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
Milana feels rather well, eats well and walks around. She is bothered
by leg pains due to osteoporosis and takes Calcium pills.
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.
Update as of June 6, 2010.
A donor for Milàna 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!
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.
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.
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.
Update as of December 30, 2011.
Milana is at home. She is feeling well and continues taking Noxafil.
Planned tests are scheduled for January.
Update as of February 22, 2012.
Milana came in for planned tests. She feels well.
Update as of March 1, 2012.
Milana finished tests. She has slight skin GVHD and her liver counts
are somewhat elevated. Mila was taken off hormones and her cyclosporine
doses are being reduced. She was prescribed Heptral and Noxafil
was replaced by Orungal. The next round of tests was scheduled for June.
Update as of April 28, 2012.
Mila had to return to the clinic urgently because of high
fever and dropping blood count. She is undergoing an antiviral
treatment. The temperature is now normal and the blood count
is gradually improving.
Update as of May 11, 2012.
Milana had a cold and is now recovering, her blood counts are getting
back to normal. The doctors allowed the girl to go home for the summer,
and she is so happy about it. The only immunosuppressive drug left to take is
Ñóñlosporinum (to prevent the GVH reaction), the doctors decided tos stop using
the hormones. Milana is taking Nozafil again as a part of antifungal therapy.
Update as of July 10, 2012.
Mila is at home. She feels great. The next evaluation is scheduled for late September.
Update as of September 27, 2012.
Hello! Mila is doing well. She spent summer at her grandmother's dacha. She eats more
fruits and vegetables, but is still on a diet, as she continues taking immune suppressive
drugs. Last week Mila was sick a little, so she is taking antibiotics and getting better.
Mila and her grandma are great together - they sing and dance. Mila learned many songs
by Anna German and Edita Piekha. She is learning to write and is making progress.
Mila often thinks of her friends and wants to see them. Control tests are scheduled for
Update as of November 12, 2012.
Milana and her mother came for a follow-up examination. The girl was
happy to come back to St. Petersburg and see her friends again. Milana
is feeling fine. She is cheerful and very active. There are still some
manifestations of a skin and eye mucosa GVH reaction, but they are
under control. The dose of Ñóñlosporinum is gradually being decreased.
In addition to that the girl is getting antiviral and antibacterial
drugs as well as the antifungal Orungal.
Update as of March 4, 2013.
Milana is now home in Nefteyugansk. Her blood counts are normal.
Mild GVHD symptoms on her lips still persist. The girl continues receiving
Cyclosporine and Orungal. Mila feels good. She plays a lot, walks
outside, and skis.
Just recently, she got interested in the fairy tales by Krylov,
she learns them by heart.
Update as of June 18, 2013.
After Ñóñlosporinum was canceled, in spring Milana had a new attack of the
chronic GVH reaction that affects her skin, liver and mucosa, so the doctors
had to go back to the previous doses of the drug. The girl's liver counts are
now normal, and the condition of her skin and mucosa is better, but in order
to overcome the GVH reaction completely immunosuppressive therapy will have
to be strengthened.
Last week Milana and her mother came to St. Petersburg for a follow-up examination.
The results of the puncture are not ready yet, and the girl is still to have an
external respiration test, but she has already been to the Botanical Garden,
the circus and the theater. In March Milana turned 6 years old. She is a big
girl now. She has serious hobbies too: she like reading and writing, she
spend lots of time drawing and can sing very well. New Milana's photos
Update as of July 19, 2013.
Milana is undergoing treatment for skin GvHD: in addition to Cyclosporine,
the girl was prescribed photopheresis, physical therapy and an immune
suppressive drug Glivec.
Her joints condition appears better, fever has subsided and edemas have
disappeared. Early in the treatment, Mila's hemoglobin level was too low
but it has returned to normal since. Remission on her main diagnosis is
stable, the donor bone marrow is working well.
July 7 marked 3 years since the transplantation, and Milana spent the
day at the attractions and rides at the "Wonder-island",
where she really enjoyed herself. She is feeling well, is in good
spirits and does not miss home yet as she has not had a chance to see
all of her St. Petersburg's friends yet.
Update as of July 30, 2013.
After six photopheresis courses Milana's skin and joints got better,
and the doctors considered it possible to let her go home to her
grandmother's place to the Kurgan Region for two months.
Photopheresis might be continued in autumn.
In the meantime Milana will be taking Ñóñlosporinum and Glivec. Also,
the girl was prescribed Orungal to prevent fungal infections and
ferrum medications to prevent anemia. The girl is feeling better.
She walks and even runs a lot. Mila is not at all willing to leave
St. Pete's: all of her friends are staying there.
Update as of July 25, 2014.
Mila spent the last month in St. Petersburg. She came
here with her mom and her grandma to get
treatment for her chronic GVHD of skin, mucous membranes and joints.
In St. Petersburg Milana has started physical therapy. She was also
administered four cycles of Mabthera and immunosuppressants with
increased doses of Cyclosporine and CellCept in addition to previously
prescribed Glivec. She is also taking Orungal to prevent fungal infections.
The therapy worked, and Mila's skin is looking much better. Her blood
counts also improved, but she is still struggling to walk because of
This did not stop her from enjoying her time in St. Petersburg: she
took a boat trip along the rivers, visited the Divo-Ostrov amusement
park, the dolphinarium and the aquarium.
Milana, her mom and her grandma are going home tomorrow, but they will
be coming back to St. Petersburg in mid-September to continue
Update as of September 25, 2014.
Milana arrived in St. Petersburg for
a control examination. Condition of her skin and joints improved a
bit. Photopheresis was postponed for now. It was decided to administer
a cycle of Mabthera. The first injection has already been given in the
day patient facility of R. Gorbacheva Institute of Hematology &
Transplantation. The remaining three will be given at home, where she
lives, following which the therapy will continue with Enbrel. Milana
also takes Glivec, Cellcept and Cyclosporin, and undergoes physical
therapy. Milana will return to St. Petersburg in January for her next
The girl started school this year. On the first of
September she attended a celebratory assembly at school. At present
Milana studies at home with three visiting teachers. Milana likes
studying very much.
Update as of September 26, 2016.
It has been 6 years since Milana's
bone marrow transplant. She came to St. Petersburg for a checkup which
confirmed remission. She still has systemic sclerosis as well as joint
stiffness because of her skin GVHD. She is also monitored by an
ophthalmologist for eye GVHD and had punctal plugs inserted to
relieve dry eyes. She is still taking immunosuppressants (Glivec,
CellCept and Cyclosporine) and continues physical therapy. Milana
comes for checkups every year. Her next checkup will be in early
Last year she took part in many concerts organized by her music
school. She also graduated from the second grade with straight As and
is really excited about the family’s new Maine Coon Mathilda.
The girl is feeling fine: she sings and dances a lot and organizes
concerts for her friends. She is home schooled and also studies piano
in musical school.
Mila and her mother try to make the most of their time in St.
Petersburg: they have been to "Bears on Buffalos" circus show, as
well as a fairy tale musical "Chudo-Yudo" at the Music Hall that
Milana absolutely loved.
Update as of October 16, 2017.
Milana came to St. Petersburg for a medical examination and
stayed for a month till the end of September.
Everything is fine as far as the primary diagnosis is concerned, but
GVHD of mucous membranes, skin and joints is not subsiding,
unfortunately. Doctors decided to replace Cyclosporine with Jakavi.
Milana has been at home in Nefteyugansk for three weeks already. She
feels well and is active. She saw Swan Lake ballet while she was in
St. Petersburg. She did not like the ballet much
- as she grew, her tastes changed. She is now 10. Milana currently
prefers different music - jazz and Michael Jackson. Nevertheless,
throughout the whole month, while she was in St. Petersburg, she
enjoyed attending yoga and ballet classes at 11th floor of Gorbacheva
When Milana returned home, she was happy to reunite with her cat.
Milana studies at 4th grade curriculum with a visiting tutor and
attends a music school.
Update as of March 28, 2018.
Milana has grown taller and stronger,
and this year she turned 11 years old. She gained weight and muscle
mass in her arms, as she started swimming and has already mastered
several styles. She also learned to dive and do somersaults under the
water. The coach is very proud of her.
Milana is in fourth grade; her teachers visit her at home. She also
studies at the music school. The condition of Milana's joints has not
yet improved: her fingers have limited movement range and not fully
mobile, but the teachers select the music pieces that she can play.
One of the new hobbies is drawing, and she does very well. Milana
continues taking Jakafi, Glivec and Cellcept. Currently, she is
undergoing an evaluation in St. Petersburg.
Milana needs Jakafi that costs over 200 thousand rubles per package.
Please help us raise funds for this medication! New photos of Milana
Update as of April 26, 2018.
Milana had contracted acute respiratory
viral infection recently and is now undergoing treatment at home.
GVHD symptoms remain unchanged. She continues to take in Jakafi and
Mila really wants to go to the swimming pool. She usually has swimming
classes three times a week, but at the moment she has to stay at home
due to the cold.
The teachers don't visit her because of the quarantine with flu, and
Milana also couldn't see the concert organized in the music school.
Mila is restless and is looking forward to going to Shadrinsk with her
grandmother. Meanwhile, she trains her cat to jump through the hoop.
It is snowy in Nefteyugansk, no sign of spring yet, and right now it
would be a challenge to go for a stroll.
Update as of May 23, 2018.
Milana is at home in Nefteyugansk. She
recovered from a cold, but still has GVHD symptoms.
Milana finished the 4th grade with As and Bs. She also visits
swimming pool and music school. Recently she had a recital for the
3rd year of music school.
Milana's grandmother went to Shadrinsk, and Milana plans to visit her
in about 10 days. For now, she is waiting for her medical evaluation
documents to be completed. It is cold in Nefteyugansk - rains and
snows periodically - and Milana is looking forward to warmer weather.
Update as of June 19, 2018.
Ten days ago Milana left for the city of
Shadrinsk to see her grandparents. GVHD manifests itself the same as
before: Milana has symptoms of scleroderma, and she has to continue
taking Jakavi. Before her departure all medical documentation was
finalized and Milana also underwent massage therapy.
In Shadrinsk Milana attends a swimming pool and she even learned to
jump from a diving board. Milana is happy to spend time with her
friends, who have been waiting for her return for a long time. It is
not very warm in Shadrinsk, but everything is in blossom already.
Milana has been helping her grandmother with the garden. The only
thing that makes Milana sad is that her cat Matilda is not around. The
cat was left in Nefteyugansk.
Update as of September 14, 2018.
Milana has arrived to St. Petersburg
for testing and evaluation. Everything is well with her primary
diagnosis, but she continues to suffer from GVHD. The doctors will
confer about it next week.
Milana goes to physical therapy to exercise hand joint contractures.
She received an orthotic wrist split that she must sleep in.
Mila is feeling rather well, but is concerned that she is missing a
lot of school. She is in 5th grade and will have many new subjects
this year. Mila is worried that she won’t be able to catch up with her
classmates. While in St. Petersburg, she went to the circus and a mime
show, where she even went backstage.
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