day post-transplant biopsy that confirmed remission. He recently had an inactivation of skin GVHD, but it was quickly controlled with immunosuppressive drugs. Misha was taken off Vfend. He is still at home in Gatchina and feels well and energetic. Just recently, while snow was still on the ground, Misha went tubing, and now he just goes for walks with his mom and sister to the park and playground.

Update as of June 17, 2017. Misha is currently at home in Gatchina, he is feeling well, playing, walking, and getting ready to school. This year he will start first grade; he will be homeschooled to start with. The boy recently went for a vision checkup; he was diagnosed with astigmatism and was prescribed glasses.
Misha goes to St. Petersburg once a week for blood tests; most of his blood counts are within norm, except for slightly low platelet counts. The boy continues to exhibit mild chronic skin GVHD and recently also developed GVHD of the mucous membrane of the eye. In addition to immunosuppressants, he is treated with hormone creams and eye drops. Misha's Prograf is currently paid for by AdVita Fund; later on he will start receiving it through his local medical center free of charge.

Update as of September 14, 2018. Misha is feeling quite well, the doctors took his veno-occlusive disease under control. Misha has started eating on his own. His low platelet counts led to frequent bleeding, but that was also resolved. His blood counts are increasing now, including platelets, and he no longer bleeds. Sometimes he gets fevers.
Misha is diligently studying with all of his tutors, following the second grade program. He loves math. Recently he was allowed to start taking walks outside. Misha reads and does crafts. Recently he put together a Lego helicopter.

Update as of October 5, 2018. Misha is currently monitored as an outpatient. He will soon undergo a bone marrow biopsy, on day 60 after the bone marrow transplant. His blood tests are within norm. He had high Sirolimus concentration in his blood, so the doctors adjusted the dose.
Misha feels well and is in a good mood. He takes school classes at the hospital, though they tire him out. At home, Misha plays with Legos and puts together cardboard ships and planes. He enjoys doing homework, likes math and "the world around us" class.

 

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