Hello!
I am the mother of a little girl from the northern town of Nefteyugansk. I have
to ask you for your help hoping that your kind hearts won't stay indifferent.
My dear daughter Milana Kuzhenova is 2 years old. She is a very active girl,
an only child in the family.
In May 2009 trouble came to our family: leukemia (acute myeloblastic leukemia, M7,
result of myelodysplastic syndrome).
No one noticed how it all happened: first the diagnosis was "unspecified
thrombocytopenia", then there were numerous examinations. Milana was examined at
a hospital in Surgut, then at the Ekaterinburg oncohematology center. Only a
year later the doctors arrived at the final diagnosis which was myelodysplastic
syndrome, but by that time it had already turned into leukemia. The doctors were
shaking their heads – the disease is very grave.
There was a shock and there were tears but... one had to move on with the treatment,
we want to live and we will live too!!! Our only chance to survive is a bone
marrow transplantation but Milana has no brothers or sisters, and the preliminary
donor search in the international registry did not yield any positive results either.
By now we're already past 4 high dose chemotherapy courses, we are trying to get
on with life and getting maintenance Dacogen therapy. But the doctors say that
time is against us.
The doctors from the Raisa Gorbacheva Institute of Children's Hematology and
Transplantology in St. Petersburg were invited, and another search for a donor
was begun abroad. If it is fruitless again Milana is going to have a haploidentical
bone marrow transplantation from me.
We came to St. Petersburg and have to rent an apartment here since we have
no relatives or friends here. But this problem was almost immediately solved by
the AdVita fund, and my daughter and I were not left alone. We are so thankful to
them for that!!!
I am a doctor, my salary is not high, and I am the only wage earner in the
family. I could not even dream of getting such great help.
Now we live and hope for the best. We believe in our strength, the doctors' expertise
and God's help as well as in good people.
Many thanks to the AdVita fund that does good things and helps people! We hope
for further help and support. Milana's treatment will require great sums of money
which we do not have.
Thank you all very much, God bless you and your families!
Update as of January 10, 2010.
On December 31, Milana started a new course of Dacogen, but she was
still looking beautiful and fashionable for the New Year celebration
in her new dress and with a necklace.
At the end of January, she will undergo puncture. Before the end of
January, the doctors are hoping to hear from the International registry.
If the response is negative, I will be considered as a partially
matching donor.
Milana feels rather well, eats well and walks around. She is bothered
by leg pains due to osteoporosis and takes Calcium pills.
Milana's mom
Update as of January 29, 2010.
Milana is at the hospital where she is undergoing therapy with Dacogen.
She feels well. The results of typing are ready and the preliminary
search will be performed soon.
Update as of February 20, 2010.
The fourth course of Dacogen is over. Milana and I are now staying at the
apartment we rented. Last week's puncture testified to improvements.
Milana's legs no longer hurt (the calcium level is normal again) and she
now sleeps well. Next week we will have blood tests done.
Milana is active and cheerful as usual. She is a very communicative girl
and loves playing with other kids, especially those older than her. When
the weather permits she will go to a park to sledge. Our family sent Milana
her felt boots so now we can stay outside for a long time.
There are very few potential donors for Milana in the international registry,
the search is conducted every week as the data are renewed (the international
database is renewed every day), for now the decision is to continue with
Dacogen since the girl is responding to it very well and to keep track of
the situation with donors.
Milana's mother
Update as of June 6, 2010.
A donor for Milаna was found. Transplantation is scheduled for July 7.
Update as of August 18, 2010.
Milana had intestinal and skin GVH reaction (grade IV). The doctors managed
to cope with the problem. At present only residual effects of GVH reaction
remain on mucous membranes. Milana is now in hospital under the doctors'
control and is feeling ok.
Update as of October 6, 2010.
Currently Milana does not have GVHD symptoms; she is gradually taken off
hormonal therapy. At the same time she underwent a course of photopheresis
to prevent a GVHD recurrence after cancellation of hormonal therapy. If the
cancellation of medications would not lead to any complications, she could
possibly go home. She is in remission.
Update as of November 14, 2010.
After cancellation of hormonal therapy, skin GVHD flared up again,
and the same dosage was restarted. A cycle of photopheresis is planned.
Milana walks, exercises and feels well.
Update as of December 9, 2010.
Milana was confirmed to be in a complete remission. She will be taken off hormonal
therapy, and GVHD is under control. Mila was discharged for outpatient monitoring.
Update as of December 27, 2010.
Milana is now monitored at the day hospital. She takes Vfend and
hormonal therapy. She feels well and is in a holiday mood.
She walks around, studies alphabet and gains her strength.
Recently she decided to become a dancer and started learning
to dance. We are wising Happy New Year and lots of happiness
to everyone who has helped us and continues to help. Thank you!
Milana's mom
Update as of February 28, 2011.
Milana's steroid therapy was canceled, and as CMV titer went down to
normal levels, she was taken off Valcyte as well.
She recently was sick with a viral infection and during antibiotics
therapy, her liver counts increased.
Vfend was temporarily stopped. Mila feels well.
Update as of March 17, 2011.
Due to viral infection, Mila developed intestinal GVHD, grade IV,
with internal bleeding. It has been taken under control with
Campath and Remicade.
Mila now needs infusions of large doses of immunoglobulins.
Update as of March 28, 2011.
The situation with the intestinal GVH reaction is now under control
but tests show that GVH reaction is very likely to come back so the
Campath and Enbrel treatment has to be continued.
Update as of June 4, 2011.
Mila was discharged for outpatient therapy. She has no symptoms
of GVHD and feels well. She needs long-term therapy with Noxafil,
a bottle a month (it costs 40,000 rubles).
Update as of June 25, 2011.
Milana is feeling fine. The doctors monitor her condition in day care.
Hormones dose is being gradually reduced. She still needs Noxafil.
Update as of July 23, 2011.
Mila is doing well. She is still monitored as an outpatient.
The doctors are gradually reducing hormonal therapy doses.
She also takes CellCept.
Update as of August 9, 2011.
Mila's doses are being reduced. She feels well, and is in a great mood.
Mila loves going for walks, biking and walking in the Botanical gardens.
Mila's mom
Update as of September 15, 2011.
Mila is still being monitored at the day hospital. Her doses of hormonal
therapy are being reduced. Mila feels well and is very active.
Mila's mom
Update as of October 3, 2011.
We would like to thank AiF-Kind Heart fund for buying 2 packs
of Noxafil for Milana for the total
of 99,800 rubles.
Update as of October 22, 2011.
Milana was allowed to go home for a month.
She feels well, but still needs Noxafil.
Update as of October 30, 2011.
Hello! We are already at home. Mila feels well and misses
Botanical Gardens from St. Petersburg. We are very grateful
to our doctors and hospital personnel, AdVita fund and all
the good people who showed their support. Stay well! Mila's
control tests are scheduled for December - January. She
continues taking hormones, but in very small doses, for
prevention of skin GVHD. She takes Cortef as replacement
therapy. She also still takes Noxafil.
Mila's mom
Update as of December 30, 2011.
Milana is at home. She is feeling well and continues taking Noxafil.
Planned tests are scheduled for January.
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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