Nikita was born on February 24, 1995.
His current diagnosis is 4th stage neuroblastoma with metastases in bone marrow. His disease
was discovered before he turned 4. He was referred to the Hospital #31. The treatment started -
days of fear and pain, months of fight for Nikita's life. During that time my son and I went
through a lot of hardship and the extent of it is impossible to grasp without looking deep
into our souls. He had an operation for removal of tumor in his stomach, and for months my
son was not getting out of bed due to the effects of chemotherapy. He was unable to eat for weeks.
But we stood our ground and won - or so we thought. Unfortunately, a year later we had a
problem again.
Sharp, unbearable pain in Nikita's back forced us to go back to doctors again. A relapse was
diagnosed. A tumor grew in Nikita's head with metastases in the bones. My son became unable
to walk. Because of the terrible pains, Nikita was prescribed strong painkillers.
Chemotherapy was started as well. We prayed to God that Nikita's body responds to the
treatment. And we won again. After the first chemotherapy course metastases and pains had
ceased. Then Nikita had an operation for removal of tumor in his head. Now he is in remission.
However, he also needs to have bone marrow autotransplant done. Unfortunately, we have a
problem with paying for expensive drugs (only Nikita's father is employed).
Nataliya Zagitbaeva (mother)
Update as of January 25, 2002. Upon conclusion of the first bone
marrow transplantation stage, computer tomography (CT) of abdomen and magnetic resonance
tomography (MRT) of brain were performed for diagnostic purposes. Although MRT did not find
any isolated or infiltrated damage, an abdominal CT showed an enlargement of lymph nodes on
the left side of the liver to 1.5 sm. In connection with this finding, bone marrow
transplantation will be delayed until the child goes into remission. It was proposed to
perform radiation therapy on the damaged area.
Update as of Februry 28, 2002. Doctors of the City
Hospital #31 are treating Nikita now. He is doing quite well. After transplantation
Nikita has got chemotherapy and radiation
treatment courses. The other day he has gone through the next examination including Computer
tomografy and contrasting. The result of examination showed that the complete remission was achieved.
Now Nikita has supportive immunosuppressive treatment.
Update as of May 1, 2002. Nikita had a bone marrow punction
that showed normal results. However, for
many months the levels of thrombocytes and hemoglobin have not been rising,
and his body is covered in bruises. After the bone marrow transplantation,
the functioning of the bone marrow has not restored back to normal, which
causes delay of the next transplantation.
Update as of June 25, 2002.
It's been 6 months since the first course of auto-transplantation was performed.
We are very grateful to everyone who was helping us during that time.
For the last 6 months, we hardly ever left the hospital due to low blood indicators,
such as hemoglobin of 38-78 and thrombocytes of 4-69. Once a week, Nikita receives blood and
thrombocyte suspension.
Sometimes Nikita gets high temperatures and takes antibiotics. The days away from the hospital
we spent mostly staying at home due to Nikita's fatigues. During this time, Nikita's dad left us.
I do not work as I have to take care of Nikita. We live on the alimonies and Nikita's disability
pension.
Starting January and up to now, doctors prescribed us to take an anti-fungal therapy
with Diflucan (100 mg a day, 48 packages at 800-1200 rubles each). The doctors are telling us
that after the transplantation Nikita's bone marrow functioning was disrupted.
Today Nikita was tested with Meta-Iodo-Benzyl-Guanidine. Compared to the previous test results,
the tumor has decreased on the left side, near Nikita's liver, by 8%. Next auto-transplantation of
the bone marrow is being moved to a further date again. With the low blood indicators
Nikita has, it is impossible to collect bone marrow at this time.
Update as of July 11, 2002.
On July 5, Nikita was given blood transfusion, but on July 9, his blood
tests already showed lower blood counts (thrombocytes - 8 and hemoglobin -
52), than prior to the transfusion. He is developing resistance to the blood
transfusions. In order to improve Nikita's blood counts, we urgently need
to buy Epoetin Alfa (Epogen, Eprex), which is a cleaner imported analog of
cheaper drug Erythropoietin. It needs to be given to Nikita for no less than
2 months in the dosage of 10 thousand units a week (1 thousand units is $13).
Update as of October 30, 2002.
On October 8, 2002 Nikita had a computer test with Iod-Guanidin.
The cancerous cells clusters of 4 and 2 centimeters in diameter were found in
shin bone and pelvic bone. Currently, the doctors are planning treatment
with palliative chemotherapy (Vepezid and Cyclophosphan).
Simultaneously with the treatment, they are also discussing a possibility of a
second stage of bone marrow transplantation.
Update as of November 28, 2002.
Nikita is staying at the Children's Department of Hospital No. 31, where he
is receiving palliative chemotherapy with Vepesid. He is planned to receive
same chemotherapy cycles every month. The strategy for further treatment has
not been determined yet.
Update as of February 17, 2003.
On December 12, 2002 Nikita had Iodo-Guanidine test. The test showed that Nikita had a diffuse
damage all over his body, from his shoulders to his shins. The bone marrow analysis showed total
damage, as 88% of cells were cancerous. Nikita was sent home for supporting therapy with Segedrin,
but in just 10 days we had to come back to the hospital. Nikita had strong pains in his legs and
he could not walk, and then he became unconscious.
Nikita had very low blood indicators and it was considered too dangerous for him to go through
intensive chemotherapy. Instead, we were offered supporting therapy with Adriablastine or pain
reduction with analgesics. However, I chose chemotherapy in the hope of spending another New
Year with my son, possibly for the last time. The treatment helped Nikita; his pains went away
and he started walking again.
On January 21, 2003 Nikita was tested with Iodo-Guanidine again. The test showed positive dynamic
with a tumor decrease in half. Nikita was released home for therapy with Segedrin. Nikita's condition
stabilized and he was able to take walks on his own.
Unfortunately, we had to face a different problem. My ex-husband, Nikita's father, started trying
to drive us away from his apartment. He has a new family and he needs a separate place to live.
He started letting his friends live in the same apartment and they were having drunk debauches
together. Our life became unbearable and my son was afraid to come home from the hospital.
I was forced to rent a room in a communal apartment for 3000 rubles a month. Through my friends,
I learned about fungal therapy, an alternative method of treatment with funguses and silver water.
A month-long supply of sheitake funguses costs 2550 rubles and silver water costs 1050 rubles.
On February 10, 2003 Nikita's condition drastically worsened. He had unbearable pains in legs,
which could not be relieved by analgesics. Nikita could not walk again. The doctors are giving him
supporting therapy with minimal doses of Cyclophosphan for the next four days.
Ahead of us, we have another stimulus for Nikita to get better. His birthday is on February 24.
He will turn 8 this year. Right now we are in the hospital, and Nikita's analyses show falling
counts of blood components, thrombocytes (6) and hemoglobin (60). Nikita is nauseous and he has
no appetite. Fortunately, pains in his legs are gone. Although Nikita is very weak now, he can
stand, but not walk. I am sure that he will get better.
I would like to ask for a response from those who can help us with a treatment advice and those
who can offer us financial help. I cannot work, as I have to care for my son. Our monthly
income consists of alimony (3500 rubles) and Nikita's disability pension (1090 rubles).
Update as of May 27, 2003.
On May 26th, we were admitted to the hospital to monitor Nikita's blood condition.
During the visual examination, doctor found a bump on top of Nikita's head that was
very sensitive to touch.
Due to this finding, we will have to take MRT test of brain with contrast agent
on May 29th. The test will cost us 4000 rubles and the contrast agent will
cost 2100 rubles.
We would be very grateful for any financial help.
Update as of May 30, 2003.
Thank God! The bump proved to be cyst.
Update as of June 6, 2003.
Nikita began having aches in his arms and he had to start taking painkillers.
On June 5th, we had a telephone consultation with doctor Khokhlov.
He recommended us treatment with amino acids and prescribed us three medicines.
The first round of treatment will cost us 5,000 rubles.
On the day of the Exaltation of the Cross, we went to church.
During Nikita's confession, the priest advised us to visit Homeopathic Center in
Kronshtadt, which we did. One round of treatment there costs 3,500 rubles.
Update as of June 14, 2003.
Nikita had a new bump appear on top of his head. His condition is general had worsened, as
he lost his appetite and his pains returned.
We have received amino acidic medicines from Moscow and started homeopathic
treatment with herbs.
Update as of June 25, 2003.
On June 20th, Nikita had Iodo-Guanidine test. Compared to March, his results were significantly
worse. The test showed shining that was spread throughout Nikita's body. Concentrations in the
heart and liver area, which were previously seen as slight shadows, are clearly visible now.
The current situation is extremely serious. Nikita has strong jumping headaches and backaches
and he is given narcotic painkillers.
We are still hoping that we will overcome this crisis. We are continuing therapy with herbs,
amino acids and silver water. A month's worth supply of amino acids costs 3700 rubles and a
bottle of silver water costs 250 rubles. We would need at least five bottles a month.
We are looking forward to your help.
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