Hello!
My name is Tatiana, I am 21. My husband and I have a daughter Nastia, who is
18 months old. When she was six months old, she was diagnosed with acute
lymphoblastic leukemia.
On the night of January 1, 2009 she was vomiting a lot. Then she could not
sleep well, and was very weak and pale. We called ambulance and Nastia had a
blood test. The local doctors urgently placed her in intensive care unit,
because her hemoglobin count was 45. The next morning, we were transported to
a specialized unit, Hematology department of Regional Clinical hospital. There
Nastia's diagnosis was confirmed.
Our daughter was treated for 8 months. After
she completed the treatment protocol, her doctor explained to us that she is
recommended to undergo bone marrow transplantation. Since Nastia has no siblings,
and no matching donors at the international registry, she will receive autologous
transplant. It will be performed at R. Gorbacheva Pediatric Hematology and
Transplantology Institute under a federal quota. However, we also need funds
for apartment rent and buying expensive medications. We cannot afford all of
this by ourselves, because my husband is the only one who works. I cannot have
a job at this time because I care for our daughter.
Update as of November 27, 2007.
Next week, Nastia will be administered high-dosage chemotherapy prior to
autotransplantation. She feels well.
Nastia's mom
Update as of January 10, 2010.
It has been 20 days since transplantation. Nastia's blood counts
are rising gradually. She feels pretty well:
runs around, plays and eats well.
Update as of January 15, 2010.
Nastia's leukocyte count rose and we were allowed to go home,
to the apartment we rent. On January 15th, Nastia will have a blood
test and she is scheduled for a puncture on the 18th. Based on
the test results, the doctors will determine whether we can go
home or not.
Nastia's mom
Update as of January 26, 2010.
On the 31st day after transplantation, Nastia had a lumbar puncture,
the results of which demonstrated that bone marrow engrafted,
but the blasts percentage is above normal.
The doctors are not considering it a relapse yet, because the
blood content is normal. Nastia was scheduled for another puncture.
If the result is still the same, she will be considered for a second
transplant from one of the parents.
Tatiana, Nastia's mom
Update as of February 9, 2010.
Unfortunately, Nastia had a relapse. She started chemotherapy under FLAG
protocol.
Update as of March 26, 2010.
Nastia finished a course of anti-relapse chemotherapy. She is now recovering.
On March 31 she will undergo haploidentical transplantation from her mother.
Update as of April 3, 2010.
On April 1-2 Nastia's mom’s stem cells were harvested. Nastia does not
feel very well: she was diagnosed with a bacterial infection and was
prescribed Rovamycine for it.
Update as of May 24, 2010.
On 47th day after transplant, Nastia had lumbar puncture and CT scan
of lungs (before transplantation Nastia had pneumonia and she now needs
to have her lungs checked regularly). The puncture showed that Nastia
is in remission (blast content is 1.2%). The CT scan results were also good.
She is now taking immunosuppressive drugs to prevent GVHD.
She feels well.
Nastia gained some weight due to hormones. She still needs Vfend.
Nastia likes to go for walks in the park and to the playground.
Unfortunately, we can let her go there only after 8 PM when the sun
is not so bright. Direct sunlight is contraindicated post-transplant.
They can provoke skin GVHD and appearance of blasts.
In the future, Nastia will be monitored and gradually she will be
taken off immunosuppressive drugs if she does not get GVHD.
The new immune system after cancellation of these drugs is
supposed to suppress residual disease. We now need to hope and
wait that it will happen as planned. It is now a question of time.
Nastia's mom
Update as of June 29, 2010.
On June 8th Nastia started having fever: her temperature was rising
to 39.5C daily. Her treating doctor prescribed an antibiotic, Zinnat,
however, Nastia still had temperature. On June 11th Nastia's central
catheter was taken off. After testing her blood for bacteria, it
turned out Nastia had herpes virus. On June 13th Nastia was hospitalized.
In addition, she got a rash: at first, it was barely noticeable, only on
her cheeks, but with every day it was getting brighter and was spreading
to other areas. The pediatric unit head determined that it is GVHD reaction.
In addition, Nastia's mucous tissues are affected.
She is now at the hospital and receives therapy with antibiotic Meronem,
Solumedrol, Entocort and Advantan ointment to fight skin GVHD.
As Prof. Afanasiev told us after haploidentical transplantation, GVHD
is the best anti-leukemia treatment, but it has to be controlled. So
Nastia is now under the doctors' watch who are trying to manage GVHD.
Nastia's mom
Update as of July 22, 2010.
At 110th day post-transplant, Nastia had a puncture and CT scan of lungs.
Based on puncture results, she is in bone marrow remission. However, CT
scan results are not quite as good. Nastia has a spot in her lungs.
She will undergo bronchoscopy to test these changes and receive proper
and timely treatment. The girl is now an outpatient. Several times a
week she comes to the hospital for checkups and blood tests.
For now, there are no external signs of lung disease: Nastia does not
cough and has no temperature.
Nastia's mom
Update as of August 5, 2010.
Based on bronchoscopy results, Nastia has cytomegalovirus and aspergillosis
infection in lungs. She was prescribed antifungal drugs and antivirals:
Valcyte and Vfend.
Nastia feels relatively well. She coughs a little, but does not
have high temperature.
With hormonal therapy, Nastia became less active or happy. But we hope these
are temporary changes, and the most important thing now is to restrain CMV
and cure aspergillosis.
In a few days Nastia will undergo CT scan of lungs to monitor noted dark spot.
Update as of October 6, 2010.
Nastia still has skin GVHD and had to have a course of photopheresis.
The girl took it well and the skin condition has improved. She is still in
treatment for infection complications. She is in remission, and donor bone
marrow works well.
Update as of October 24, 2010.
Three weeks after the photopheresis course the doctors began to gradually
cancel hormones. The skin condition remains fine. There are still lung problems,
CT on October 21 testified to an infection, so the treatment is continued.
Nastia is taking Sumamed, Tavanic and Vfend and is getting inhalations.
The next CT will most likely be conducted in two weeks.
Update as of November 24, 2010.
The computer tomography of lungs was done on
November 23rd. The fungal lesion was not discovered, there is also no
respiratory infection. Since Nastia was found to have a liver toxicity,
Vfend was replaced with Candidas for some time. Now, due to treatment with
Heptral and Ursofalk, the liver condition has improved significantly. Nastia
had been again prescribed Vfend in 100 mg/day dosage. Doctors decided that
the second session of photopheresis is not needed. Nastia's mother eagerly
waits when Nastia would be taken off hormonal drugs (probably by the end of
December).
Update as of December 24, 2010.
The last biopsy as of December 2nd shows that Nastia is in remission.
She does not need to take Metipred anymore, and since December 11th
she has been put on cortisone replacement therapy. Cyclosporine is
the only immunosuppressant medication that she takes.
On December 22nd Nastia had a consultation with Professor Ludmilla
Zubarovsky and was allowed to go home until the end of January.
In Omsk Nastia is going to be observed by hematologists from Omsk
children clinical hospital. They are going to control cyclosporine
level in blood and her overall condition.
We are very grateful to everyone who helped us during
all this time! Happy New Year!
Nastia's mother
Update as of February 28, 2011.
Nastia came to St. Petersburg for planned examination.
She has mild skin GVHD.
Update as of March 17, 2011.
Nastia underwent planned tests. She is in remission in regards to
primary diagnosis. She has slight skin GVHD so she continues
immunosuppressive therapy. The doctors allowed Nastia to go home.
The next examination will take place in two months.
Update as of May 20, 2011.
Nastia arrived for control tests. Her blood counts are normal and
complete remission was confirmed. She has slight skin GVHD symptoms.
Update as of July 7, 2011.
Nastia completed planned tests. Based on results, she is in
complete remission. Her blood counts are good and transplant works well.
To treat her chronic skin GVHD, she was switched to Cellcept from Cyclosporine.
The next evaluation is scheduled in three months.
Update as of January 12, 2012.
Based on planned tests, Nastia's minimal residual disease indicators have
increased. She was prescribed purinethol and methotrexate. In addition, donor's
lymphocyte infusion is planned to prevent a relapse. Nastia is now undergoing
consultations in regards to fingers' contracture (hand deformity) and surgery
is being considered.
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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