Hello!
Our family has been hit by bad news. In August 2010 we discovered that
our daughter Anna is severely ill. She is only 22 and already diagnosed
with acute myeloblastic leukemia. Initial symptoms of a disease started
in May. For two months she has been examined in several hospitals.
Due to a wrong diagnosis (B12 deficiency anemia), prescribed therapy
had no effect. Her disease was progressing and when blood counts
became critically low, bone marrow biopsy was done at Almazov
Federal Heart, Blood and Endocrinology Center and Anya was
correctly diagnosed. She was hospitalized. The first cycle of
chemotherapy was not as effective as we hoped. Complications
due to disease appeared. The second cycle of chemotherapy was started.
And remission was achieved after the third cycle.
On April 8, 2011, Anna underwent haploidentical bone marrow
transplantation at Raisa Gorbacheva Pediatric Hematology and
Transplantology Institute, as 100% matching unrelated donor
was not located. The recovery process was difficult due to
mucositis (Anna almost could not eat), acute graft-versus-host
disease, kidney problems, high blood pressure,
pulmonary fungal infection...
Now she feels much better. Donor bone marrow engrafted and
functions properly. Now Anna stays in hospital only during
the day. However, she still need Vfend to overcome fungal
infection, and we do not have money to by even a box of
medication (it costs 27,000 rubles), while Anna will need a
box every week for several months. There are no alternative
to this medication. It's a difficult time for Anna now, both
physically and emotionally, but she is fighting and
hoping for recovery.
We are hoping that we will come across people who
are ready to help Anna.
Update as of May 29, 2011.
Anya is now recovering after a bone marrow transplantation.
She's feeling well. Anya needs Vfend and Valcyte.
Update as of June 11, 2011.
Anya fully recovered after transplantation and was discharged
to day hospital. She still takes Vfend, Valcyte and
feels rather well.
Anya's mom
Update as of July 5, 2011.
Anya's hormonal therapy is being gradually canceled, as skin
GVHD has improved. She is in remission in regards to primary diagnosis,
but the transplant is not functioning sufficiently well yet. Since Anya
still has cytomegalovirus titer in her blood, she needs Valcyte,
and she continues taking Vfend.
Update as of July 31, 2011.
Anechka is now at home. She is monitored as an outpatient and
still has skin GVHD. CMV infection is under control and Anya is
off Valcyte. However, she still needs Vfend.
Update as of August 11, 2011.
Anya has acute GVHD (hemorrhagic cystitis). She has fever and was
urgently hospitalized at the clinic for tests and selection of therapy.
Vfend is still needed.
Anya's mom
Update as of September 11, 2011.
Anya is now at home. Examinations proved she is in remission. Blood counts are
good, no signs of GVH reaction, but she still has problems with high blood pressure.
Anya still needs Vfend.
Update as of November 2, 2011.
Since Anya is in remission and GVHD is under control, hormonal
therapy was canceled. Anya had difficult adaptation period after
long-term hormonal therapy: she had no appetite and was nauseous.
Anya could barely eat and lost a lot of weight.
She now feels much better.
Update as of November 29, 2011.
Anya's condition is improving gradually: her appetite is better and
she began eating. After cancellation of cellcept, she got mild skin
GVHD symptoms, and the medication was restarted. Control tests are
scheduled for mid-January. Vfend is still needed.
Update as of February 8, 2012.
Anya feels well. Her blood counts are normal and she is in remission,
based on puncture results. Skin GVHD is still present. Anya receives
CellCept and Advantan. CT scan is scheduled for February 15th.
Blood tests for infections will be ready by February 20th.
Based on these tests, cancellation of Vfend will be considered.
For now, it is still needed.
Update as of February 29, 2012.
CT showed negative dynamics in the lungs. Reasons are not clear yet.
The two possible reasons are lung GVH reaction or progressing aspergillosis.
Bronchoscopy has been performed, the results are coming in two weeks.
The doctors plan photopheresis. Vfend is still needed.
Update as of March 30, 2012.
Bronchoscopy results showed that Anya's issues with lungs are due to
activation of lung type of GVHD. To fight it, Anya will undergo a course
of photopheresis. She is now awaiting a federal quota for this procedure.
Update as of April 20, 2012.
Anya underwent a course of photopheresis, and another one is planned.
She tolerated the course rather well and had fever only for two days.
Anya is being monitored by a pulmonologist and receives antibiotic inhalations.
She still needs Vfend.
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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