Photo of Ilyusha and his brother

Hello!
My name is Irina. I am writing to you with a pain in my heart and a big hope for help. I have two children, 10-year old Ilyusha who was born on March 12, 1998, and 4-year old Maxim, born on September 3, 2003. It so happened that I bring up my children by myself. My youngest son has been disabled since birth. The oldest son has been a healthy boy until he turned 10. In June of this year, my oldest, Ilyusha, was hospitalized due to bronchitis. While at the hospital, he started complaining of severe headaches that were accompanied by nausea and vomiting. At a hospital in Kirishi the doctors were unable to diagnose him and we were referred to the Regional Children's hospital in St. Petersburg. After CT scan of Ilyusha's brain, like a thunder in a clear sky we heard the diagnosis: herminogenic hormone-producing brain tumor, occlusive triventricular hydrocephaly.
I could not believe that another disaster occurred in my family.
After the neurosurgeons took tissue for testing via biopsy and for oncomarkers, the common opinion was that an operation would be too dangerous for Ilyusha, as the tumor was in the middle of his brain. They recommended him to undergo chemotherapy, which would give my son a chance to live a healthy life.
While he was being processed for hospitalization at City hospital No. 31, Ilyusha started feeling really unwell. His condition was worsening with every passing hour. He had severe headaches, practically stopped eating and was losing consciousness. When he got to the hospital, I was warned that there are no guarantees that he will recover. It is impossible to know how his body will react to chemotherapy and radiation. He has a very long treatment ahead of him and will have to spend close to a year at the hospital.
My soul was tearing in a thousand little pieces from pain when I realized how difficult and torturous the road to recovery will be for my son. I always believed that we already faced the worst disaster, my youngest son's illness. I could not even imagine then what awaited me in the future. In this life, the most precious things for me are my children.
The treatment at the City hospital No.31 is very expensive for us, because we are not residents of St. Petersburg, but of a town of Kirishi in the Leningrad region.
I want so much to give Ilyusha all he deserves, but I cannot afford it. I am lacking money for treatment and care for my son. I would like to ask all the people who have the ability to help me: we really need your help, advice, support and prayer.
Please help me save my son Ilyusha! Thank you in advance for your support.

Irina
Contact phone:
+7 (906) 262-43-58

Medical conclusion

Update as of September 20, 2008. Iliya's hospital and treatment bills from City hospital No.31 were paid for by the Regional Health Administration. It also agreed to transfer additional 100,000 rubles for the boy's treatment.
Ira Smirnova, Ilyusha's mom wrote us the following: "Ilyusha had much harder time with the third chemotherapy course. He had really bad stomachache. He is now undergoing ablution. Due to neurological problems, the hand tremor increased and Ilyusha receives Berlition intravenously. We are sincerely grateful to Vera, principal of school No. 3 in Kirishi and two Natashas from St. Peterburg's Parents forum who visit Ilyusha, help and support us. Thank you very much!"

Update as of September 26, 2008. After the third chemotherapy block, all of Iliya's blood counts plummeted and he had very low hemoglobin. He received transfusions of blood and r-mass. Iliya had three nosebleeds in a week. When he feels better, he enjoys drawing, playing with Play-Doh and watching cartoons.

Update as of September 30, 2008. Unfortunately, the money transferred by the Regional Health Administration is not sufficient to cover all Iliya's expenses at the hospital No.31. At this time, the hospitalization is continued under AdVita fund's guarantee letter, since the Regional Health Administration refused additional payments. Once Iliya completes his treatment, the hospital will issue a bill. Iliya needs to undergo one more chemotherapy block that will be followed by radiation.

Update as of October 1, 2008. Ilyusha started the fourth chemotherapy course. He feels relatively well and is in a good mood.

Update as of October 8, 2008. Ilyusha completed the fourth chemotherapy block. He did not tolerate it well: could not eat and suffered from vomiting. His condition has improved now. Ilya started to eat. He leaves his room and plays with other kids. In the next few days he will undergo MRI testing.
Ilyusha's mom would like to sincerely thank everyone who cares for him and helps in his fight.

Update as of October 17, 2008. Iliya is recovering after the fourth chemotherapy block. His blood counts are low, so he received blood transfusions, as well as antibiotic therapy. We are awaiting control MRI scan scheduled for October 20th with some worry. Ilyusha is in a good mood. More and more often he walks out into a hall to play with Kirill Belyaev.
Ilyusha's mom

Update as of October 20, 2008. The MRI scan showed that Iliya's tumor shrank significantly. Iliya now needs to undergo a course of radiation therapy.

Update as of November 4, 2008. Iliya will start radiation therapy on November 5th.

Update as of November 13, 2008. Ilyusha is undergoing radiation therapy. He feels well and enjoys playing with kids. The radiation therapy will end mid-December.
We are enormously grateful to everyone who is helping and supporting us at this difficult time.
Iliya's mom

Update as of November 19, 2008. Ilyusha continues radiation therapy. He feels well and in a great mood. He enjoys working with clay, drawing and playing with other kids in the game room.
On November 16th we went to circus with Louisa Vassilieva and her mom. The kids were absolutely happy.
Next weekend we plan to go home. Ilyusha is missing his little brother a lot. Thanks to all the people who have helped and continue to help us, I can see my son get better and enjoy his life. Thank you very much!
Ilyusha's mom

Update as of November 26, 2008. Ilyusha continues radiation therapy. He feels well and in a good mood. During the day he enjoys playing with other kids.
Iliya's mom

Update as of December 3, 2008. Ilyusha is continuing radiation therapy. He feels well. Iliya and I are sincerely grateful to Saneket company for paying our bill for the latest chemotherapy cycle, and to all our supporters for paying for the test. Thank you very much!
Iliya's mom

Update as of December 12, 2008. Iliya continues to get radiation therapy, he is feeling well and enjoys playing with other children. On December 6 he went to the arts fair where children's paintings were exhibited, including Iliya's.
This weekend we are going home. Many thanks to everyone who is helping us, God bless you.
Iliya's mother

Update as of December 16, 2008. Friday, December 19th, will be Ilyusha's last radiation therapy day. He feels well. On December 16th he had an x-ray of lungs and ultrasound of abdomen. He also had blood tests for oncomarkers, or tumor cells.
The test results all came back good. The next week Ilyusha is scheduled for discharge. Ilyusha and I would like to express our heartfelt gratitude to all the people we know and don't know who have come to our help.
Ilyusha's mom

Update as of December 24, 2008. Iliusha finished his radiation therapy course, and his basic treatment finished with it. He is feeling well. On December 24th we are going home for a month. As a mother, I would like to give many thanks to our doctor Galina Georgievna Radulesku, the head of the Unit Margarita Borisovna Belogurova, as well as the entire medical staff of the Pediatric Oncology Unit of City Hospital 31. My son will always remember that he owes his recovery not only to wonderful doctors but also to the volunteers of the AdVita fund and all donators. Many of you we do not even know, but we will keep you in our hearts forever! Iliusha and I are giving you our best wishes for the upcoming New Year! May you all be healthy, happy and satisfied with your lives, may all misfortunes pass you and yours by. Thank you all so much.
Irina Smirnova, Iliusha's mother

Update as of January 30, 2009. We stayed for a month in a village in Kostromskaya region visiting Iliya's grandfather. Ilyusha went out every day with his brother. The boys threw snowballs at each other, rode sleds, and made snowmen. Iliya felt well and drank fresh milk every day. The kids really enjoyed the trip. On January 28th Ilyusha and I will come to the hospital for control MRI, the results of which will show how effective the treatment was (they will be available on Monday). We are enormously grateful to everyone who have helped and continues to help us. Thanks to kindness of your hearts, Ilyusha is getting better. He is in a great mood.

Thank you very much!
Ilyusha's mom

Update as of February 13, 2009. Ilyusha feels relatively well. He is being monitored by a neurologist. Iliya is afraid of the dark more and cannot sleep alone. After discharge, Ilyusha took supporting medications, such as Essenciale Forte N and Magne B6, but then run out of them. I could not buy them, because I do not work due to my kids' illnesses. The neurologist from our local hospital in Kirishi wrote me a prescription for free medications under the federal program, but when I went to the pharmacy, it turned out that the medication is available only at the regional pharmacy, but not at the federal pharmacy (and we are allocated to the federal one). For that reason, I was not issued medication and told to wait for indeterminable time. Fortunately, there are good people in the world.
Natasha Rakhmanova, who visited Ilyusha and me at the hospital, keeps helping us still. She purchased and delivered us the medication for a month. We cannot find the words to express our sincere gratitude to Natasha for her care and support. She became a family member for Ilyusha and me. We will always remember what she had done for us.
Ilyusha's mom

Update as of May 4, 2009. Ilyusha was tested for oncomarkers, and the test results are normal. Iliya goes out for walks, plays, and plans to go to the country for a month. Iliya and his mom would like to thank Natasha for giving them a computer!

Update as of September 11, 2009. In June Ilyusha was in a camp in Ireland where he had a great time. He was very excited to make a lot of new friends, and there was lots of interesting activities. In particular, Ilyusha was very impressed by lack of flies and mosquitoes. Ilya is very hopeful that he will be able to go to the camp again. Afterwards, Ilyusha went to the countryside in Kostromskaya region with his mom and brother Maxim. Thanks to clean air and fresh goat milk, Ilyusha gained 9 kg. The family returned home only at the end of August and immediately tested Ilya for oncomarkers. All was well. Then Ilya's mom was offered to take her kids to Solnechnoe sanatorium. Irina, Iliya's mom, was very happy to have the opportunity to spend another month in a place with a fresh air and under doctors' watch. However, their plans almost fell through when it turned out they would have to pay for the stay as the residents of Leningradskaya region. Fortunately, the head of the sanatorium was able to take them in for free when she learned that the family has two disabled children. Since the beginning of September, Ilyusha with his mom and brother have been staying at the sanatorium. There he goes to school (Ilyusha is going to the 4th grade again), walks outside a lot, and plays with children. He is very happy with everything.
In mid-September, Ilya will start another course of therapy with Magne B6 and Essenciale Forte. The family's financial situation is still very difficult. Their income consists of alimony and two disability pensions. Irina cannot keep a job as she will soon have to stay at the hospital with Maxim, and Ilya too needs a lot of attention.

Update as of December 27, 2009. Ilya is feeling fine. The tumor markers test showed that everything is fine. Ilya is now staying in the country at his grandmother's with his brother and mother.

Update as of January 21, 2010. Ilya completed planned tests and he is doing well.

Update as of March 7, 2010. Ilya was at the hospital for examination and consultation. The tests for oncomarkers came back negative. Ilya feels well.

Update as of March 14, 2010. The tests showed that Ilya is doing well. His mom asked to thank all the forum members who donated money for Ilya's tests.

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