WE WOULD LIKE TO ASK NATASHA'S SUPPORTERS TO SEND THEIR DONATIONS TO
ADVITA FUND IN US.
THANK YOU!
I am asking to help my daughter, Natalia Kudryavtseva,
who turned 18 on September 6, 2010.
In 2002, when she was 10, she was diagnosed with acute
promyelocytic leukemia at Children's City Hospital ¹ 1 in St.
Petersburg. At the time she had different parents who did not
take care of their daughter and did not treat her from a
terrifying, but a curable disease. Natasha did not finish
the therapy. A year later her father died, and a year after
that, her biological mother was deprived of parental rights.
Natasha was sent to an orphanage.
The years after the hospital her life was terribly stressful,
which adversely affected her health.
In 2007 she had a relapse of the disease. In the summer camp,
where Natasha was sent by the administration of the orphanage,
she had a heavy bleeding. An ambulance took Natasha to the hospital.
There, at a hospital, I found my future daughter. She didn't cry.
There was no point. There was no one to feel sorry for her.
When I asked what the girl needed, all the doctors said the same:
that the state in which she was in (horror, panic, despair),
would not let her win.
I was too weak to leave. We lived in the hospital for 9
torturous months. During the treatment, due to fungal infection,
Natasha lost an eye; chemotherapy weakened her heart; medications
in the treatment protocol caused her to suffer pain that did
not respond to any pain relief… After that there were 2
years of maintenance chemotherapy, isolation from society
because of reduced immunity, studying at home: Natasha
completed three grades in a year to catch up with her peers.
In March 2010 I adopted Natalia Mikhailovna Myasnikova
and she became Natalia Yaroslavovna Kudryavtseva.
We hoped that we had won.
This September, Natasha was able to return to a normal
life of a seventeen-year-old girl. On September 1 she
was happy as a first-grader.
Natasha is now monitored at Hematology unit of Almazov
Research Institute. November's tests revealed the
urgent need to undergo therapy with a drug called
Trisenox.
If my daughter does not receive this treatment, the
recurrence of the disease is inevitable. It will be virtually
impossible to overcome, as Natasha already underwent two
different chemotherapy protocols, and the chances that
she will respond to same therapy for a third time are very low.
Unfortunately, this medicine is not registered in Russia.
It cannot be used in Russian clinics, but undergoing this
therapy is possible in Germany.
After consideration of several offers, an option offered
by Klinikum der Munchen Universitat (Grosshadern,
Marchioninistr. 15, 81377, Munchen) appeared most affordable.
Therapy there costs 113,000 euros.
The life of my daughter started again just 3 years ago.
She wants so much to live, live the life of an ordinary girl,
leaving the nightmares in the past!
I am pleading you to help my daughter!
Veronica Kudryavtseva (mom)
Home address:
194021 St. Petersburg,
ul. Khlopina, 9-3, kv. 88
Contact phones:
+7 (812) 535-51-87 (home)
+7 (921) 382-19-45 (cell)
Update as of October 3, 2007.
Natasha's therapy is proceeding on schedule. We would like to express our sincere
gratitude to Veronika for her constant and invaluable help! Natasha lives in
orphanage and she has no close relatives that could care for her during
chemotherapy. For that reason, Natasha needs help with paying for a
caretaker's services (approximately 10,000 rubles during each block).
Those interested in helping Natasha are asked to call Dmitry (whose phone
number is published above) or call +7 (901) 30-88-728.
In addition, Natasha needs help from blood donors with blood type II(-).
Update as of November 1, 2007.
Hello! My name is Veronika and I care for Natasha. I would like to thank all those who responded to our request
for help: Anna Demidova, Alexei Rubtsov, V. Dudinskaya, Evgeniya, A. Krutilina, Smile (who helps others too), I. Stepin, Nelly Mikitaninets,
Jacob Alber, our new friend from US, and Boris Efroimsky.
Yesterday we started very difficult third high-dosage chemotherapy block. Natasha is a very emotional girl and she is learning to overcome
her fears and her pain, very severe pain.
She is now smiling more and more importantly, she really wants to live! I know that her belief in the better future and your help will make
her dream come true.
Update as of November 11, 2007.
Natasha is completing the last chemotherapy block, which will be followed by four mini-blocks. We would like to thank her supporters
who gave money to Veronika to pay for nurse's services for the last block. Natasha's treatment is proceeding as planned.
Update as of November 24, 2007.
Natasha suffers from a complication, loss of vision on one of her eyes.
For now the reason for that is unclear as the MRI scan showed no lesions in
her brain. The complication may have been caused by an infection.
Natasha is being tested to verify the reason.
Update as of December 5, 2007.
After a consultation of ophthalmologists, neuropathologists and mycologists, a decision was made to transfer Natasha to Mycology
Research Institute to find the right therapy for her.
While she is waiting for the transfer, which should happen in 10-14 days, Natasha needs to take 3 capsules of Vfend (200 mg each) a day.
A package of this drug lasts 4.5 days and costs 28,350 rubles. Pleas help Natasha purchase Vfend!
Update as of December 8, 2007.
Next week, Natasha will be hospitalized at Deep Mycosis Research Institute for testing and treatment.
Update as of December 13, 2007.
Natasha was transferred to Mycology Research Institute for further testing.
The reason for the loss of vision in one of her eyes has not yet been determined.
Update as of December 17, 2007.
Natasha is on treatment at Mycology Research Institute. The opinions regarding the loss
of vision in one of her eyes are very contradictory. At this time, the doctors are
attempting to save her eye as an organ. They do not expect her vision to return.
The growth of the fungal infection in Natasha's blood had halted, but its percentage
is still the same. She is continuing to take Vfend. Natasha cannot receive therapy
for her main illness until she clears aspergillosis from her blood. She still has
to undergo a very difficult chemotherapy block.
Thank you very much for helping Natasha! Your help is very important to her.
Natasha, as a 15-year-old, is still essentially a child. It may be due to her not
having a normal happy childhood. She gets sincerely surprised that people whom
she never met come to her rescue.
Thank you very much for restoring her faith in people!
Veronika
Update as of January 13, 2008.
Natasha was discharged from the Mycology center on December 27th because it
was closing for 10 days of the holidays. In reality, Natasha was not getting any
treatment; she was just able to take Vfend while she was there. On December 28th
Natasha was admitted to the Children's hospital No.1, but she was allowed to go
home for the holidays right away with the supply of Vfend. On January 10th
Natasha was supposed to start chemotherapy block, but unfortunately the hospital
was out of Cytosar, as it was the beginning of the fiscal year. We returned home.
Regarding fungal infection, as of December 27th Natasha had aspergilla titer of 0.58,
which is very close to the normal range (0.5). Hopefully, by now it is even lower
because Natasha was taking Vfend all this time.
Happy holidays to everyone!
Veronika
Update as of January 16, 2008.
Natasha needs to start chemotherapy block as soon as possible. During
this block, she has to take Vfend to prevent a relapse of aspergillosis.
A package of Vfend costs 28,000 rubles and lasts a week. Natasha needs at
least three packages.
Update as of February 5, 2008.
Natasha completed another chemotherapy block. Her cytopenia was very severe. For the first time,
her leukocytes dropped to 0.2. For several days she resisted infection, but finally developed high
temperature, which was to be expected. She had to undergo antibiotics therapy and receive Neupogen
injections to stimulate cell production. She is now gradually improving.
Natasha still cannot see with her eye. After she exits cytopenia we plan to consult with Professor
Boyko at Military Medical Academy, who is a well-known specialist in this area. Natasha's eye is
getting smaller, as her vitreous body is developing adhesions, which will be more and more noticeable
with time. Her retina had detached completely. She needs an operation to replace the vitreous body.
The problem is that it is hard to find a surgeon who would agree to replace it without removing
the lens. We have high hopes for Prof. Boyko. If he agrees, there is still a hope that Natasha's vision
in that eye returns partially, if not completely.
Since any operations for our children are possible only after completion of treatment and Natasha
still has two more years of supporting chemotherapy, she needs to obtain recommendation from the
oncology specialists for this operation. She cannot wait two more years, as her eye would close and
dry out and it will be impossible to save it.
We are waiting for her exit from hypoplasia to start consulting with the specialists.
We are endlessly grateful to all AdVita fund supporters for their constant support and
help in everything!
We would also like to thank the Russian Help Fund that helped to raise funds for Vfend purchase.
Only with our combined effort we can save the lives of our children.
Veronika
Update as of February 11, 2008.
We are very grateful to Yulia for helping to pay for the sitter's services!
Veronika
Update as of February 13, 2008.
A decision was made to offer Natasha allogeneic bone marrow transplantation. That
requires raising funds for donor search at the international bone marrow registry
(15,000 euros) and delivery of transplant by courier (2,500 euros).
Update as of February 20, 2008.
On February 15 Natasha had a consultation with Professor Boyko. He is ready to perform the
operation on her eye. The operation is planned for March 5th. Since Military Medical Academy is
a federal clinic, the operation has to be paid for by the patient. The preliminary cost estimate
is 35,000–40,000 rubles.
This is a significant amount, but it is nothing compared to opportunity to save Natasha's eye!
Natasha is very scared and she cries, but she understands that it is necessary. We are enormously
grateful to AdVita fund and all the supporters for continuing help in our struggle.
Veronika
Update as of March 17, 2008.
Natasha's operation was postponed again. Unfortunately, Professor Boyko broke his arm. With Vfend
the situation is as follows: AdVita fund purchased one package of the drug, while Russian Help
Fund purchased 7 packages and AiF-Kind Heart fund bought 16 packages. This should last Natasha four
months of therapy (she needs 3 capsules a day). We are enormously grateful to all the supporters!
We are also sincerely grateful to AiF-Kind Heart fund and Margarita Shirokova personally for agreeing
to pay for the search for the donor for Natasha at the international bone marrow registry.
Update as of March 30, 2008.
Since Professor Boyko will be out of commission for awhile, we decided to consult with the
leading specialists in ophthalmology in our city: Professor Somov and Professor Astakhov.
They both were unequivocal about serious risk of the operation that can cause critical
infection. In their opinion, the eye surgery will only speed up the process of eye
degeneration. We are now waiting for Professor Boyko's recovery to assess the operation
risks.
On April 7th we will be admitted to Children's hospital No.1 for planned two-week
chemotherapy (re-induction). After the chemotherapy, we will continue searching for
the resolution of the situation of Natasha's eye.
We are very grateful to AdVita fund for their continuous support. We would also like
to thank AiF Kind Heart Fund and Margarita Shirokova, Natalia Boyarkina and Rafael
Karapetian personally for the timely help and an article about us. We are very grateful
to all our supporters who are taking part in saving our children. Thank you!
Veronika
Update as of May 9, 2008.
Hello! On April 23rd we were discharged home after re-induction at Children's
hospital No.1. During the course and for a few days afterwards, Natasha had severe
headache, but it went away eventually. Unfortunately, during the course, Natasha's
problems with her eye recurred. She had severe tearing, photophobia, developed stuffy
nose on the side of the affected eye, then cough. We really hoped that with decrease
of chemotherapy drugs' concentration in her blood, Natasha's eye will gradually
get better, but it did not happen…
After a visit to an ophthalmologist on May 6th Natasha was diagnosed with iridocyclitis
and sympathetic ophthalmia, which means that by now the anterior chamber of her eye is
lacking and there is an acute risk of the disease spread to the second eye.
Natasha's eye needs to be urgently removed and she needs eye prosthesis. Unfortunately,
the kind of prosthetic device we need can only be installed in Europe. We are now in
talks with the clinics in Germany regarding possibility of such treatment there.
We are very grateful to everyone, and especially to AdVita fund, for
everything you are doing for us!
Veronika
Update as of May 30, 2008.
Hello everybody!
Our discussions with the clinics in Europe and Israel led us to the amount
of 20,000 euros. This is an enormous amount for us. We started to look around
for the money. At one point we came to Military Medical Academy, where they
still had the money we transferred earlier for Natasha's operation.
Professor Boyko (God bless him!) happened to walk into the hall. He recognized
us. I asked him to examine Natasha, and he did. He confirmed all our concerns
and told us that they do not perform the same procedure as in Europe, but they
use a different technology that produces essentially the same result.
In Tuesday Natasha was operated on her eye. The eye removal stage was performed
in St. Petersburg. S.Sosnovsky, doctor of Military Medical Academy, cleaned out
the contents of Natasha's eye, left only the orbit of the eye and then inserted
an implant. After the scarring occurs, we plan to install a thin-walled prosthesis
that will create an appearance of a regular, moving eye.
Natasha had a difficult time coming out of anesthesia, but she did very well.
We have to recognize the employees of Military Medical Academy who were very
sensitive and caring towards Natasha.
She now uses glasses with holes, because during the operation her eye muscle had
to be cut and then stitched again. To limit the movement of the operated eye, a
hole was cut for the healthy eye, so that Natasha can look through it and move her
head rather than her eye (because eyes move in parallel).
Now we go to checkups daily. Today Natasha had to have a shot in her eye, which
really stressed the girl out. We managed to deal with it too.
Thank you for your prayers. I am certain that they keep us afloat. Thank you for
every thought about us!
Veronika
Update as of August 13, 2008.
Hello! The post-operative healing process is still continuing. Usually it lasts
2-6 months. Considering the fact that Natasha takes supporting therapy drugs
designed to lower leukocyte counts, she will not set a record in healing speed.
We are currently at Children's hospital No.1 at the second planned re-induction.
Natasha takes Vesanoid, which helps the new bone marrow cells grow properly.
This course is supposed to last 15 days. After that we plan to go to Moscow
for manufacturing of the thin-walled eye prosthesis. Natasha will be made
a "contact lens" with a pupil drawn on it. This will create an effect
of a healthy eye.
Unfortunately, current hospitalization brought us some worrying news. The
immunophenotyping test for the minimal residual disease showed that Natasha has
three defective cells in her bone marrow. This test calculates the genetic
development of the young cells. It discovered three cells that are genetically
unable to become neither leucocytes, nor erythrocytes, nor thrombocytes.
Therefore, they will remain as blasts.
For us it indicates that a relapse is possible. It is known that bone marrow
transplantation has less favorable prognosis if performed during a relapse.
In addition, there are no guarantees that Natasha's body once again responds the
same way to chemotherapy. It means that today we still have a question: How
much time do we have?
After the re-induction, we will repeat this test. There is a chance that these
three cells will develop due to effect of Vesanoid. This is the only thing we
are praying for now.
Nevertheless, Natasha is feeling well. Previously, she did not like to wake up.
She was even given a magnet for the New Year with a sign "I demand to outlaw
the mornings!" Now she wakes up with a smile. She enjoys every day, smiles
and often laughs contagiously! She really loves her life and bravely deals with
her misfortunes.
I would like to thank everyone who has been supporting us close to a year now.
We are very grateful to employees and volunteers of AdVita fund. Our thanks to all
the donors who are helping us fight!
Veronika
Update as of November 10, 2008.
As we planned, after the second re-induction, we went to Moscow and Natasha
had lens installed in her eye. We were warned that it may not be a perfect color
match the first time. The lens is indeed somewhat off in color, but this issue
will be fixed after the next lens is made for Natasha.
From October 6 to October 22 Natasha underwent another planned re-induction at
Children's City hospital No.1. The medication that she takes improves the
situation with the minimal remaining illness, but has not brought her to
the zero yet. The doctors are now actively discussing the strategy
for further treatment.
The problem is that there is a medication (Trisenox) that is actively used in
USA, but not in Russia.
It is not yet certain whether this medication will work for Natasha.
At the end of November, E. Boychenko,
the head of Leukemia Chemotherapy Unit of Children's hospital No.1, will travel
to the conference of oncologists and hematologists in Moscow, where this issue
will be discussed.
The next re-induction is scheduled for December 8th.
Based on the results of morphological analysis, Natasha is now in deep remission.
Unfortunately, no one can predict how long it will last.
Natasha is now readily preparing to resume her studying. She is in a very
optimistic and positive mood.
Veronika
Update as of February 27, 2009.
Hello! Natasha underwent two more 2-week-long re-inductions in December and February.
She is also receiving a course of supporting therapy, which will last another year.
We received results of bone marrow testing from Moscow. They confirmed complete remission.
During treatment, Natasha's heart ejection fraction was found to worsen. She was recommended
therapy with Qudesan, which indeed improved the heart function.
Natasha started studying. The learning process is rather intensive. We had to invite tutors
for practically all subjects to complete studies for three years within just 8 months.
Natasha gets tired, but she tries very hard. Due to a serious workload, the vision on her
healthy eye fell to -2.75. She now takes a few medications to support her vision.
We are grateful to administration of the fund "Aif-Kind Heart" for the financial
support they provided Natasha with.
We are grateful to everyone who thinks about us. We are enormously thankful to everyone
from AdVita fund.
Update as of December 13, 2010.
Natasha now has new last name - Kudryavtseva!
Update as of December 17, 2010.
Hello!
My name is Natasha Kudryavtseva (Myasnikova).
I have been fighting leukemia since 2002.
On September 6th I turned 18, but unfortunately my
coming of age brought a new challenge.
Based on test results, it was discovered that my disease
is advancing again. A genetic mutation t(15;17) was seen,
and it means that a relapse is near.
The only medication that can help in this situation is
Trisenox. Unfortunately, it is not registered in Russia
and I had to turn for help abroad.
Their conclusion was that I need to start therapy urgently.
I tried to get into clinical trials that are using Trisenox,
but unfortunately they are completed in Germany, and it
takes months to get enrolled into a trial open in the US.
Only the specialists in Munich clinic were ready to take
me in immediately, but the bill, even discounted,
is enormous - 113,000 euros.
This amount can give me a chance to continue living!
I was so hopeful that I was able to overcome my disease,
I was so happy that I returned to normal life and could
make plans for the future… I am now turning to you
for help! Please do not pass by.
Natasha
Update as of January 30, 2011.
Dear donors, all information about funds raised for Natasha's
treatment is available
here
and is being continually updated.
Update as of May 3, 2011.
The tests did not confirm chromosomal abnormality again.
The next visit to the clinic in Munich was scheduled for June 28th.
Natasha feels well and she returned to school.
Update as of July 1, 2011.
Natasha had a follow-up examination. Remission was confirmed.
The next examination is in the end of November. Natasha is feeling fine.
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