Alena died on January 12, 2012

Another Alena's photo

Hello!
My name is Oksana Azup, I am married and we have a 7-year-old daughter Alena. She is a very social and lively girl who loves playing with friends and skate on her roller skates. Alena has been asking us for a little brother or sister for a long time, because she really loves little kids and she promised to help me if her dream comes true. Alena finished a preparatory class of a music school where she played flute. This year she was supposed to start the 1st grade and continue studying at music school. Unfortunately, it was not meant to be.
One evening at the end of July, Alena complained of a bad headache. She also developed bruises on her legs. The next day we were admitted to Vologda Regional hospital. There she started feeling worse and spent a night in intensive care unit. After series of tests, Alena was diagnosed with acute lymphoblastic leukemia.
We were referred to Gorbacheva Institute for further treatment. Currently, Alena is undergoing high-dosage chemotherapy, and in the future she will have transplantation from an unrelated donor, and long-term therapy.
This is all in the plans, and now we really need Vfend medication. During high-dosage chemotherapy, Alena caught aspergillosis (fungal infection). The doctors told us that treatment of infection will take a long time and we will need a lot of this medicine.
Vfend costs 27,000 rubles a pack and lasts Alena a week. We cannot afford even a single pack a month, as I am expecting a second child and do not work at this time.
On behalf of our whole family, I am asking you to help us save our little daughter, our Alenushka. We will be very grateful for any help!

Oksana, Alena's mom

Update as of October 26, 2009. Alena completed another round of high-dosage chemotherapy and suffers from severe headaches. The cause for them is being determined. Alena is also continuing Vfend therapy at 400 mg a day.

Update as of October 27, 2009. Alena's condition is rather serious. She did not tolerate Vincristine well and suffers from headaches and stomachaches. The results of the spinal fluid test for aspergillosis are not yet ready.

Update as of October 26, 2009. Alena completed another round of high-dosage chemotherapy. She suffers from severe headaches, the cause of which is being studied. Alena is continuing Vfend therapy at 400 mg a day.

Update as of December 24, 2009. Alena is much better, she has been transferred from the intensive care unit to a regular ward. The puncture testified to the remission and the doctors plan to let Alena go home for the new year holidays.
Alena's mother Oksana gave birth to a girl who was named Polina. Both the baby and her mother are feeling fine, and we congratulate the Azup family on the birth of their daughter!
Unfortunately the cord blood taken in childbirth proved to be incompatible with Alena's and will not be good as a transplant. The doctors are considering a haploidentical transplantation, Alena's father being the most likely donor.

Update as of January 19, 2010. Alena feels well. After the holidays, her whole family returned to St. Petersburg. Alena's dad who will be her donor for haploidentical transplantation, is undergoing all the required tests. Since Alena will receive high doses of chemotherapy during the whole treatment, she will need to take Vfend for a long time.

Update as of January 28, 2010. Alena began pre-transplantation chemotherapy. She does not tolerate it well.

Update as of February 4, 2010. Alena underwent transplantation from her father. She feels well, except for mucositis.

Update as of February 21, 2010. Alena recovered after transplantation, and her blood counts increased. She shows first signs of light form of skin GVHD. Alena feels somewhat better, but eats very little. Her mom would be very grateful for helping them buy Nutrizon Vanilla nutrition, because this is the only type of food that Alena agrees to eat.
They also need help with buying diapers for Alena's little sister (she weighs 5 kg), as the family has very little money. Alena is still taking Vfend. We are very grateful to Metro newspaper for publishing an article about Alena.

Update as of March 30, 2010. Alena is feeling rather well. She is continuing Vfend therapy. We are sincerely grateful to Happy World fund, which purchased this medication for Alena for several months.

Update as of May 26, 2010. Alena feels rather well despite sinusitis. She is undergoing tests and still receives Vfend and Intraglobin. In two weeks, she is planned to undergo donor's lymphocyte infusion from her father.

Update as of June 22, 2010. On June 1, Alena received donor's lymphocyte infusion. She now feels well and on June 12th we were discharged. We will now come to the clinic once a month for control punctures and tests. Alena still takes Vfend, but thanks to Happy World fund, we still have it.
We are enormously grateful to everyone who has helped us and continues to help. We would not be able to cope without you. We are wishing happiness and great health to all our doctors, donors, supporters, volunteers and friends. Thank you!
Alena's mom

Update as of August 18, 2010. Alena came for an examination which revealed a chronic skin GVH reaction. Treatment therapy has been prescribed, and the next examination has been scheduled for September. The girl is now back at home. She is feeling fine.

Update as of October 6, 2010. This week Alena comes for planned testing to R.M. Gorbacheva Institute of Pediatric Hematology and Transplantation. The girl feels well.

Update as of December 9, 2010. Alena completed planned tests: clinical and hematological remission was confirmed, and the minimal residual disease went down significantly. There are no symptoms of GVHD. The next tests are planned for end of January.

Update as of February 28, 2011. Alena arrived for tests at R. Gorbacheva Pediatric Hematology & Transplantology Institute and after control puncture she was diagnosed with a relapse. She is now undergoing anti-relapse chemotherapy under RIST protocol (with sirolimus, irinotecan and temodal). She feels rather well: plays, watches TV and even acts naughty.
Alena's mom
Letter from clinic

Update as of March 17, 2011. Alena is continuing therapy under RIST protocol. Control puncture showed decrease in blasts and it was decided to continue therapy. Alena feels well and she is monitored as an outpatient.

Update as of April 5, 2011. Unfortunately, RIST protocol did not help achieve remission, and Alena subsequently underwent chemotherapy with Cytosar and asparaginase. She is now recovering. Alena needs Intraglobin, twice a week for indeterminate time. Each bottle of medication costs 10,000 rubles.

Update as of May 13, 2011. Alena is undergoing the 3rd chemotherapy cycle, this time- high-dose. After the previous two, remission was not achieved. Since Alena never tolerates high-dose chemotherapy well and develops neurologic complications, a neurologist prescribed supporting therapy. All her blood counts are very low now. As soon as Alena recovers, she will undergo donor's lymphocyte infusion to stimulate graft versus host reaction. Alena feels relatively well.

Update as of June 4, 2011. Alena completed high-dose chemotherapy under the protocol. Unfortunately, she did not achieve remission. She is planned to undergo one more chemotherapy cycle and then a possibility of second transplant will be considered.

Update as of June 26, 2011. The doctors have decided to perform another transplantation. This time Alena's mother will be her donor. At present the girl is administered chemotherapy before the transplantation.

Update as of July 7, 2011. It has been a week since transplantation. Alena is in cytopenia and has slight mucositis, but feels relatively well.

Update as of July 20, 2011. Alena's transplant started engrafting. She has symptoms of intestinal and skin GVHD, and she has swelling due to low protein in her blood. Based on control puncture, donor's bone marrow engrafted at 70% and percentage of blasts decreased to 20% (from 50%). Alena does not feel very well due to constant headaches. She receives painkillers.

Update as of August 9, 2011. Alena is continuing to recover after second transplantation. Based on control puncture, her blast count is within norm. She continues having signs of skin GVHD. Swelling is now controlled and she is taken off pain control.

Update as of September 11, 2011. Alena is now monitored at the day care facility. Puncture results prove that she is in remission. There are signs of skin GVH reaction. The transplant is functioning well but the platelet count is not stable, so Alena needs blood transfusions every once in a while. There are minor neurological complications due to the toxic effect of chemotherapy. Alena still needs Vfend.

Update as of September 26, 2011. Alena is still monitored as an outpatient. The neurological complications were taken under control, but she still receives antiviral therapy. Vfend is still needed.

Update as of October 31, 2011. Alena is still being monitored as an outpatient. Control puncture showed that she has increase in minimal residual disease. She is planned to received chemotherapy under RIST regimen. Vfend is still needed.

Update as of November 10, 2011. Alena was hospitalized at the clinic with fever and high C-reactive protein. She also has signs of intestinal GVHD, 2 grade. Alena urgently needs intraglobin and meronem.

Update as of November 29, 2011. Two weeks ago Alena had subarachnoid bleeding into brain. It was stopped and Alena feels rather well now. She is monitored at the day hospital. GVHD is under control, and her blood counts are normal.

Update as of December 30, 2011. Alena received a first cycle of chemotherapy under RIST regimen. She is now in cytopenia.

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