Good day!
My name is Anna Ahmedshina, I have a daughter - Nastia Konycheva. She is 16
and was diagnosed with nasopharyngeal neuroblastoma. We are from Astrahan
city. Nastia always was an independent, social girl and a good student at
school. She spent summers in a countryside camp, went swimming in а river
with friends.
Nastia finished 9th grade and entered the Astrahan's Social Pedagogical
(teacher training) college. She was a head of the group.
At the end of the first year, in May 2009, the first symptoms of the disease
appeared: nosebleeding for 5 days, bulging out of the right eye, stuffed
nose, severe headaches, fatigue and sleepiness.
We consulted doctors, who suspected frontal sinusitis. After examination
they found out a malignant tumor. It was a shock for our whole family. Our
life split up in two: before and after the disease. But the doctors in
Astrahan could not determine an exact diagnosis.
The tumor grew fast: the swelling spread to the left side of Nastia's face,
the pains became intolerable, and anaesthetic's action lasted for only 3
hours. Nastia felt burning sensation in her nose and in 2 months she lost
10 kg.
We were recommended to go for examination and treatment to Petrov Oncology
Institute in St.Petersburg. Our friends, relatives and colleagues raised
money to cover our expenses for transportation and accommodation. At this
moment, the diagnosis verified, and Nastia has received the first course of
chemotherapy. We don't know anyone in St.Petersburg. It is very scary to be
alone with your grief in a strange city, where there is no support and help
of your close ones. I do not work at this time, and my daughter took a year
out from college. We exist on a salary of my husband. Our family hopes for
help of kind people who can feel other person's grief. We are deeply
grateful to everybody who supports Nastia. Together we are strong! I believe
and hope that my daughter will recover, and I'm praying for it.
Thank you!
Update as of August 24, 2009.
My daughter finished the second round of chemotherapy. She feels OK, eats well, and we
try to go out with her every day.
After the second round, her lymph nodes have gotten normal (before she had a
chain of enlarged lymph nodes from her right ear to her collarbone), she can
breathe through her nose (on both sides), has no discharge from her nose, the
exophthalmos of her right eye (bulging out of the eye) is getting slowly better,
and she no longer suffers from headaches and pain in her eye.
Nastia started believing in the medical treatment. "I will definitely
get better!" - she says. Last Saturday, on August 22nd, we took children to
the Japanese restaurant. We had a very interesting and learning experience visiting
the hot cooking area and a bar. We saw all the inner workings of the restaurant
and met the personnel.
The children cooked the meals themselves and then ate them.
My daughter was very excited! On our way there we enjoyed the city views. She had
lots of happy memories from that visit. And that is very important for Nastia's
and other children's recovery.
On behalf of all the kids on treatment at Petrov Oncology Institute I would like
to thank the organizers of our trip!
Nastia's mom
Update as of September 25, 2009.
Nastia is getting ready for the fourth round of chemotherapy and feels
well. She is very interested in art and visited the Avant-garde Art
Museum.
Update as of October 20, 2009.
Nastia is undergoing the fifth round of chemotherapy and does not
feel very well. She is planned to have one more round, followed by
bone marrow transplantation at R. Gorbacheva Institute.
Update as of October 28, 2009.
When will this hard time be over? Nastia had 5th round of chemo and the
following complications: severe stomatitis, tracheitis, and otitis of
her right ear. Once she is over one thing, the next day something else
makes her sick. The diseases literally stick to Nastia, as her immune
system is very weak.
Nastia gets very upset: "Mama, what is wrong with me? When will I get
well?" How hard it is to look in her eyes and be unable to help.
I am trying to explain to her that she needs to be patient, as we are on
treatment and need to follow doctors' recommendations, and that she will
get well after some time. I am also telling her that even though the treatment
is difficult, we are slowly but surely moving towards recovery.
Nastia's mom
Update as of November 15, 2009.
On November 15th we were discharged. We live in a rented apartment. Nastia
feels very well. Yesterday we went to a concert of Zapashny brothers at
Yubileiny stadium. Nastia had lots of positive emotions!
We were very happy to see such a great show. We are now looking into Nastia's
going for the 6th chemotherapy round to R. Gorbacheva Institute.
For now, Nastia is visiting a dentist at Pesochny clinic.
Nastia's mom
Update as of November 18, 2009.
From November 18th to November 21 we will be on tests at R. Gorbacheva
Hematology Institute. Nastia had blood tests and will have several other
examinations: ultrasound of her oropharynx and internal organs, and an x-ray.
We are scheduled for the bone marrow puncture for November 21.
Nastia's mom
Update as of December 22, 2009.
From December 1st to December 15th we stayed at the Raisa Gorbacheva
Institute where we got the 6th chemotherapy block. On December 15th
we were discharged, and should be back in hospital on the 25th for
the 7th block. Then stem cells harvesting is to follow. After that
it is either autotransplantation or another chemotherapy block
first to reduce the tumor burden.
Nastia is feeling fine, she's eating well and is in a good mood.
Many thanks to the Children's Hospice organization that gave us
tickets to the Ice Palace for an ice-skating show and to the Priyut
Komedianta theater for Balzaminov's Marriage performance.
Nastia and I liked it a lot.
We are very grateful to Yulia who visited us in hospital, helped
us with money and brought us fruits.
December 26 is Nastia's birthday! Now more than ever we need
support from good people as a very serious procedure like
autotransplantation is in store for us.
And thank you AdVita fund for finding the place for us to stay
close to the Raisa Gorbacheva Institute!
Nastia's mother
Update as of January 22, 2010.
Nastia was hospitalized at R. Gorbacheva clinic. Nastia is in
a good mood and feels well. After previous chemotherapy cycles,
the tumor mass shrank significantly, although she still has
cancer cells in bone marrow.
Nastia needs Sprycel (Dasatinib). A monthly course of therapy
requires two packages, with each of them costing 200,000 rubles.
Update as of January 29, 2010.
Dasatinib was ordered for Nastia, but there is no money to pay for it.
She urgently needs to start chemotherapy cycle with Temodal and Dasatinib.
Update as of February 3, 2010.
I would like to express my enormous gratitude to everyone who
has helped with buying medications for my daughter Anastasia.
Our whole family is very thankful to all of you!
On February 2, Nastia's stem cells were collected. The next
round of chemotherapy is scheduled for February 5-6.
Nastia's father
Update as of February 20, 2010.
Nastia is having a very hard chemotherapy course which she
has problems with. We are very thankful to the Metro newspaper
for publishing an article about Nastia, because she and her
mother need financial support to be able to buy drugs and food.
The article can be found
here.
Update as of March 3, 2010.
Nastia is getting swollen and had some seizures. She is being
monitored by the intensive care specialists.
Update as of March 20, 2010.
On March 12 Nastia started 10th cycle of
chemotherapy. She is taking Dasatinib and Temodal (pills).
On February 4th Metro newspaper published an article about my daughter.
Afterwards, we received new donations in our bank account for the total
amount of 32,140 rubles. I would like to express my sincere gratitude to
all the kind and responsive people who are saving my daughter's life. Thank
you very much!
The treatment is going to be lengthy. We need medications, hygienic
supplies, and a special diet during complications after chemotherapy. We
really need your help.
At this time, our family is in a very difficult financial situation.
Nastia's dad has very little work. He is a mechanic, but due to bad weather
he does not receive calls. He is the only income earner. This is why we
need your financial help so much right now.
We are deeply grateful to you. Wishing you great health!
Update as of April 3, 2010.
The last puncture results showed neuroblastoma cells in bone marrow.
Nastia got ascites and is developing hepatomegaly. She is feeling unwell.
