Umid died on January 30, 2010

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Hello!
Umid is a citizen of Uzbekistan. He has three sisters. His father died when he Umid was just two years old. His oldest sister is 7. Umid's mother, Sadat, came to St. Petersburg as a seasonal worker. She works legally as a cook. Umid and his sisters stayed in Uzbekistan with their aunt who has three children of her own.
In September 2008 one side of Umid's face lost feeling. The local doctors did not diagnose him correctly at first and time was lost. When the boy began feeling really unwell, his aunt took him to St. Petersburg. He is now hospitalized at Pediatric Oncology unit of City hospital No.31. After examination, he was diagnosed with rhabdomyosarcoma of nasopharynx with metastases in lungs, and the therapy was started. Umid is in a critical condition and stays in intensive care unit. All therapy, examinations, procedures and hospital stay are billed to him at full cost. A day at intensive care unit costs 2,000 rubles, and even higher if cost of medication is added.
Umid's mother was able to find 40,000 rubles to cover the first hospital bill, but she has no more money.

Anna Kulakova,
AdVita fund's volunteer

Medical report

Update as of November 14, 2008. Umid's condition improved a little. Yesterday, he was taken out of intensive care to a regular room. The doctors believe that his tumor is starting to respond to therapy.
Umid was billed 65,000 rubles for therapy offered from October 30th to November 10th. He now receives treatment under guarantee letter from AdVita fund. However, we really need help to start paying the bills!

Update as of November 29, 2008. Umid and his mom were allowed to go home until December 4th. Upon his return, Umid will immediately start the next chemotherapy cycle. Since his mom will care for him, she will have to leave her job temporarily, which means they will have no income.

Update as of December 4, 2008. Umid returned to St. Petersburg. He feels OK. Tomorrow he will go to City hospital No.31 for the next chemotherapy cycle.

Update as of December 8, 2008. Our fund received a bill for 137,671 rubles for treatment Umid received from October 27th to November 28th. Please help us pay the hospital bill.

Update as of December 12, 2008. Umid is now having the next chemotherapy course. He is ready to go on fighting, and is feeling cheerful. Umid has new friends, and though he does not speak Russian well yet he tries to communicate. He loves to play checks and almost always wins, and he is also fond of drawing animals.

Update as of December 16, 2008. On December 10th Umid was administered the second chemotherapy block. He did not tolerate it well, as usual. He was nauseous and his eye got infected. Umid feels better now. In any condition, however, Umid is very interested in playing with his new friends. When his unit was being decorated for the New Year, he enjoyed helping putting the toys around. He cannot wait for the holiday and wants to see how it is celebrated in Russia. Together with Umid, we wish everyone to stay healthy! We are hoping that New Year will bring everyone lots of health, happiness and joy!
Umid's mom

Update as of December 24, 2008. Umid is so happy that Russia is already celebrating the New Year. Father F rost and Snegurochka, his granddaughter, have already come with gifts for him. He is very glad that he got a costume of a bear and a huge erector kit with cars. Umid took part in contests and games and even recited some new year poems (in his native language of course). No one understood a word, but Umid got a lot of praise. He is very glad that he is here with his new friends for New Year's.
Umid's mother

Update as of December 31, 2008. On December 30th we started the 3rd chemotherapy block. Umid fells unwell, as usual. He suffers from nausea, vomiting and lack of appetite. I hope this will pass soon. Umid does not feel excited, although he waited for the New Year for a long time. Well, everything will be OK. The most important thing for him is to get better and we will celebrate the New Year properly the next time.
We are wishing everyone good health and happiness! Hope the year of Ox will bring lots of luck and joy to everyone!
Umid's mom

Update as of January 8, 2009. Umid was allowed to stay at a rented apartment for a few days. He needs a consultation with ophthalmologist.

Update as of January 13, 2009. We would like to thank Yulia for covering the current bill for Umid's treatment for 128,000 rubles.

Update as of January 14, 2009. At the visit to ophthalmologist, we learned that Umid lost 60% of vision in one of his eyes. He needs long-term therapy. Umid was prescribed supporting therapy and installed a special lens protecting his eye. The next visit is scheduled in 10 days. Each visit costs us 750-1,000 rubles. We really need help!

Update as of January 16, 2009. Umid needs 6,000 rubles for MRI. He needs to have the scan on January 20th.

Update as of January 22, 2009. Umid needs to undergo additional MRI scan before the operation. It costs 10,000 rubles.

Update as of January 30, 2009. Thanks to all the people who are helping us, and with God's help, Umid underwent the third chemotherapy already. He is also being tested and the doctors are making decisions how to treat Umid in the future. Soon he will need an operation. Umid feels well now. He draws, plays with the girls, and even has time for the computer. Umid can speak Russian pretty well already, and he can understand almost everything.
Umid's mom

Update as of February 4, 2009 Based on doctors' decision, Umid will not be operated. Instead, he will undergo radiation therapy and chemotherapy. Umid's therapy is billed to him at full cost. In two weeks, Umid will need to pay another installment for his hospital stay and treatment at Municipal hospital No.31. His mother who works two jobs does not have this much money. Please help Umid!

Update as of February 8, 2009 Umid was administered another chemotherapy block over the weekend. Once his blood counts recover, the doctors will start radiation therapy, which is planned for mid-February.

Update as of February 12, 2009 Umid started a course of radiation therapy. He received another hospital bill for 77,000 rubles.

Update as of March 19, 2009. Umid is having radiation therapy and does not always feel well. There are some complication in the throat, his lymph nodes are enlarged, but that might be the consequence of the radiation therapy. We are continuing with the treatment and hoping that the tumor decreases and the tortures will be over for Umid.
Umid's mother

Update as of April 11, 2009. Umid finished a course of radiation therapy on the area of his throat. He had complications and lost his voice completely. Umid also had no appetite and lymph nodes near his jaw enlarged. Now his voice recovered despite burns, and currently he is undergoing radiation therapy on his lungs. Umid complains of pain in his ribs and the doctors prescribed additional therapy through intravenous drips. Overall, Umid's condition is tolerable. Soon, a decision regarding operation will be made. The radiation therapy was supposed to shrink the tumor in Umid's throat. We are praying to God it worked.
Umid's mom

Update as of May 17, 2009. Umid finished radiation therapy and doctors even managed to administer him the 5th round of chemotherapy prior to that. As usual, Umid felt unwell, but he is much better now.
Umid was allowed to go home for the weekends. Once the test results are ready, the doctors will start preparing him for the operation. Umid can already talk to the doctors in Russian without needing a translator. He can explain how he feels and what bothers him.
Umid also has no problem playing and talking to kids at the hospital. I am very happy about that. Our doctors are telling us that the main challenges are still waiting ahead, but we believe that everything will be fine and we will overcome the difficulties.
Umid is a strong willed boy and he really loves life.
Umid's mom

Update as of June 3, 2009. Umid underwent CT scan. We would like to thank Tatiana and Yulia who agreed to pay for it. Based on CT scan results, Umid's tumor is growing. He is planned to undergo high-dosage chemotherapy.

Update as of June 3, 2009. Unfortunately, Umid has chickenpox. He was discharged from the unit. The chemotherapy was interrupted until Umid completes his therapy for chickenpox.

Update as of June 5, 2009. Hello! We are continuing our fight for Umid's life. It is now the eighth month of our treatment in hospital No.31.
Umid completed 7 courses of chemotherapy and 51 sessions of radiation therapy. Umid feels well now, but at times he feels lonely, everything irritates him and agitates, and he says he cannot live like this anymore.
But then he sees that things are not that bad around him, and he starts hoping again that this tide will turn someday and he will be able to live and enjoy life. He really misses it now.
I feel that he had already reconciled himself to everything that expects him. And we still have a long treatment ahead.
Umid's mom

Update as of July 30, 2009. Hello! I have not written about Umid in a while. He was sick with chickenpox for 21 days and we treated him at home. During those days many things changed: Umid's face and neck started to get swollen. The doctors suspected that he started developing a tumor in his sinuses.
As soon as we were admitted to the hospital again after quarantine, we went for MRI scan right away and signed up for PET imaging. Fortunately, the testing showed nothing so serious. The swelling on Umid's face and neck were a complication due to radiation therapy. However, a small black spot was noted in Umid's lungs.
After the examination, Umid was installed a central catheter and administered a course of chemotherapy. His body was probably much weakened, because he had a hard time tolerating it. Umid suffered from nausea, vomiting, and fever. The blood tests are still showing bad results; it seems that something is not right in Umid's lungs.
To avoid errors and doubts, Umid had images of his lungs taken. Based on the results, a decision will be made whether he will undergo surgery on his chest or not. You know, it is easy to write about this, but only God knows what I felt during that time. Hopefully, all these worries are not in vain. The day will come when we will forget about the pain and death.
Soon it will be Umid's 10th summer of his life, and he is wishing that on his 11th birthday he will not even think about the time he was ill. I am wishing for the same. And we are hoping for the God's grace.
Despite Umid's serious illness, he is a lively and active boy. He is interested in everything and already knows Russian as well as a native language. This is one good thing: the disease has not affected his mental development. At this, I will conclude my story about this young boy. He still has to go for testing, and afterwards I will continue writing about him. God bye for now. I am wishing all of you great health and long lives. May God be with you.
Umid's mom

Update as of September 13, 2009. During weekend, Umid was allowed to go home. Today he came to the hospital for tests. He is scheduled to undergo surgery on Tuesday to remove lesions in his lungs. The successive histology testing will determine the nature of the lesions.

Update as of October 1, 2009. Umid's surgery went well. The histology testing results did not show any live tumor cells. Umid's central catheter was removed. He will now start receiving supporting therapy in pill form and come to the hospital once a week.

Update as of October 15, 2009. Umid comes to the hospital once a week for tests. His treatment is still in pills. Umid feels well. His mom lost her job (the cafe where she worked as a cook closed), and really needs help with finding another job. She has temporary registration card and a work permit.

Update as of December 27, 2009. Umid is now in hospital getting maintenance chemotherapy. He went to the new year party on December 24 and liked it very much there. Due to chemotherapy Umid is feeling worse, he is weak and has nausea.

Update as of January 12, 2010. Unfortunately, Umid's condition worsened. He was hospitalized with suspected relapse. In the next few days, he will undergo MRI.

Update as of January 14, 2010. Unfortunately, MRI scan confirmed widespread relapse. All the treatment protocols have been tried previously. Umid's condition is such that his mom decided to take him home to Uzbekistan.
In the next few days the doctors will select medications that will alleviate his condition and Umid will be able to travel.

Update as of January 23, 2010. On January 18th Umid with his mom and sister flew back home. They got home without any problems. Umid is now taking medications according to the protocol offered by his treating doctor.

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