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Ilya is now 19 years old.
He got sick when he was 9. He was diagnosed with a brain tumor, and he had little time left to live. The tumor was too big. But the neurosurgeons of the St. Petersburg Children's Regional Hospital did the impossible. They gave my son a second life. Ilya had two surgeries and a radiation therapy course.
Little by little we got accustomed to the new life which was full of hospitals and fear of the future.
The surgeries lead to numerous complications related to the endocrine system. Also, one of Ilya's eyes went blind, and the other one half blind. After the radiation therapy he could hear twice as bad as before and he also got some speech disorders. But we continued to live, learn and struggle. 10 years passed.
In June there was another blow. A new and terrible diagnosis: acute lymphoblastic leukemia. And another death sentence: little time left to live. The bone marrow is full of cancer cells.
Once again there is this terrible fear that this time this might really be it!
The legs won't walk, the eyes won't see, and everything is like a never ending nightmare.
At first the doctors refused to admit Ilya to the regional clinical hospital. That is how bad his condition was. They said that Ilja had so many diseases that he simply wouldn't survive chemotherapy.
But he did survive! He so longed to live. He had two courses but then the doctors refused to treat him further.
But we did not give up!
In September we were transferred to the Raisa Gorbacheva Institute of Children's Hematology and Transplantology. Here's where Ilja got another chemotherapy course. After that course he felt a lot better. He literally came back to life. For the first time in a long while we could go outside. He started to read books, watch TV and show an interest in what is going on around him. We are now waiting for further treatment but in order to achieve positive results with lymphoblastic leukemia Ilya will need another 8 chemotherapy courses. That means that we have to rent a place to live in St. Petersburg for a long time (for a year or even more).
Ilya officially has disability group I. He cannot be left alone as he cannot cope with some very simple things.
His father left us 10 years ago when Ilja first got sick. He was frightened of the hardships and the load that our family had to carry.
He did not help us then and he is not helping us now either. Meanwhile we have to spend lots of money on the so-called ancillary drugs: antibiotics, antifungals, antiallergic and hormonal drugs which Ilja needs dur to his first disease and which are not on the list of free drugs for the disabled. So our pensions (Ilya's and mine) are not enough at all.
I am asking everyone for help. Please help us.
Ilya is all I have. He is my sunshine, he is my happiness, he is my pain, he is my life.
And he only has one life to live!

Marina Emilievna Kirillova,
Ilya's mother
Home address:
5-microraion d. 25 kv. 28,
187555 Tikhvin,
Leningradskaya oblast
Contact phone:
+7 (911) 736-01-83

Update as of January 12, 2010. Ilya was in intensive care unit due to paraproctitis and infectious-toxic shock. We are now discharged for outpatient monitoring and live at the rented apartment. Ilya walks very little. We signed up for a consultation with endocrinologist for January 12.
Please help us with buying medications and paying for the tests.

Update as of February 1, 2010. Ilya had a consultation with endocrinologist, and had CT scan of adrenal glands scheduled for February 18th. This way the doctors will be able to better diagnose the reason for the malfunctioning of endocrine system.
Around the same time, decision regarding autologous transplantation will be made. Ilya does not feel very well. He has a hard time recovering after chemotherapy and can barely walk.

Update as of February 21, 2010. Based on results of CT scan, Ilya's adrenal glands are normal. He had completed the main course of treatment and lives in a rented apartment. Once a week he goes for tests. A puncture was scheduled for Wednesday and if it confirms remission, Ilya will be transferred to maintenance therapy. He feels better, although it is still difficult for him to walk.
Kirill's mom needs a consultation from a family law attorney, as for a long time she has not been receiving alimonies from Ilya's father, while their financial situation is now extremely difficult.

Update as of April 8, 2010. Ilya is in remission since the end of February. Once a week he goes for checkups locally (blood tests) and once a month he comes to St. Petersburg for examinatons. The next checkup is scheduled for the end of April.
Ilya stil needs to take many medications: antiviral, antifungal and for liver support. Our family's financial situation is still very difficult, as we still don't get alimonies from Ilya's father.

Update as of May 13, 2010. At the end of April, Ilya underwent tests that confirmed remission. The next round of tests is scheduled for the end of May.
Ilya's liver indicators are very high and his dose of maintenance therapy with Purinethol had to be reduced. Heptral in pills did not help Ilya, so he needs at least 10 ampoules. Please help.
Ilya's mom

Update as of June 3, 2010. Ilya had another checkup and all is well with him. The next examination is scheduled for the end of June. He feels rather well, but he gained extra weight, which is likely due to endocrine issues.
Ilya's mom

Update as of July 5, 2010. Two weeks ago, Ilya had seizures and an encephalogram showed new lesions and seizure readiness. The puncture of cerebrospinal fluid showed that it is clear of cancer, and Ilya is in bone-marrow remission. To clarify the nature of the lesions, Ilya needs to undergo MRI next week. The test costs 3,500 rubles. Ilyusha also needs continuing therapy with AndroGel. One package that lasts a month costs 3,000 rubles. We will be very grateful for help.
Ilya's mom

Update as of July 27, 2010. Ilya is now on maintenance therapy. He needs medications to support his liver and anti-seizure drugs. Ilya is undergoing planned tests at R. Gorbacheva Pediatric Hematology & Transplantology Institute. He is in remission in regards to leukemia. His family is still in a very difficult financial situation.

Update as of September 23, 2010. On September 15th Ilyusha had a puncture. He is in remission in regards to primary diagnosis, but has serious issues with endocrine system. He has serious swelling due to extra weight.
He now has bronchitis. As soon as he gets well, we will be hospitalized at Endocrinology unit for full examination.
Ilya's mom

Update as of October 24, 2010. On November 9th Ilya is planned to be hospitalized at endocrinology unit of Regional hospital for correction of diabetes treatment. Ilyusha just now was able to overcome bronchitis. The encephalogram results show seizure readiness.
Ilya's mom

Update as of November 24, 2010. Unfortunately, on November 8th Ilya got sick with bronchitis and hospitalization had to be postponed. Doctors suspected pneumonia and now urging to repeat tests for aspergillosis. At this time Ilya has recovered and on November 30th will go to the hospital for tests.
He is gaining weight very quickly, and there is concern about the swelling. He is doing blood work weekly and unfortunately the platelet level remains consistently low. It may be a side effect of the maintenance chemotherapy (6 MP and Methotrexate) or anti-seizure medicine (Depakine Chrono 300 at 1500 mg/day). The next biopsy is planned for the middle of December; it may be possible to have it done at the Regional hospital.

Update as of December 12, 2010. Ilya is now at Regional Clinical hospital (Endocrinology Unit) where he is undergoing tests. He was taken off Minirin that was causing swelling and prescribed Diacarb. His doctors are working on selecting therapy for diabetes.
Based on encephalogram results as of December 8th he has improvement, and no seizure-ready areas were seen. However, Ilya is continuing Depakine in the same doses. Blood tests for hormones had shown a lack of testosterone, so for a long time Ilya will need to take Androgel.
Ilya is on maintenance chemotherapy (Purinethol + Methotrexate) and he also takes Biseptol, Acyclovir, Fluconazole, and ranitidine.
His transaminase level went up again, so Heptral therapy is needed again. Please help us with buying medications.
Ilya's mom

Update as of February 8, 2011. Based on results of the puncture from December 15, 2010, remission is confirmed. The next puncture is scheduled for mid-March. Minirin was canceled, and Kirill's swelling is going down, as well as his weight. He feels well. We would like to thank everyone who is helping us, all donors and AdVita fund for their help, care and support in our recovery and life.
Ilya's mom

Update as of March 10, 2011. Ilya is having edema and gaining weight again. The blood counts have dropped: leukocytes, hemoglobin and platelets. He needs Geptral and Minirin.

Update as of April 19, 2011. Ilya underwent examination and a course of treatment for lymphastasis of lower extremities at Surgical unit of Tikhvin hospital. After IV drips, the swelling is gone. Kirill was discharged and referred for a consultation with vascular surgeons at Regional Clinical hospital. Kirill feels much better and his weight is stable. He is in remission in regards to leukemia.
Ilya's mom

Update as of August 24, 2011. Ilya is in remission in regards to the primary diagnosis. After treatment at Tikhvin hospital he has significant improvement of lymphostasis in his legs. In September he will have MRI of his head and a puncture. Ilya feels well and is in a positive mood.
Ilya's mom

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