Another Nilufari's photo

Hello! I am the father of a 17-year-old girl Nilufari Sharifbek from Tajikistan. In July 2008, when my daughter was getting ready to apply to college, she started to have pains in her shoulder. Nilufari had 3 X-rays in three months until the doctors determined Ewing's sarcoma of the left clavicle. It was a real disaster for us. My daughter was admitted to college, and is now a first-year student of the economics department of Tajikistan National University. She did not know how serious her disease was and attended classes. In September Nilufari's shoulder became very painful and swollen, and she was admitted to a cancer center in the city of Dushanbe where she had a chemotherapy course. Her treatment was to consist of two chemotherapy courses, a surgery to replace the clavicle with a bone from her leg and radiation therapy. We asked the doctors if the clavicle could be replaced with a foreign body. They said that could not be done in Dushanbe, and we'd have to wait for a long time. We were advised to go to a Russian clinic, preferably the N.N. Petrov Research Institute of Oncology in St. Petersburg, where the surgery would be "inexpensive", that is around USD 3,500 - 4,500.
There are four children in our family. One of them, Nilufari's brother, has been disabled from childhood due to chest distortion. My wife and I would have to spend a minimum of 1.5 to 2 years to raise the money we need for our daughter's treatment. The doctors believed the surgery was urgent. That is why I took a loan against property (our flat) and received 5,500 dollars. I quit my job, and on November 28, 2008, my daughter and I came to St. Petersburg. We stayed at an acquaintance of ours, Lidia Sergeevna, who helped us with the registration and offered us her flat.
At the Oncology Institute we were told to go through all necessary tests again. Being foreigners, we had to pay a double price for those tests. Based on the results of the tests we were admitted to hospital, because the diagnosis was even more awful - stage IV Ewing's sarcoma with lung metastases. The doctor explained to us that the treatment and the possible bone marrow transplantation would cost us around 1.9 - 2.3 million roubles.
There is nothing I would not do to save my daughter. When we came to St. Petersburg I was hoping to get a job, but it turned out that I have to stay in hospital with my daughter all the time. Nilufari keeps asking me how we will find the money and what will happen if we fail to. I do not know what to tell her. When I worked at a hospital I was helping everyone to the best of my ability and giving advice, but now that I found myself in trouble I do not know what to do. Our relatives help us as much as they can. The doctors and some good people advised us to turn to the AdVita fund.
I am asking all of you who were touched by this little letter to help us. My innermost desire is for my daughter to be healthy. God creates people so that they take joy in their lives, help others and try to make life better for mankind.
Please help my family.

Respectfully,
Nilufari's father
Sharifbek Gulmakhmadovich Shoramazonov.
Contact phone:
+7 (951) 678-04-47

Medical report

Update as of January 29, 2009. Nilufari had an operation to remove a metastasis from her lungs. The girls is already getting up. She feels relatively well.

Update as of February 13, 2009. Nilufari finished the second chemotherapy course. She feels relatively well. The histology testing results are not yet available.

Update as of March 1, 2009. Nilufari is planned to undergo another course of chemotherapy. It requires the following medications:

- Vincristine - 2 mg,
- Holoxan (Ifosfamide) - 13 gm,
- Uromitexan - 32 bottles,
- Doxorubicin (50 mg) - 3 bottles,
- Kytril or Zofran - 3-4 bottles.

Afterwards, Nilufari is planned to undergo bone marrow transplantation at R, Gorbacheva Pediatric Hematology and Transplantology Institute. The cost of autotransplantation is 800,000 rubles. We are receiving very few donations for Nilufari's treatment. Please help this remarkable young woman. Fortunately, the doctors have a very good prognosis for her.

Update as of March 20, 2009 The girl started another chemotherapy course under VIDE protocol, but without Vepeside, to which she is allergic.

Update as of April 15, 2009. Based on the control testing results after chemotherapy, a decision was made to perform radical surgical tumor removal. Nilufari's collarbone will be removed. The operation is planned for April 20th.

Update as of June 3, 2009. Epicirisis: page 1, page 2

Update as of June 3, 2009. Nilufari completed main course of treatment at Oncology Research Institute. On Monday Nilufari will be hospitalized at BMT clinic for collection of stem cells followed by bone marrow autotransplantation.

Update as of June 17, 2009. The collection of stem cells went without complications and Nilufari feels well. She is now at home. After she recovers, she will undergo one or two more chemotherapy rounds. Each round requires medications that cost 35,000 rubles. In addition, Nilufari's family accumulated a large debt for the apartment rent. Nilufari and her father really need financial help.

Update as of August 4, 2009. Unfortunately, transplantation was postponed again, as the doctors plan surgery to remove a part of Nilufari's collarbone. Her family urgently needs help with paying off the debt for apartment rent: 24,000 rubles for 4 months. Nilufari's father has a job, but his earnings are not sufficient to cover apartment rent and medications.

Update as of September 8, 2009. Nilufari was hospitalized at BMT clinic for bone marrow autotransplantation. She started conditioning regimen.

Update as of October 2, 2009. Nilufari's autotransplantation went as planned. She is now in 21st day and her leukocyte counts are recovering slowly.
Nilufari suffered from severe mucositis when her tongue bled and she could not eat. She now feels better. Nilufari's family still needs financial support. Her father cannot work at this time, as he has to stay with his daughter at the hospital.

Update as of October 26, 2009. Nilufari recovered fully after transplantation and was discharged for outpatient monitoring. She feels rather well.

Update as of January 10, 2010. Nilufari's platelet counts are rising steadily, but she does not feel well and is in a depressed mood. She is tired, does not want to eat and wants to go home.
On January 27th she is planned to go for CT scan in two projections, which will cost 18,000 rubles. Please help!

Update as of February 3, 2010. Nilufari still has low platelet counts and a bad appetite. Her mood is also not good, the girl is very homesick and is looking forward to the time when she will feel well enough to leave the hospital for a weak at least.
Computer-aided tomography did not take place on January 27 due to technical problems, it has been rescheduled for February 3.

Update as of February 9, 2010. Niufari went for ultrasound imaging on February 3 (it showed all is well) and CT scan that showed no areas accumulating contrast. Nilufari still has low platelet count, but she really wants to go home. She is certain she will get well once she is at home. Her parents are seriously considering letting her go home for some time. They cannot go all together, however, because the tickets are very expensive (12,000 rubles one way for 1 person) and Nilufari's father cannot leave his job because he has debts to pay off that accumulated during his daughter's treatment.
Their friends promised to come to St. Petersburg to help Nilufari get home, and once they are there, Nilufari's aunt will help to look after her. She will need to be tested every 10 days, and then she will have to return to St. Petersburg in about 3 months for control tests.

Update as of February 28, 2010. Nilufari's platelets counts are finally rising. Based on the last test results, the count is 108,000. She feels well and is in a good mood, but still wants to go home. Nilufari still has a large debt to the clinic for her treatment. The planned ultrasound and an x-ray are scheduled for March 20.

Update as of March 7, 2010. Nilufari is at home now and feels well. At the end of March she will have to undergo planned tests.

Update as of April 15, 2010. The girl is now at home, tended to by her grandmother and aunt.
Nilufari cannot come to St. Petersburg yet due to some paperwork issues – the girl cannot get her passport. We hope that a sickness certificate signed by an oncologist will speed up the process and the papers will be ready by April 20.
Nilufari is feeling fine and is in a good mood. The platelet count has gotten normal. Her appetite is good.
Nilufari was examined at home and her father showed the results to the doctor in St. Petersburg who said that all is fine. The next examination is going to take place in St. Petersburg after April 20.

Update as of May 23, 2010. Nilufari is now in St. Petersburg. She feels well. Nilufari is undergoing tests and on Monday she will have an ultrasound and an x-ray.

Update as of July 3, 2010. Nilufari underwent planned tests. She is doing well.

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