My daughter Sveta got sick in September 2007. A fun-loving and active girl,
with lots of friends, a good girl who always did well at school and loved
painting and knitting, Sveta suddenly became weak, feeling tired and getting
sick more and more often. She often had a fever, she lost her appetite and became
pale. In October 2007 she went to a doctor and had a blood count done.
She was diagnosed with leukemia. We lived in the Astrakhan Region at that time
and were referred to the oncohematology unit of the Asktrakhan Children's Clinical
Hospital. In November 2007 we were admitted to hospital where Sveta was examined
and diagnosed with aplastic anemia.
I could write a novel about the way Sveta was treated there. She nearly died
in that hospital and only survived thanks to my efforts. The next day after
we had been discharged from that hospital Sveta was admitted to the oncohematology
unit of the Ryazan Regional Children's Clinical Hospital.
Another week later her doctor told me that Sveta's aplastic anemia was very
grave and required a different treatment protocol. That meant that the treatment
Sveta had been getting was harming her. Due to the hormones she had to take
Sveta got osteoporosis, compromised liver and kidney function and fungi in her
lungs.
We had been getting treatment at the Ryazan Regional Children's Clinical Hospital
from June 31, 2008 till August 1, 2009. Sveta was discharged upon my request
with a grave form of aplastic anemia as her diagnosis since we already had an
agreement with the Raisa Gorbacheva hospital where we were to have an examination.
After that examination Sveta was diagnosed with grade II myelodysplastic syndrome.
A number of consultations with the leading doctors of the clinic followed, one
of them being with Professor B.V. Afanasiev. The doctors' decision was to admit
my daughter to hospital where she would be administered treatment and prepared
for a bone marrow transplantation.
By now Sveta has been staying in hospital for a month. Her treatment is financed
by the government. By there are also expenses that the government does not
cover such as expensive drugs and equipment for a haploidentical transplantation.
Sveta has no donors among her relatives or in the International registry. If
compatible stem cells are not found in the Russian cord blood banks she'll need
a transplantation from her mother, which means the donor will only be 50% compatible.
If the transplant is not cleansed in a special way the "graft versus host"
reaction will be too strong. One cleansing device costs some 300,000 roubles,
and Sveta needs two of them.
I do not have such money. I am a single mother and have no one who'd be able
to help. That is why I am asking all good people to help us. Please help me save
my Sveta!
Update as of October 26, 2009.
Svetlana is undergoing chemotherapy as outpatient, and the doctors are
preparing her for bone marrow transplantation. Unfortunately, the
examination discovered aspergillosis, and she now needs to take Vfend at
400 mg a day. A package that costs 25,000 rubles lasts her a week.
Update as of November 27, 2009.
Svetlana is now undergoing the 4th round of chemotherapy. She constantly
needs transfusions of blood and components, as she practically never exits
cytopenia. Sveta regularly receives therapy with antifungals and immunoglobulin.
Depending on the results of current treatment, a decision will be made whether
another round of chemotherapy will be offered, and in the future - whether
Sveta will need bone marrow transplant.
Sveta's mom
Update as of December 8, 2009.
A decision was made to perform haploidentical bone marrow transplantation to
Svetlana from her mom. She will need specialized equipment (columns for cleaning
of donor's transplant) that cost 600,000 rubles. We are waiting for the doctors'
conclusion and invoice for the columns. Transplantation needs to be performed
as soon as possible, ideally – at the end of December. We have very little
time to raise money.
Update as of December 29, 2009.
The equipment for haploidentical transplantation was paid for by
"Romashka" charity. Transplantation took place on December 23.
Svetlana is now in cytopenia and has fever.
Update as of January 21, 2010.
Unfortunately, donor's bone marrow did not engraft, so the doctors are
considering second transplantation from Sveta's father. She needs one
two columns for cleaning of the donor's transplant
(bill).
The total price is 547680 rubles.
Since Sveta is allergic to Biseptol, she needs Pentamidine,
a hard-to-find medication that is not exported to Russia
at this time.
Update as of January 29, 2010.
Sveta is in deep cytopenia and has fever. On Wednesday she will have a
consultation with Professor Klimko from Mycology Institute.
Based on the results of the consultation, she will be prescribed therapy.
She now receives Cancidas and Posaconazole.
Update as of February 3, 2010.
Upon a consultation with Professor Klimko Sveta was prescribed
Ampholip to overcome the fungal infection. The girl is now in
intensive care on ALV with low leukocyte counts and a serious
mycotic lesion. Sveta needs donor blood of group A Rh+.
