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Hello!
We live at Far East, in a village of Konstantinovka in Konstantinovsky district, which is around 100 km away from Blagoveschensk. Our son Maxim is 14 years old. First time he fell sick in December 2009, when he was diagnosed with acute lymphoblastic leukemia. Maxim was treated in Blagoveschensk. He underwent chemotherapy with complications such as toxic hepatitis and cardiac malfunction. We all kept praying and believed in a miracle that Maxim will overcome all obstacles and will fully recover. Treatment lasted for 2 years and it started looking like all difficulties were left behind and Maxim began regaining his strength little by little. He wanted to live his life to the fullest: go to school with his friends, play sports, ride a bike, play football and go fishing.
In September 2012, or 8 months after treatment was over, Maxim was allowed to attend school classes. He was over the moon! But in early October our son had an acute respiratory disease and two weeks later complete blood count revealed presence of blasts. On October 22nd we heard the word "relapse". We could not believe it, as it seemed that all that nightmare was already behind us. It was so scary and painful to relive it again.
We could not get treatment in Blagoveschensk as there were no doctors who could treat relapses. We had to go to Saint Petersburg. Our son was admitted to a leukemia chemotherapy department at Children's Hospital #1. Maxim receives high-dose chemotherapy and he has some bad side effects, so almost all the time he has to stay at a sterile room. He was not allowed to leave the hospital for the last 6 months to visit his uncle who lives in Saint Petersburg. Maxim's father and our older daughter stayed at Far East. My husband is trying to earn money to support us and pay for medications, but unfortunately, his salary is not high enough. I am constantly at the hospital with our son and I am also expecting a baby.
Maxim urgently requires bone marrow transplantation. His sister did not match to be his donor. We are not able to pay for unrelated donor search at International Registry. We can't raise 18,000 euros - this is the cost of the procedure.
We are asking kind and compassionate people to help us!

Respectfully,
Olga, Maxim's mother
Contact phone:
+ 7 (911) 194-40-68
(Olga, Maxim's mother, St. Petersburg)


 

Bill for the donor search in Germany
Clinical summary

 

Update as of May 31, 2013. AdVita fund transferred 5,000 euros for bone marrow donor registry as a partial payment for search for Maxim. The search was initiated.

Update as of July 22, 2013. Unfortunately, Maxim's health condition does not allow waiting for an unrelated donor to be found. A decision was made to perform haploidentical bone marrow transplantation from his father.
The search in the International register was stopped, and the funds raised will be used to buy medications after the transplantation.
Currently, Maxim is recovering after a high-dose chemotherapy that he had in Children's City Hospital #1, and he feels satisfactorily.

Update as of August 5, 2013. While it was still active, the search in the international donor registry identified a partially compatible donor. Maxim is currently undergoing evaluation.
We are still waiting for the results of minimal residual disease testing, but the puncture suggested that Maxim is in remission. Therefore the doctors are considering the possibility of an unrelated-donor bone marrow transplant.
The boy has recovered from the high-dose chemo he had been administered at the Children City Hospital #1 and he is feeling much better now. He remains in hospital, but is now allowed walks outdoors.
Maxim will be transferred to the Gorbacheva institute after the transplant decision is made.

Update as of September 4, 2013. Based on the results of the cytogenetic study the doctors decided to proceed with an unrelated bone marrow transplant. The procedure is scheduled for September 24th. The boy underwent a round of Vepeside chemotherapy treatment to support remission. At the moment, Maxim's blood counts are low, but he still feels well overall. Maxim is at the Municipal Children's Hospital #1, undergoing a checkup. Next week he will be transferred to Gorbacheva Institute to undergo pre-transplant chemotherapy.

Update as of September 23, 2013. Maxim is currently undergoing pre-transplantation chemotherapy at the Gorbacheva Institute, and is doing well. The bone marrow transplantation surgery from a partially compatible donor is planned for September 25.

Update as of October 4, 2013. Maxim had the bone marrow transplantation performed on September 25 as planned. At present the boy is recovering. His condition is satisfactory, but he is suffering from nausea and has no appetite. Maxim also has trouble breathing. He is to have an X-ray and ultrasound of the heart.

Update as of October 22, 2013. Maxim has recovered after the bone marrow transplantation, and his blood counts returned to normal range. The first puncture has showed remission. The donor bone marrow engraftment test is still in process.
There are no visible GVHD manifestations. In the evenings the boy experiences 38C fever, and antibiotics have been introduced in order to prevent infections. Maxim feels quite well, he doesn't have dyspnea anymore, X-ray and ultrasound of the heart showed normal results.
Strength and appetite are coming back to the boy, he enjoys eating recently allowed yogurts and fruits, goes for walks, and trains with the stationary bicycle to develop his muscles.

Update as of November 22, 2013. Maxim recovered after the bone marrow transplant and a month ago the doctors discharged him to continue observation on an outpatient basis. The lumbar puncture showed remission, the donor bone marrow fully engrafted, the minimal residual disease test is negative. Due to high risk of relapse Maxim will receive a transfusion of donor lymphocytes on November 25th.
The boy recently contracted a bacterial infection with high fever, but quickly recovered with the help of antibiotics. Currently Maxim is having issues with appetite, but overall he's not feeling too bad, and is studying with tutors at home in order not to fall back in school (he is currently in 8th grade). He misses his friends at home in Konstantinovka. Of course, they stay in touch via Skype, but that's not enough.

Update as of December 16, 2013. On November 25 Maxim had an infusion of donor lymphocytes. The boy's condition is monitored at the day patient facility. He is feeling ok, and his blood counts are normal. Maxim gets tired more than usual but otherwise nothing is troubling him. There are no signs of the GVH reaction so far. The follow-up puncture is planned for December 25 or 26.

Update as of January 13, 2014. Fortunately, December biopsy showed that Maxim is in complete remission and there are no signs of minimal residual disease. Recently, he presented with first signs of skin GVHD and was prescribed with Advantan cream (Maxim is not taking any immunosuppressants now).
The boy is monitored in an outpatient clinic and regularly goes there for laboratory tests. He is feeling quite well. Maxim spent New Year's in St. Petersburg with his mom, dad and little sister. He enjoys going for a walk, but does not want to go to school at all: he says he's had enough of it.

Update as of February 11, 2014. Maxim is still monitored as a day patient. He is feeling fine although a bit weak. His main blood counts are normal, but the liver function tests are slightly elevated and therefore he is given Heptral. Minor signs of skin GVHD are controlled with Advantan. He is scheduled for another puncture. Maxim is home-schooled. He goes for walks, watches TV and plays on-line games with his classmates.

Update as of March 14, 2014. Maxim is being monitored as an outpatient; he feels rather well, with occasional complaints of fatigue. The control biopsy has been rescheduled for mid-April.
Basic blood counts are within norm, although liver enzymes remain slightly elevated - Maxim continues to receive hepatoprotectors. Mild skin GVHD is controlled with topical steroids.
The boy is home schooled by visiting teachers; he interacts with his friends from the home town of Konstantinovka via the Internet.

Update as of April 10, 2014. A puncture from March 31 showed that Maxim remained in complete remission, but in doctors opinion the risk of recurrent disease is still high. It is planned to administer another donor lymphocyte infusion. At present Maxim still has mild skin GVHD. The boy is under the care of doctors from the day patient facility. His blood count is good. Recently Maxim had a viral infection, but now he feels rather well and he continues his studies via Internet.

Update as of June 23, 2014. A new examination has confirmed complete remission for leukemia and doctors soon plan to release Maxim to go back home to the Far East. The boy is happy: during his recovery he really missed his family and friends.
Maxim feels well, hormonal creams are easily dealing with skin GVHD symptoms. The boy will have to return to Petersburg for examination in September, a year after his bone marrow transplant.

Update as of November 23, 2016. On October 29th Maxim came to St. Petersburg for evaluation: it has been 3 years since bone marrow transplant. Based on biopsy results, he remains in complete remission. His blood counts are normal.
However, shortly before his trip, Maxim was found to have a lesion on his right leg. He was operated in Blagoveschensk on October 20th. The material was brought to St. Petersburg and tested in Mechnikov Institute where it was found to have sarcoma cells.
Maxim is now undergoing additional tests and will have CT and MRI in the next few days. On October 28th he will be hospitalized at Gorbacheva Institute for chemotherapy.
Maxim feels well and is ready to fight. He is much supported by regular calls from his friends.

Update as of December 9, 2016. Maxim finished the first chemotherapy cycle. His blood counts have dropped. He will have the second cycle followed by evaluation, results of which will help determine further treatment.
Maxim feels rather well and goes out for walks.

 

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