Hello!
My name is Elena Vlasova. My daughter Varya is seriously ill.
She is only one year and ten months old now. She got sick in November 2010,
when she just turned one year old. She was taken to Kaluga Regional Pediatric
Hospital with the diagnosis of high risk acute lymphoblastic leukemia.
Unfortunately, high dose chemotherapy for such a little girl was not
possible in that clinic.
We were referred to R. Gorbacheva Institute of Hematology and Transplantology
as bone marrow transplantation was discussed in the long view.
In July we were called in to Pavlov Institute of Pediatric Hematology and
Transplantology for an examination. Varya and her brother had HLA-typing,
but her brother didn't match as a donor.
Then the problem was finding a hospital could administer Varya high dose
chemotherapy. Neither R. Gorbacheva Institute of Hematology and Transplantology,
nor Russian Children's Clinical Hospital in Moscow had a quota for us
and could not accept us at short notice. To strictly follow the schedule,
the specialists from Gorbacheva Center agreed with Pediatric Oncology
Department of City Hospital #31 in St. Petersburg that they would take
Varya for a cycle of therapy while being in contact with the
transplantologists.
By now Varya finished seven chemotherapy cycles out of nine scheduled.
After all of them are over, then the need for transplantation will be
discussed once again. We thank God for bringing us to St Petersburg!
We remember how our local hematologists in Kaluga were dismayed.
And we see how consistent is the work of St Petersburg doctors and
we understand that the treating doctors consider the peculiarities of
Varya's disease, and work hard to overcome the most severe complications -
for instance, central venous thrombosis that Varya developed after
chemotherapy. We believe that in St Petersburg Varya will be cured.
But City Hospital #31 is a municipal clinic and has no federal quotas.
That is why the treatment there is not free for us and we can't afford
it any longer. At present we are being treated under a guarantee
letter from AdVita fund. I thank them for stretching their helping
hand to us! We ask our supporters to help Varya finish her treatment.
She is still so young! And the doctors believe she has all the chances
to grow up into a healthy adult. We will be grateful for any help!
Home address:
Kirova str., d.64, kv. 22
Kaluga 248001
Contact phone numbers:
+7 (911) 133-14-64 (Varya's mom, tel. in St Petersburg)
+7 (930) 752-86-30 (Varya's mom, tel. in Kaluga)
+7 (910) 592-62-21 (Varya's mom, tel. in Kaluga)
Update as of August 31, 2011.
Varya is undergoing the 3rd chemotherapy cycle at Municipal hospital No.31.
It is her 8th cycle since she started treatment. On August 22nd, bone
marrow biopsy showed 2.5% of blast cells, and 3.3% of myeloblasts.
The doctors are offering to administer one more cycle of chemotherapy
and then discuss further treatment based on results from it.
Varya is now not feeling very well. Despite all precautions, she had a
reaction to asparaginase. She has fever and she cries a lot and is very
cranky. She is also developing stomatitis.
The doctors recommended to treat stomatitis with Ampho-Moronal suspension,
but it is not available in Russia. There is another problem: Varya eats
very little. She needs nutrition Nistagen or Nutrilon Junior,
120 g every 3 hours.
Varya's mom
Update as of September 20, 2011.
Varya completed 9th cycle of chemotherapy that was postponed by 4
days due to low blood counts. She does not feel very well now -
she is worried and does not sleep well. On September 19th she
will have the last puncture under the treatment protocol and
then she will have tests for minimal residual disease.
Based on results, bone marrow transplantation will
be discussed.
Varya's mom asked us to express her gratitude to everyone who
has been helping her daughter, and especially members of
St. Petersburg's Parents forum who have supplied them with
clothes and food.
The first bill for 343,803 rubles was paid, and we received a
second bill for 259,240 rubles. Please help!
Update as of September 26, 2011.
The main chemotherapy regimen is over, but Varya is still in cytopenia
and control puncture was postponed. Based on results of puncture and
test for minimal residual disease, the need for bone marrow transplantation
will be evaluated.
Update as of October 14, 2011.
Based on the first examination results Varya is fine. The doctors
are awaiting the cytogenetics results to determine further treatment
tactics. Varya is feeling ok but she hardly eats anything as she
has no appetite at all.
Varya's mother is now getting treatment for
her hepatitis and cholecystitis.
Update as of October 19, 2011.
Transplantologists believe Varya should have a bone marrow
transplantation done because the risk of a relapse is still high,
even despite the fact the girl is now in remission with only
0.6% of blasts. Varya's brother is a fully compatible donor.
Since Varya's mother refused to have the transplantation performed
the girl is starting a maintenance chemotherapy protocol on October 24,
with Metotrexate and Purinetol (pills).
The girl's condition will be monitored by the hematologists and if
the first signs of a relapse appear transplantation will be performed
right away. The doctors thing that Varya can get maintenance drugs
and have all follow-up tests done in her tome town of Kaluga.
The final calculation of the expenses associated with Varya's
treatment in Hospital 31 will be ready in the next few days, and
as soon as we get it we will publish it here.
Update as of October 28, 2011.
We received a final bill for Varya's treatment at Municipal
hospital No.31 for 165,370 rubles. Please help us with paying it.
Varya's mom decided to continue monitoring her in St. Petersburg.
Planned tests at Municipal hospital No.31 will be covered by
Alyosha charity. Varya feels well.
Update as of November 29, 2011.
All bills for Varya's treatment are currently paid.
She was discharged from the hospital and receives maintenance
therapy with purinethol and methotrexate. She feels well.
Update as of December 25, 2011.
Varya's liver indicators were heightened despite liver protecting drugs.
She is now getting better as her liver recovers. She is in remission.
Update as of January 25, 2012.
Varya feels well. She regularly comes for tests and undergoes maintenance
chemotherapy. Her liver indicators are stable now. Until February 15th Varya
and her mom are staying at Rehabilitation Center in Olgino.
Update as of February 6, 2012.
Varya has been examined at the Children's Infections Institute and diagnosed
with acute cytomegalovirus hepatitis. She will only be able to resume chemotherapy
after the treatment course. Treatment prescribed: Neocytotect 10 ml intravenously
in hospital; Ursofalc (liquid) 125 mg a day; Elcar.Today Varya was admitted to City
Hospital 31. The Alesha charity fund agreed to pay for the hospital and acquired
Neocytotect (4 bottles, 5th coming). The promised to buy Ursofalc too. The treatment
course begins tomorrow.
Varya's mother
Update as of February 20, 2012.
Varya is at the hospital where she is treated for CMV. Her transaminase counts improved
right away. The last test for CMv was negative and her blood test was normal. Varya is
continuing maintenance chemotherapy.
Update as of March 11, 2012.
It has been two weeks since discharge from the hospital (Varya was hospitalized on
February 6-21). At discharge, her ALT was normal. On March 5th we went for another
round of tests at the hospital. We continue taking Purinethol, methotrexate, ursofalk,
Hepa-Merz, and essenciale.
Varya's mom
Update as of March 15, 2012.
After evaluation on March 12th, Varya was added another medication,
Creon. Varya feels well and her liver counts had improved but remain
higher than normal.
Varya's mom
Update as of April 6, 2012.
On April 2nd we went to the examination at the hospital.
The CBC results are pretty good, but leukocytes are low
(due to maintenance chemotherapy) and transaminase levels are
heightened again. So Varya was prescribed heptral and we will
repeat ALT test in a week. If there is no improvement, she
would need to have more tests for viral infections.
Varya's mom
Update as of April 19, 2012.
On April 16 Varya saw the doctor and had her blood count done.
Because the transaminase counts are still rising (in spite of
Geptral and Ursofalc which Varya is taking on a regular basis)
the girl will have another blood count done next week. The clinical
blood analysis is normal.
Update as of May 11, 2012.
At present Varya's blood counts are normal. Varya is still undergoing maintenance
chemotherapy. Biochemical blood analysis shows the transaminase count 6 times higher
than normal (and a little worse than before). The ultrasound shows that the liver and
spleen have increased in size, so Varya needs Geptral, Ursofalc (suspension) and No-Spa.
On top of all that, she also needs the Purinetol anticancer drug (1 pill per day).
Varya's mother
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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