Hello!
I am Kirill's mom.
Our son was born on September 14, 2002 in St. Petersburg.
We always cared for his health and Kirill was growing up a kind, happy and mischievous boy.
It so happened that a year ago my husband and I got divorced. My son lives now with me.
Although my ex-husband has a new family now, he enjoyed playing with Kiryusha and taking
him out, until the disaster struck…
At the end of March Kirill started limping on his right foot. When I asked what happened,
he said that his leg hurts, but he did not hit it anywhere.
We went to a trauma clinic, where the examination did not uncover anything abnormal.
The doctor said that it was most likely a result of an injury and advised to apply
warm compresses. After a couple of days, my son started to limp on the left foot too.
I urgently took him to a district clinic, where the surgeon refused to diagnose him and
referred Kirill to a hospital. On April 3, 2008 we were admitted to a Children's clinic No.2
with suspected arthritis of hip joints, where the doctors immediately started to investigate
the reason for it. Unfortunately, the reason was very distressing, as the examination showed
a tumor in Kirill's abdomen.
On April 16, 2008 Kirill was transferred to the pediatric oncology and hematology unit
of City hospital No.31, where he had all kinds of tests and examinations. The same day he
had a biopsy of the left supraclavicular lymph node. The final diagnosis was stage IV
neuroblastoma with damage to right adrenal gland and metastases in bones, bone marrow and
remote lymph nodes all over Kirill's body.
Kirill had already completed the first course of induction chemotherapy under NB-2004
protocol. On May 13th he will start the second course.
I stay constantly at the hospital by Kirill's side and unable to work at this time.
Kirill's father is helping us with everything possible, but it is not enough.
I will be very grateful to everyone who takes an opportunity to provide us with support.
Update as of May 22, 2008.
Kirill completed the second chemotherapy course yesterday. He is in a good condition
and his temperature is normal. However, he has no appetite and his blood counts dropped.
The ten blood donors whose help Kirill needed were already found and had donated
their blood.
Kirill's father
Update as of June 6, 2008.
Kirill feels OK. As soon as his blood tests are back to normal, he will start the third
chemotherapy block. He has normal temperature and good appetite.
Update as of July 22, 2008.
The test results show that the tumor does not react to chemotherapy.
Based on that, in accordance with treatment protocol, an operation was
planned to remove all the tumors after the 4th chemotherapy block.
Unfortunately, Kirill's general condition and bad test results prevented
the operation from happening. A decision was made to perform the operation
after the fifth block, which started on Sunday.
In general, Kirill's feeling OK. His eye bags, temperature and a lack of
appetite are by now a norm for him.
More importantly, he is in a good mood! Kirill's photos Here
are a couple more pictures.
Kirill's father
Update as of July 28, 2008.
Kirill underwent planned chemotherapy course and is preparing for the
surgery to remove a tumor.
Update as of August 13, 2008.
Unfortunately, the operation was postponed again, as Kirill has low leukocyte
count. If it doesn't increase in the next few days, Kirill will start the sixth
chemotherapy course.
Update as of August 14, 2008.
Kirill started the sixth block.
Update as of August 21, 2008.
Kirill is undergoing the sixth chemotherapy course. He has a good appetite and
is in a jolly mood. He plays with Mark Gritsik and
Sasha Zhukov.
Update as of September 26, 2008.
Kirill was allowed to celebrate his birthday at home! Afterwards, he returned
to the hospital right away.
Last week, Kirill's implanted port was removed due to fungal infection. And
yesterday, Kirill was operated.
The operation lasted 5.5 hours, with complications and profuse bleeding.
However, everything turned out "probably successful" in assistant
surgeon's words.
Kirill's adrenal gland and damaged lymph nodes were removed. Some of his liver
was also taken out.
He is now sleeping at the intensive care unit. Kirill has lots of tubes and
wires, drainage and an oxygen mask on him, but he already looks a little pink!
We were told that the first 2-3 days will be very difficult, and for the next
ten days Kirill will not be allowed to get up.
Kirill's dad
Update as of October 31, 2008.
Based on the results of the control puncture, Kirill has no cancerous cells
in his bone marrow. Kirill will undergo bone marrow autotransplantation.
Update as of November 16, 2008.
Kirill underwent myeloexfusion (cell harvesting for bone marrow
autotransplantation). The transplantation is planned to take place in a week.
Update as of November 27, 2008.
Kirill is undergoing the 7th chemotherapy cycle. Afterwards, he will begin
the bone marrow autotransplantation procedure. Kirill is not tolerating
chemotherapy well due to nausea and cytopenia, but he keeps a brave face.
We are now looking for at least 40 blood donors, as Kirill will need many
blood transfusions.
Kirill's father
Update as of December 8, 2008.
The autotransplantation took place on December 1st, as scheduled. Kirill
is now in cytopenia.
Update as of December 19, 2008.
We found the required number of blood donors, thank you very much!
The third post-autotransplantation week is coming to an end. Kirill feels unwell.
His leukocyte count is only 0.1. His blood formation has not started yet, which
means treansplantation has not been effective yet. Kirill's temperature has
been staying at 39C for several days and he does not eat anything.
The doctors are suspecting viral pneumonia and there is also a risk of tuberculosis.
Kirill's permanent catheter was removed, as the infection most likely traveled
throuh it, and a new one was installed under the general anesthesia.
Kirill receive antibiotics and antifungal drugs around the clock.
Kirill's father
Update as of December 24, 2008.
It's the 22nd day after the bone marrow transplantation. Kirill is feeling
well, he plays with his ninja turtles and misses his friends Mark Gritsik
and Kirill Belyaev. He can't wait till his white blood cell count goes
up (it is now 0.5) and he can go back to Unit and see his friends again.
Every day he tries to guess what his tests will show. He wants to celebrate
New Year's at home and looks forward to Father Frost's gifts. In his letter
to him he asked for a transformer and a real parking garage. We're counting
the days. Will we manage to get home, will we manage to recover in time?
Kirill's mother
Update as of January 8, 2009.
Starting January 11th Kirill will need Roaccutane therapy. The two-week
course requires 5 packages and costs 7,000 rubles.
Kirill's control MRI is in two weeks, it is estimated to cost 4,000 rubles.
Update as of January 15, 2009.
On Monday, after two months at the hospital, Kirill was discharged home.
He feels well and has a good appetite. We are now waiting for discharge
instructions and discussion of further treatment. For now, Kirill was
prescribed Roaccutane.
Update as of March 10, 2009.
Kirill feels well. His appetite is not very good as usual, and he gets
cranky over anything. But his hair started to grow back!
He takes pills he was prescribed daily (Roaccutane, Magne B6, folic
acid and Biseptol).
Kirill's father
Update as of May 15, 2009.
Kirill is continuing therapy with Roaccutane that
was prescribed to him.
The latest tomography results show that his internal organs and
affected lymph nodes have not changed.
Kirill's hair has grown back, but his appetite did not return.
We still have to make him eat so that he gains weight little
by little.
Kirill's leukocyte counts are low, but not critically so.
We were told that after bone marrow autotransplantation they
could stay this way for a very long time.
Kirill runs around, plays and simply enjoys living. After so
many months at the hospital, however, he learned to run very
carefully. He loves soccer, playing with construction toys
and computer games.
Kirill's father
Update as of July 28, 2009.
Since July 1, Kirill has been at Solnechnoe sanatorium where
he was referred by the hospital to rest from the life in the
city for the whole month! Even from the sanatorium, however,
we have to go to the hospital for tests. The last time,
results were not very good, but we are trying to stay calm,
since we will go for re-testing soon (it is possible that
results were incorrect). And then we will see…
Due to his weak immunity, Kirill picks up all kinds of infections,
which we have to treat constantly.
Kiryusha feels well and he does not complain about anything.
He plays with his friends, goes to the woods for walks and
plays at the game room.
He is only upset that he did not swim once yet. It's either bad
weather, or he is sick.
He still takes Roaccutane and it is not clear how much longer
the therapy will last.
Since in this crisis time it is very hard to earn money, I can't
figure out where to find money to buy it.
If someone has an opportunity to help us with Roaccutane (20 mg),
I will be very grateful!
Kirill's father
Update as of September 1, 2009.
Based on planned testing results, Kirill had a relapse. The consultations
with Western clinics are now underway regarding further treatment.
Update as of September 18, 2009.
Unfortunately, Kirlll had a complete relapse. The tumor again spread
to the remaining pancreas, lymph nodes and bone marrow.
As we were told at the clinic, further treatment will not be effective.
They advised only palliative therapy.
Rambam clinic in Haifa, Israel expressed willingness to try to treat
Kirill. However, they estimate treatment to cost $60,000 - just for
the first stage. Here is the quote from the clinic's response: "Only after
the first stage of treatment we will be able to repeat all the tests
and evaluate the response. If there are positive changes, we will continue
treatment, and if not - treatment will be corrected. If remission is achieved,
second transplantation could be offered."
We are currently raising $60,000 for Kirill's treatment.
Kirill's father
Update as of October 15, 2009.
The last month we have written to many clinics around the world.
Unfortunately, many clinics refused us saying that "we are
very sorry, but there is nothing we can do". Some of them
(unfortunately, including Rambam clinic) offered only standard
treatment protocols that will not be effective in Kirill's case.
As a result, we started searching for the clinics that specialize
in neuroblastoma and can offer different treatment options.
We found them in the United States.
Several clinics are willing to treat Kirill with experimental
medications. None of them can give us any guarantees, but we
have no other chances.
Today we received a cost estimate
from MD Anderson hospital in Houston for $89,273.
This is a rather "humane" amount,
compared to other estimates ($500,000 from Texas Children's hospital).
The medications will be provided to Kirill for free, as the study
is sponsored by a drug manufacturer. The estimate includes personnel
cost and cost of tests and examinations.
So now we need only to raise this amount and transfer it to
the clinic's account. After the money is received, the hospital
will issue invitation for Kirill and his parents.
As soon as we get the invitation, we will be able to apply for
a visa and fly with Kirill to Houston.
We will be very grateful for your help!
Kirill's father
Update as of November 16, 2009.
As of now, we raised close to $35,000. We need $55,000 more.
Kiryusha is starting to feel worse. His sides, back, chest and
legs started to hurt. Because of these pains, he cannot sleep well.
For the last week, he kept running fever of 39C.
Kirill's father
Update as of November 30, 2009.
Thanks to help of Happy World fund, the rest of the amount necessary
for Kirill's treatment in a clinic in the US has been raised. If all
goes well, Kirill will be able to fly for treatment this week.
Update as of December 6, 2009.
Kirill was met at the airport by Advita Fund USA volunteers
and taken to Ronald McDonald house.
During their flight change in Frankfurt, Kirill's legs were
aching, but he looked better in Houston and was very interested
in toys at RMD house.
On Monday he will start tests and will meet his doctor.
Update as of December 7, 2009.
Today Kirill and his parents met with the doctor.
Kirill is in a relatively good shape despite the
pains and temperature. He already had a blood test
that showed low hemoglobin, so Kirill will need a
blood transfusion.
The rest of the tests will be finished this week
and on Wednesday the doctor will determine whether
Kirill qualifies for the clinical trial that he came for.
In case he does not, the doctor assured us that there
are many other treatment options available to Kirill.
Marina, president of Advita Fund USA
Update as of December 9, 2009.
Kirill was accepted for the clinical trial, and he will
start treatment on Monday. After two blood transfusions,
Kirill is much more active and his skin color turned
a little pinkish.
Marina, president of Advita Fund USA
Update as of December 16, 2009.
Kirill started treatment on Monday. He is taking a pill of Zactima a day,
and after 8 weeks will have complete examination. Since yesterday
he had higher temperature, so the doctor prescribed
him Dexamethasone as well.
Marina, president of Advita Fund USA
Update as of December 24, 2009.
Unfortunately there's no response to the drug administered.
The doctors are considering the protocol change.
Update as of December 29, 2009.
Today Kirill met with his doctor and new treatment
strategy was proposed, since Kirill did not respond to
the experimental drug.
He also received hemoglobin transfusion and
will receive platelet transfusion in a day or two (due to shortage of
blood during holidays).
One of Kirill's eyes is bulging out considerably.
We are hoping Kirill will respond well to the new
therapy.
If not, there will still be options, including most likely
experimental drugs.
Marina, Advita Fund USA
Update as of January 5, 2010.
Tomorrow Kirill will also undergo radiation therapy.
It is required urgently. Kirill is receiving blood
transfusions practically daily.
Marina, Advita Fund USA
Update as of January 13, 2010.
Kirill is finally looking better. He is more active, talks,
jokes and plays videogames. The last few days he did not need
painkillers and today he did not need a blood transfusion.
All this indicates that he is probably responding to
chemotherapy. Kirill is scheduled to start another cycle
of chemotherapy at the beginning of February. It will be
followed by tests to evaluate effect of therapy.
If Kirill responds well, he will undergo at least 2 more
courses, and is response is not as good as expected, he
will be switched to a different protocol.
Although Kirill's doctor does not expect that current
chemotherapy will lead to cure, he is planning to enroll
Kirill into another clinical trial for neuroblastoma once
the tumor is under control.
There are currently many trials with very promising results,
for which Kirill may qualify once his blood counts improve.
Marina, Advita Fund USA
Update as of January 25, 2010.
During the weekend, Kirill's condition worsened. He got
pains in his arms, legs, and abdomen. He cannot walk and even
turning causes pain. Tomorrow he will start the second
cycle of chemotherapy - earlier than originally planned.
Marina, Advita Fund USA
Update as of February 5, 2010.
Today Kirill had CT scan of abdomen and next Tuesday he will
go for CT scan of his head. Next Wednesday, during the doctor's
visit further treatment options will be discussed.
It is possible that Kirill will be offered more intensive
chemotherapy.
Kirill receives periodic blood transfusions, but his eyes
look a little better.
Marina, Advita Fund USA
Update as of February 18, 2010.
Tomorrow we expect to receive a cost estimate from MD Anderson
Orlando hospital where Kirill is eligible to participate in
a new clinical trial. It is likely not going to be the last
trial, as MIBG therapy may also be an option in the future.
This week Kirill started a new chemotherapy regimen and he
is feeling nauseous. But overall, he is active, seems to look
better and continues playing videogames.
Marina, Advita Fund USA
Update as of March 6, 2010.
Kirill's parents have decided to take Kirill for a clinical
trial with an experimental drug at MD Anderson clinic in Orlando,
Florida, based on recommendation of Kirill's treating doctor.
This trial is not open in Houston, and Kirill's doctor believes
it is the best option for Kirill at this time. The cost of
the trial is estimated at $81,000.
If a deposit is transferred
early next week, Kirill will be able to be examined on Friday
and start treatment on March 22.
Marina, Advita Fund USA
Update as of March 23, 2010.
On Thursday, March 11th, Kirill and his parents flew to Orlando,
Florida, for participation in a different clinical
trial for neuroblastoma in MD Anderson Cancer Center Orlando.
The following week he had a number of tests, including MIBG
and CT scans, and on Monday, March 22nd, he started chemotherapy
with an experimental drug and a medication for osteoporosis.
The trial will run for at least 3 cycles, and if Kirill
responds well, he may have to stay in Orlando for a long time.
Last week Kirlll had high temperature, but, fortunately, no pain.
Marina, Advita Fund USA
Update as of April 6, 2010.
Kirill is still feeling nauseous despite taking several anti-nausea
medicaitons. He is not eating well and lost some weight.
His eye is getting better, however, and soft tissue around
the eye is looking more normal.
Marina, Advita Fund USA
Update as of April 21, 2010.
During this and next week Kirill will be undergoing tests to
evaluate his response to the therapy. He still has issues with nausea,
but the last drug he tried seems to work better.
Kirill will get free passes to three of the parks in Orlando area,
including Disneyworld. We are hoping that he will feel well
enough to enjoy his visit.
Marina, Advita Fund USA
Update as of May 3, 2010.
Based on test results, Kirill's disease is stable.
However, due to low leukocyte count, he will not be able
to start chemotherapy this week. He receives neupogen
injections to stimulate leukocyte growth and was also
installed a feeding tube due to constant vomiting and weight loss.
Kirill's treating doctor offered to sign him up for another
Phase I clinical trial in the hope of getting a better response.
There was only one spot left in the trial, and if Kirill is
eligible, he could start therapy next Monday.
Marina, Advita Fund USA
Update as of June 9, 2010.
Kirill finished radiation therapy on his abdomen and next week
will start more targeted radiation. Last week he also had another
cycle of chemotherapy, but unfortunately, it is now less
effective than it was in the beginning of the trial, so
Kirill is planned to be switched on a different combination.
Kirill's knees ache and he cannot walk. He is on constant pain control
medications.
Kirill is visited by his family friends and he is very
happy to have a chance to play with a 6-year-old Yulia.
Tomorrow he is planned to go for a drive in a Ford Mustang,
which is a dream he had for a long time. Members of the local
Mustang club organized this event specifically for Kirill.
Marina, Advita Fund USA
Update as of June 23, 2010.
Kirill was transferred to a different chemotherapy combination, because
the test results confirmed that the tumor stopped responding to the
previous protocol. Today Kirill started therapy with Vinorelbine
and Sirolimus.
He is continuing radiation therapy as well, and may
receive radiation on his leg, where he has a lot of pain. His doses of
painkillers were increased.
However, Kirill is in good spirits. He was happy to see his little
friend Yulia who came to visit him from Russia and promised
her to get well soon.
Marina, Advita Fund USA
Update as of July 22, 2010.
Kirill did not respond to the latest chemotherapy protocol and he was
taken off Vinblastine to prevent plummeting of blood counts.
Unfortunately, it is unlikely that Kirill's tumor will respond to any
ther therapy, as it has been resistant to all previous protocols.
It is growing aggressively. Kirill lives with his parents at Ronald
McDonald's House but he goes to the hospital for various
procedures every day.
Marina, Advita Fund USA
