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Another Anya's photo

Hello!
My name is Anna, and I live in Saratov. I'm only 14 years old, but I have already had to fight a very serious disease four times; at a young age, I found out the meaning of words "remission" and "relapse" and endured chemotherapy. My clinical history began in 2006, when I started first grade. I became seriously ill, but the doctors could not diagnose me. Every day I felt worse and worse, and no one could tell what was going on. I went to medical checkups, saw many doctors, but everyone was at a loss... Finally someone recommended that my mom take me to a hematology clinic. And that was it. I was diagnosed with acute lymphoblastic leukemia. The treatment began: chemotherapy, pills, IVs. I was so eager to recover as soon as possible and to become a healthy child like I used to be! My mom explained that I shouldn't complain and should do everything the doctors tell me. And I tried so hard. The treatment was over in 8 months, and I was then on maintenance therapy for a year and a half.
The doctors promised a long-term remission but - alas! - their prediction did not come true: in 2009 I relapsed. I felt even sicker than the first time. The doctors said that the prognosis was unfavorable. Again I received chemotherapy, pills, IVs. And again I achieved remission and started maintenance. Life began getting back to normal, I started going to school and the skating rink, and spent time with friends. But in June 2011 during a routine checkup I was diagnosed with CNS leukemia. And again - hospital, treatment, remission. And then on October 2, 2012 - a new relapse, now with complications. Doctors told me that I need to have a bone marrow transplant. My mom, sister, brother and I went to St. Petersburg, to Raisa Gorbacheva Institute. There, my relatives were tested for donor compatibility, but neither Roma, nor Nastia were donor matches for me. This means we must look for an unrelated compatible donor through the International Registry in Germany. This costs 18,000 euro; the transplant delivery costs another 2,500 euro. Today, my life costs 20,500 euro.
Please help!

With great gratitude in advance,
Anya


 

Update as of May 31, 2013. AdVita fund transferred 2000 euros to Bone Marrow Donors Register to initiate donor search for Anya.

Update as of July 15, 2013. The donor was found to Anya, and bone marrow transplant is scheduled for August 16. Anya's family raised another 1,500 euros for partial payment for the delivery of transplant. The girl is now at home in Saratov, and she feels well, but nervous before the transplantation. On July 29th Anya and her mother are traveling to St. Petersburg. Pre-transplantation chemotherapy will begin after the end of the medical examination.

Update as of July 30, 2013. Anya came to St. Petersburg for the bone marrow transplantation. She is now having a medical check-up before the transplantation. On August 5 she is going to be hospitalized to the Raisa Gorbacheva Institute of Children's Hematology and Transplantology. Anya is feeling ok.

Update as of September 2, 2013. Anya is recovering after the bone marrow transplant performed on August 16. For the first two weeks she had fever. The tests showed fungal infection associated with lower blood counts. Anya is currently on Ampholip.
She is now feeling better, her fever is gone and her blood counts are increasing. Yesterday Anya was allowed to go outside and she is very happy that she can now get a bit of fresh air. Her mood has definitely improved.
There are no signs of GVHD. Anya is on immunosuppressants and hormonal agents. The doses of the latter are gradually reduced. The first puncture has showed remission. The engraftment analysis will be performed at a later date.

Update as of October 3, 2013. The follow-up puncture confirmed a remission. The donor bone marrow has taken root and is functioning well. The girl has a bad GVH reaction involving her skin. She was prescribed hormones, Enbrel, Prograf and Rapamune, as well as photopheresis. The fungal infection is gone, so Ampholip has been canceled. Anya is feeling ok but she put on some weight due to hormones.

Update as of October 23, 2013. Last week Anya was hospitalized at Gorbacheva Institute with the severe skin GVHD. She is being treated with hormones, immunosuppressive drugs, Enbrel and photopheresis. The transplantation of the mesenchymal cells from her mother took place on October 18th.
The therapy was successful: the GVHD manifestations decreased, though an attempt to decrease the hormonal dosage caused another exacerbation of Anya's condition. She receives the hormones in previous dosage currently and feels quite well, but experiences problems while trying to walk.
Before the GVHD exacerbation, Anya asked to be allowed to go home often, but now she is ready to stay at the hospital until the full triumph over the illness. Unfortunately, aspergillosis infection was finally confirmed and Vfend therapy was started.
As for the primary diagnosis, the remission continues, the transplant has engrafted fully and is working well.

Update as of February 4, 2014. According to the results of a puncture, Anya is in remission, and transplanted bone marrow is working well.
At the beginning of January, after hormonal therapy withdrawal, the girl again developed skin GVHD, and the doses of medicine had to be increased again. The dermatologic manifestations are under control now, and to prevent the fungal infections Anya continues therapy with hormones, Prograf and Rapamune, and also Vfend. Obtaining these drugs at her residence is not possible yet, and AdVita fund pays for Vfend.
Until recently, there were severe frosts at Saratov, so Anya spent her time mostly at home: did her homework (she is trying now to study for 7-8th grades), and worked on weaving beads. She feels well and has a good mood.

Update as of March 12, 2014. In February Anya started experiencing strong headaches, as well as nausea, high blood pressure and fever. The girl was admitted to a hospital in Saratov, and examination did not reveal any abnormalities. All symptoms disappeared as suddenly as they had appeared. Now Anechka is at home, she feels rather well. Following attack of the disease she was again suffering from skin GVHD which was controlled by creams and immunosuppressive drugs. Anya continues to take Vfend.
After 20th March Anya and her mother are planning to come to Saint-Petersburg for examination. Head MRI with contrast is planned to be done prior her trip.

Update as of April 9, 2014. Anya arrived in St. Petersburg for examination. The control puncture showed that the remission is sustained. Donor bone marrow engrafted and functions well. Skin and mucosa GVHD flared up again. Anya continues taking Prograf, an immunosuppressant, and Vfend to prevent fungal infection. Lately Anya began feeling worse; she suffers from fatigue, weakness and nausea, and started losing weight. The doctors are trying to determine the reason for it.

Update as of April 2, 2015. In March Anya was allowed to home to Saratov for two weeks. She has already returned to St. Petersburg to continue therapy with photopheresis and undergo surgery to replace her hip joint.
GVHD does not currently manifest itself. Anya feels well, but is worried about the upcoming surgery. Hospitalization at Turner Institute is scheduled for April 9th, and the surgery for hip joint replacement is scheduled for April 14.

Update as of April 23, 2015. It was decided to move the hip joint replacement surgery to May. For now Anya returned home, to Saratov. She follows the doctors' advice and tries to walk without crutches, although it is difficult for her.
Anya feels well and her appetite is improving. She does not have GVHD manifestations at this time, but she is continuing immunosuppressive drugs intake. Anya was finally able to return to her studies: she is going through the 8th grade curriculum with her teachers.

Update as of May 17, 2016. Anya is now at home in Saratov. She was prescribed Jakavi as a treatment for GVHD of mucosa. She is already showing improvement after the first course.
Anya is feeling fine. She is in remission (she had puncture in March) and her blood counts are normal. It has been a year since her hip surgery and she has regained the full range of movement.
Anya is finishing the 9th grade and is now revising for the exams. She likes to spend her spare time with her friends.

Update as of July 4, 2016. Recently Anya traveled to St. Petersburg for evaluation. She is in complete remission in regards to her primary diagnosis, and her blood counts are normal. Due to various circumstances (exams, disability commission) Anya was not able to pick up Jakavi from Advita Fund for about six weeks.
During this unintended interruption in therapy, her GVHD of mouth worsened. As soon as she restarted therapy, her condition improved.
Anya feels rather well and is in good spirits. She finished her finals and received her high school diploma. She is currently enrolling into a vocational school to learn sewing. In addition, she plans to begin cooking lessons in September.

Update as of August 11, 2016. Anna is at home, in Saratov. The GVHD of mucosas is getting better with the treatment. Anna takes Jakafi and Tacrolimus, as well as anti-viral medications. Evaluation in St. Petersburg is scheduled for September.
Anna is feeling well and has no complains. She will start college in September.

Update as of September 19, 2016. Anya came to St. Petersburg for evaluation a week ago. She is in remission in regards to primary diagnosis. GVHD of her skin and mouth is receding, but about 6 weeks ago she developed a flare up of GVHD of her eyes.
Anya is continuing to take Tacrolimus in reduced dose and Jakavi. The next evaluation in St. Petersburg is scheduled for late October. Anya feels well, except for discomfort caused by GVHD of eyes. She studies at Polytechnics College in Saratov.

Update as of October 26, 2016. Anya failed to get the required medication in her region, due to insufficient local budget funds. She takes Jakavi, Tacrolimus, as well as Glivec to treat eye GVHD. Skin GVHD has almost disappeared, while mucosa GVHD persists. Anya feels well. She is now at home in Saratov and glad to get back to her studies. The next examination in St. Petersburg is scheduled for the beginning of November.

Update as of November 25, 2016. Anya is at home. She is continuing to take Jakavi, Tacrolimus and Glivec. Her eyes are gradually improving. She does not have skin GVHD. The next evaluation is scheduled for January - February. Anya feels well and returned to her studies. She missed studying with other students and enjoys it very much. She has good relationships with her peers.

Update as of December 23, 2016. Anna is at home in Saratov city. She doesn't have any GVHD of the skin. The GVHD of her mouth has improved. The condition of her eyes is gradually returning to normal. Anna continues to take the medicine she was prescribed. In late January - early February Anna will go to St. Petersburg for the evaluation. Anna feels well. She is taking final exams in her school. She is also preparing for the New Year holidays. Anna is going to celebrate it at home with her family.

Update as of January 25, 2017. Anya feels well and she will soon travel to St. Petersburg for evaluation and medications. Her skin condition is stable, and she has no symptoms of mouth GVHD. She continues therapy with Jakavi, Tacrolimus and Gleevec. Anya is a very good student, but currently the schools are on quarantine due to a viral infection. The exams are over and the New Year celebrations, which brought Anya much joy, are too.

 

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