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Another Anton's photo

Hello!
Trouble came to our family all of a sudden. Our son Anton often had colds. In the spring he had his adenoids removed. It was a difficult decision for us which it took us a long time to take. But after the surgery the number of colds did in fact go down.
In the summer our entire family went on a long awaited vacation trip. In September it was back to everyday life, and we started getting ready for kindergarten. There was a number of standard medical tests we had to have done. Anton had his blood taken and... (who could ever believe that?!) there were cancer cells in his blood. Repeat test confirmed that it was true. The diagnosis came out of the blue: leukemia!
Anton has been very active and happy all through the summer he had been so looking forward to seeing real mountains (it was Kyrgyztan we went to). He never even got one cold during the summer and we were so happy about it. No one could ever suspect that such a terrible thing could happen.
The next day after the blood test was done we already were at the hematology unit of the Regional Children's Hospital of Nizhnevartovsk (360 km from the town of Pyt-Yakh). We still refused to believe our son was sick and kept hoping it was all a mistake. Anton was cheerful and happy as always. But the bone marrow puncture results stated: acute lymphoblastic leukemia.
The treatment course began. A 36-days' induction. The doctors were trying to cheer us up by saying it was a common form of leukemia and Anton would soon be healthy again and go home. We put up with the fact. And then came another blow! The results of a cytogenetic analysis testified to a genetic defect Philadelphia chromosome. Which means that Anton needs a bone marrow transplantation. The doctors did not expect such a turn either. After that Anton was administered a high dose chemotherapy protocol.
Anton is 4 years old, but he is very strong and patient. No matter how bad he feels, when asked "How're you?" he always says that he is fine! Anton is a remarkable child, he is bright and warm like the sun. He is very kind, sociable, tender, loving, cheerful and caring. He can never hurt anyone. Anton is very intelligent and extremely reasonable for his age. He loves logical games, drawing and making gifts for his mom and dad. Anton is very artistic and sincere. His dream now is to recover and come back home as soon as possible. When he grows up he wants to become a priest and have a big house and farm where he is going to work hard.
When we found out that Anton was to have a bone marrow transplantation and how much that would cost, our friends, acquaintances and relatives began to actively look for money. We created a website entitled "I will live" for Anton where I then kept a diary about Anton's condition. Our town is very small, and almost everyone was helping us. We made a partial payment to the Stefan Morsch fund, part of the money was used to pay for Anton's treatment, airplane tickets to St. Petersburg and accommodation in St. Petersburg before the BMT. The Podari Zhizn fund paid the lacking sum. We are so grateful to them for that!
A donor for Anton was found within three months. We believe that everything is going to be fine. Anton does not know yet that he is in for a surgery, that word really scares him. That is why we tell him that we came to St. Petersburg to recover for good. BMT is scheduled for May 20, 2010 and is going to take place at the Raisa Gorbacheva Institute of Children's Hematology and Transplantology.
We are a common family. Anton has an elder brother, his father is a senior puchasing engineer, and it is his salary alone that our family lives on now. Please help us pay for accommodation and acquire expensive drugs which all patients need after the transplantation (Vfend 30,000 roubles, Intraglobin 9,000 roubles per bottle, etc.). Thank you all for helping our son go back home healthy!

Respectfully,
Sergei and Irina Gasnikov


 

Update as of May 20, 2010. Anton is at the Children's Hematology and Transplantology Institute, he is past pre-transplantation chemotherapy and his blood counts have fallen. Transplantation is scheduled for May 21.

Update as of June 24, 2010. Anton underwent transplantation on schedule. He is for now at the clinic, under the doctors' watch. He feels well and is in a good mood.

Update as of August 18, 2010. Anton is feeling fine, blood counts are normal, he is now in day hospital. He began learning English with the help of volunteers and is doing well.

Update as of October 6, 2010. Anton fells well, there are no signs of GVHD and infection, now he is gradually is taken off cyclosporine and will have control tests soon. If nothing concerning would be discovered, Anton would be able to go home.

Update as of October 19, 2010. Based on results of control tests, remission was confirmed, but minimal residual disease was discovered (it means that a minimal number of tumor cells is still present in the body). Donor's lymphocyte infusion and immunotherapy are planned. Anton's return home will be postponed. He feels well.

Update as of November 23, 2010. Anton had a biopsy last week, we are waiting for the results to see how effective the transfusion of donor's lymphocytes and Gleevec was. Anton feels well. The future treatment depends on the biopsy results.
Anton's mother

Update as of February 3, 2011. Based on the results of last puncture, no minimal residual disease was seen. Although remission is confirmed, the doctors are not discharging Anton yet. He is being monitored at R. Gorbacheva Pediatric Hematology & Transplantology Institute where he receives Gleevec and Ciprinol. He feels well.

Update as of March 28, 2011. Anton was allowed to go home for two weeks. The boy has now returned to the clinic for an examination. He feels fine.

Update as of May 20, 2011. Anton is monitored as an outpatient. He feels great. To prevent a relapse (six months ago, minimal residual disease was found), Antosha takes Gleevec and two days ago he had donor's lymphocyte infusion.

Update as of April 20, 2012. Hello! Based on planned tests that Antosha did in March, he is fortunately in complete remission and has complete donor's chimerism. Every two months we undergo an evaluation at R. Gorbacheva Institute of Pediatric Hematology and Transplantology.
Anton does chess at the Children's Arts Center, sings at the theater choir and attends an educational preschool group, as he is due to start school this year. Antosha is excited about starting the first grade and looks forward to it. He enjoys performing at concerts and tournaments.
Recently Antoshka, among other patients of our dear fund, was lucky enough to lead the "Zenit" football team onto the field before the match! My sincere thank-you goes to the AdVita team for letting us see and learn so much and experience so many joyful moments! Thanks to you, we manage to forget why we are in St. Petersburg in the first place Our deepest gratitude for your kind hearts, caring attitude and marvelous work!
Irina, Anton's mom

Update as of August 23, 2012. On September 1 Antosha is starting 1st grade!

Update as of May 17, 2013. Late in April, Anton got high temperature, then blood test revealed very high leukocytes level and the punction showed there was a relapse: 98% blasts in his bone marrow. High dose anti-relapse chemotherapy according to FLAG protocol in R. Gorbacheva Institute made this level drop to 23%.
One more therapy block like that is planned, and then there should be bone marrow transplantation. Most likely, one of Anton's parents will become his donor.
In addition, the doctors suspect fungal infection, and the boy is receiving Ampholip.
Though his blood counts are very low now, Anton feels OK and enjoys playing with his friends at the unit.
New Anton's photos

Update as of June 11, 2013. Anton has completed the second course of anti-relapse chemotherapy following FLAG protocol. He is currently recovering at home. He developed neurological complications after this course (hand tremor, leg pain) and has been prescribed Zometa. He may have fungal infection in his lungs and sinuses. He is currently on Vfend. Next week he is scheduled for puncture and another CT. Anton is feeling ok. He tries to remain cheerful and spend more time at home with his toys.

Update as of July 1, 2013. Fortunately, Anton could achieve remission after the second high-dose chemotherapy cycle. Unrelated bone marrow transplantation is being considered, and an inquiry regarding the second stem cell harvesting from Anton's donor has been sent to S. Morsch International Registry.
Anton is being followed as a day patient and is administered maintenance chemotherapy with Sprycel in tablet form. Based on the second CT scan, there are no fungal lesions; however, Anton continues to take Vfend for preventive purposes. The therapy with Zometa has been effective: Anton has less pain in his legs than before, but he stumbles over them while running. Antosha's blood counts are gradually getting back to normal, though his protein count still remains very low, therefore he receives IV-drip infusions with Albumin.
Anton feels rather well. He plays and reads books. Yesterday he visited Vyborg with his parents. Anton loves travelling and dreams of having his catheter removed so that he can go on longer trips - to London, for instance, where he has already been.

Update as of July 15, 2013. Unfortunately, the re-harvesting of stem cells from Antosha's donor is impossible, and he was recommended to continue maintenance treatment with Sprycel. Anton is now at home, feeling rather well, and he is in remission.

Update as of August 16, 2013. Anton continues treatment with Sprycel at day hospital; his blood counts are normal. Puncture confirmed remission, but cytogenetic analysis results are not ready yet.
Sometimes Antosha complains of pain in his arms and legs, but overall he feels rather well. He is lively, positive and is looking forward to come back to school, so he works on brushing up the multiplication table.
The boy's stable condition allowed the doctors to let him travel to Hungary and Montenegro with his parents and brother. The family has been planning this trip for a whole year.

Update as of September 23, 2013. Anton is being observed at the Gorbacheva Institute, his blood work is done twice a week and all indicators are currently normal. Cytogenetic analysis showed absence of genetic damage. His Sprycel therapy is ongoing. The Russian Help Fund is providing this treatment.
Antosha is feeling well, he has started second grade, although unfortunately not at school but at home.

Update as of December 4, 2013. The puncture confirmed that Anton is in remission, and the minimal residual disease test was negative. Anton continues taking Sprycel. Antifungal drugs cancellation is considered, but Anton still takes Vfend for now. From time to time, the boy gets pains in his legs and is given Zometa.
Currently, Anton has a bacterial infection, but he is already getting better again. He had to discontinue his studies at school during his illness and he is very upset by that: the boy is an exemplary student, he finished the half-year with only excellent grades. And recently, Anton took the first place in the reading competition at a district festival.

Update as of April 2, 2014. Unfortunately, Anton had a relapse, but the chemo worked and the MRI on March, 10 showed no further lesions. The boy is administered chemo every two weeks and is taking high doses of Sprycel. He will also need to have radiation therapy to prevent another relapse.
Anton is feeling better and looks a bit happier. He no longer has headaches. Yesterday he went back to school after spring break: his results for the previous term are straight As!

Update as of July 25, 2014. Anton is still in remission. He is monitored at Gorbacheva Institute. He is taking Sprycel and goes for testing every two weeks. He is also getting maintenance chemo and IVIG on a monthly basis. His next treatment is scheduled for August 11. Anton is feeling fine, he is as bright-eyed and happy as ever, but is disappointed that he is stuck in the city for the whole summer.

Update as of August 17, 2015. Anton remains in remission for leukemia and CNS leukemia, and he continues maintenance therapy with Sprycel. Every three months he receives immunoglobulins to support his body's defense mechanisms. Anton's blood counts are good; the next set of tests is scheduled for September.
Anton is feeling great; he is an avid reader of Astrid Lindgren and Mark Twain. This summer Anton traveled to Moscow for the World Children's Winners Games, where he took second place in chess and third in soccer as part of the Russian team.

Update as of February 8, 2016. Unfortunately, Anton was diagnosed with CNS leukemia in December. His bone marrow aspirations indicate that he is in remission, however the chromosomal abnormality (Philadelphia chromosome) has been detected once again.
Up until recently, he was receiving chemotherapy through a lumbar puncture on a weekly basis. He only receives chemotherapy once a fortnight now. He also receives a high dose of Sprycel.
He is not feeling very well at moment. He is worried about the pains in his legs, which are caused by polyneuropathy. He is undergoing treatment for this.
Anton is able to continue his studies, since his treatment is carried out in an outpatient setting. He has one to one classes with his teacher.

Update as of March 14, 2016. Anton is continuing the same treatment regiment as before: elevated doses of Sprycel and a lumbar puncture with chemotherapy injections once every 2 weeks. Recently he is not taking the treatments so well due to the toxicity of the drugs. He has nausea and dizziness.
Anton does not always feel strong enough to study but he tries to study at least twice a week.
A control puncture is planned for tomorrow - it may help understanding whether the chromosomal damage has been corrected.

Update as of June 22, 2016. June's lumbar puncture confirmed remission; the next series of tests are scheduled for August. Until then Anton will continue maintenance treatments with Sprycel and lumbar punctures to prevent CNS leukemia. The boy is feeling alright. Looks like he'll have to spend the summer in the city; the treatment plan doesn't contain any substantial breaks.

Update as of February 5, 2018. Anton continues taking Sprycel. He is living and studying in St. Petersburg. Anton took an interest in chess. His family is now re-applying for receipt of medications in St. Petersburg. This takes time and Anton will not be able to receive medications from government for a period of time.
Anton currently needs to buy two Sprycel packs for a total of 316,000 rubles. Please help Anton with raising funds.

 

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