Hello!
My son Timur Avanesov is an x-ray technician from Tashkent. He was exposed
to high radiation levels during his work in May last year. As a result, in
January 2008 he developed acute leukemia. His bone ached, but for two weeks
the doctors could not diagnose him, until my son as a doctor diagnosed
himself. Timur suspected leukemia from the beginning, but did not really want
to believe such a diagnosis. However, he made a courageous decision and went
to Hematology Center in Tashkent, where he asked for a diagnostic puncture.
The diagnosis he established for himself was confirmed exactly, and so the
nightmare that was to last for two years has began.
For nine months now he has been receiving treatment. The first three months,
he was treated in Tashkent and we used our family savings to pay for it. Due
to complications of the leukemia type (Ph+) he was referred to Moscow for
consolidated treatment that cost $35,000.
We had to sell our Tashkent apartment to continue treatment in Moscow.
However, apartments are much cheaper in Tashkent than in Russia. We were only
able to cover a half of the amount we needed, and that did not include the
living expenses and food for me and Timur's younger brother.
The rest of the amount we were able to raise with the help of the charitable
fund. We are very grateful to them!
The further treatment, according to our doctors, requires bone marrow
transplantation. This procedure costs upwards of $50,000 and can be performed
at State Medical University in St. Petersburg.
However, if a donor for Timur is not found, he will have to undergo
chemotherapy for almost 2 more years, which would also cost us close to
1,000,000 rubles. For our family of me, a pediatrician, my son, a doctor, and
his younger brother this amount is beyond our reach. We already sold anything
we could, but even that was not enough.
I am sincerely asking everyone who has an opportunity and a heart and soul to
help give my son his life! Thank you in advance.
Update as of July 23, 2008
On July 18th, an anonymous donor transferred 150,000 rubles for Timur's
treatment. This money will cover two weeks of treatment. Thank you very
much!
Nevertheless, Timur urgently needs to pay off his debt for the port
installation (30,000 rubles).
Sasha Schetkina
Update as of July 31, 2008
The Max Fund paid for 2-week therapy with Heptral and Phosphogliv
medications for Timur, for the total cost of $600. Timur is now looking
for the funds to buy specialized Huber needles for ARROW port. He
continues chemotherapy.
Sasha Schetkina
Update as of September 1, 2008
Timur does not feel very well. The treatment is very difficult and he is
out of money to pay for it. Timur needs 200,000-300,000 rubles; otherwise,
he will be discharged. In addition, he needs to undergo urgent Hepatitis
C treatment which activated due to his main illness. Timur was prescribed
Interferon and Ribavirin. Please help!
Sasha Schetkina
Update as of September 17, 2008
Timur looks relatively well. Better than the last time, when he could
barely walk. He needs to undergo a short chemotherapy course. He, of
course, needs to be tested thoroughly, which is very expensive. A donor
has not been found yet, nut the search is continuing.
Timur with his mother and brother moved out of their previous apartment.
They now rent a place close to the hospital. Timur needs 300,000 rubles
for the short chemotherapy courses.
We would like to ask everyone to respond and help Timur! He is halfway
on his road to recovery.
Sasha Schetkina
Update as of September October 2, 2008
Currently, my son is receiving treatment with short chemotherapy courses
(COMP protocol), each of which will cost 30,000 – 40,000 rubles at Blokhin
Center (including medications).
The following medications are needed for the short courses:
1. Medrol – considering 50 pills for a course and total of 24 courses,
24 packages of the medication needed.
2. Methotrexate - 50 mg for a course and total of 12 courses. Total
need - 600 mg (in bottles).
3. Vesanoid (ÀÒRA) - 2 bottles with 100 pills each for the whole course
of 2 years.
4. Interferon (Interferon Alpha A, Hoffman-La Roche, 3 mil units due to
hepatitis C. Interferon is also included in the treatment protocol for
this type of ALL – 3 mil units 3 times a week, for at least six months.
Total – 75 bottles at 3 mil units.
5. Cytosar – 1,250 mg in bottles for a course, total of 12 course, which
adds up to 15,000 mg.
6. Phosphogliv in bottles (medication to support liver function, as Timur's
enzymes now reach 280 during hormonal therapy), 2 boxes for a course,
total of 24 course, which adds up to 48 boxes.
7. Insulin Glargine Lantus (long-acting, once a day insulin) – only
during hormonal therapy, as it causes sugar levels to rise, 2 boxes
with 5 bottles each.
8. Cyclophosphane – 2,800 mg a course, total of 24 course, which amounts
to 340 bottles at 200 mg.
9. Vincristine - 4 mg a course, total of 12 courses, which totals to 48 mg.
10. 6-mercaptopurine in pills for daily intake for 2 years.
11. Methotrexate in pills for daily intake for 2 years.
The BMT clinic head, professor Zubarovskaya replied today to our letter
and told us that the search for the potential bone marrow donor at the
international registry is continuing and she will notify us separately
regarding transplantation date if it becomes a possibility.
Timur's mom
Update as of November 24, 2008
Timur is now at the hospital. Nothing new has been happening, just a hospital
routine and doctors' daily work. Timur's condition is worrisome: he has low
thrombocyte count and very low leukocyte count. Timur received transfusion of
thrombocyte mass and had therapy with Neupogen and Leukostim,
so we are waiting for the results of it.
Timur's treatment at the hospital became possible thanks to financial support
from Sasha Schetkina. She is a very kind and luminous person, we are always
happy to see her. We would also like to express our enormous gratitude to Pavel
Antoshkin for his care and compassion towards others, and Lena Gracheva for
her competent and wise advice, which she is ready to provide at any time
of day or night. Timur is sending his hi to everyone and wishes everybody
good health and lots of strength.
Timur's mom
Update as of January 13, 2009
Our life has been very intense lately. Every day was different, because
Timur was not in a stable condition. His blood counts were plummeting
for reasons unknown, which often leads to lowered immunity and any
infection can become lethal. For three weeks, Timur's temperature
stubbornly rose despite therapy with the latest antibiotics, as
well as antifungal drugs, which unfortunately led to a complication on
Timur's kidneys and caused acute renal failure. The therapy had to be
canceled and renal function had to be recovered using intensive care
methods.
All of this was accompanied by very low blood counts. Timur
received transfusions of thrombocyte concentrate and other blood components.
The hospital charged us 120,000 rubles for the last chemotherapy course,
even though all the most expensive drugs that were urgently needed by Timur
were purchased by AdVita fund and immediately delivered to him. At that
time, we managed to stabilize Timur's condition and he felt well during the
New Year holidays, but then his blood counts started plummeting and he
developed fever again.
At the beginning of January we received news from
Israel that transplantologists from Hadassah clinic in Jerusalem
had found matching cord blood for Timur's transplantation. They can obtain it
if he performs transplantation in his clinic. Igor Borisovich feels that
even though Timur's case is complicated by hepatitis C with high enzymes,
Ph+ leukemia type and many chemotherapy courses there is a hope for a good
result, as he is very experienced in performing thousands of
transplantations. This gave me hope.
We received a bill for the upcoming
transplantation for 100,000 euros, not including living expenses and lodging
for the period of outpatient monitoring, or tickets. Unfortunately, this is
the only option for transplantation for Timur, as he did not match to a
donor at the international registry, and the cord blood from the American
banks is not available for Russian clinics. We are asking for help with
raising this enormous amount of money. Unfortunately, we have no other
option.
Respectfully, Irina Germanovna Avanesova, Timur's mom
Update as of March 30, 2009.
We are sincerely grateful to Captain Nemo for paying the bill
for transplantation and to web community Chinese Pilot Society
for raising funds for cell therapy that Timur will need after
transplantation. Timur is now undergoing a planned course
of supporting chemotherapy.
Update as of April 9, 2009.
Timur is recovering after another chemotherapy cycle. He is now
waiting for the Uzbekistan embassy to issue visas so that he and his
family can travel to Israel and start preparing for transplantation.
Pasha, AdVita fund volunteer in Moscow
Update as of May 25, 2009.
Timur successfully arrived to Israel. On Sunday he will be admitted to
the clinic for examination.
Update as of May 25, 2009.
Timur and his family are already in Israel. Tomorrow he will undergo
all the required testing. Timur is starting to prepare for the BMT.
"The donor can be activated at any moment", - said Timur's
mother. Today Tima and his family will move into the apartment where
they will live. Timur asked me to say hi to everyone.
He is in high spirits and set to win.
Sasha Schetkina
Update as of June 4, 2009.
Timur is preparing for bone marrow transplantation, goes for
tests and prepares himself for the operation emotionally. Today, based
on his request, we purchased inexpensive medications in Moscow that
cannot be bought in Israel without a prescription. With this supply,
Timur will feel more confident.
A journalist Olga Pinsker took very active part in buying the medication.
Thanks to her help, hundreds and thousands of people learned about Timur
in the last few months. Thank you, Olya!
Pasha, AdVita fund's volunteer in Moscow
Update as of August 8, 2009.
Timur started pre-transplantation chemotherapy.
Update as of September 1, 2009.
Unfortunately, cord blood transplantation was canceled, as necessary cell
quantity did not develop. Pre-transplantation conditioning is interrupted.
Haploidentical transplantation is now under discussion.
Update as of September 12, 2009.
Timur tolerated transplantation normally, as most patients, but then
developed complications once the cells started engrafting. Today his
temperature reached 39C and he suffers from severe mucositis. Today his
treating doctor, Igor Borisovich Reznik, prescribed post-transplantation
therapy, so Timur should start feeling better.
Irina Germanovna, Timur's mother
Update as of November 6, 2009.
I apologize for not writing more often, but the situation is about the
same, and as soon as something good happens, something bad happens
right away too.
CMV virus that was the main complication was overcome, and blood counts
rose right away, but in three days the virus returned. The anti-viral
medication, Foscarnet, is very harsh. It causes imbalance in electrolytes
and affects kidney function. Timur is on IV drip for days at a time.
CMV virus also affects gastrointestinal function.
Timur lost 6 kg and has had high temperature for two months already.
This is our unhappy news.
But the bone marrow is working! I know that everything will be well.
But I guess we need to wait some more.
I am feeling so sorry for Timur, but I have to control myself. I cannot
get irritated and cannot cry. And sometimes I feel so much despair!
Thank you very much for being with us! I would have been impossible to
deal with this on our own. I am torn between the hospital and our house
where my younger son cooks for himself and does his homework. As soon
as Timur is stable, all the negative events of the last 60 days will
pass, and we will all be together.
Irina Germanovna, Timur's mother
