Trouble came to our family all of a sudden. Our son Anton often had colds.
In the spring he had his adenoids removed. It was a difficult decision for
us which it took us a long time to take. But after the surgery the number
of colds did in fact go down.
In the summer our entire family went on a long awaited vacation trip.
In September it was back to everyday life, and we started getting ready
for kindergarten. There was a number of standard medical tests we had to
have done. Anton had his blood taken and... (who could ever believe that?!)
there were cancer cells in his blood. Repeat test confirmed that it was true.
The diagnosis came out of the blue: leukemia!
Anton has been very active and happy all through the summer – he had
been so looking forward to seeing real mountains (it was Kyrgyztan
we went to). He never even got one cold during the summer and we were
so happy about it. No one could ever suspect that such a terrible
thing could happen.
The next day after the blood test was done we already were at the
hematology unit of the Regional Children's Hospital of Nizhnevartovsk
(360 km from the town of Pyt-Yakh). We still refused to believe our
son was sick and kept hoping it was all a mistake. Anton was cheerful
and happy as always. But the bone marrow puncture results stated:
acute lymphoblastic leukemia.
The treatment course began. A 36-days' induction. The doctors were
trying to cheer us up by saying it was a common form of leukemia and
Anton would soon be healthy again and go home. We put up with the fact.
And then came another blow! The results of a cytogenetic analysis
testified to a genetic defect – Philadelphia chromosome. Which means
that Anton needs a bone marrow transplantation. The doctors did not
expect such a turn either. After that Anton was administered a high
dose chemotherapy protocol.
Anton is 4 years old, but he is very strong and patient. No matter how
bad he feels, when asked "How're you?" he always says that
he is fine! Anton is a remarkable child, he is bright and warm like
the sun. He is very kind, sociable, tender, loving, cheerful and caring.
He can never hurt anyone. Anton is very intelligent and extremely
reasonable for his age. He loves logical games, drawing and making
gifts for his mom and dad. Anton is very artistic and sincere. His
dream now is to recover and come back home as soon as possible.
When he grows up he wants to become a priest and have a big house
and farm where he is going to work hard.
When we found out that Anton was to have a bone marrow transplantation
and how much that would cost, our friends, acquaintances and relatives
began to actively look for money. We created a website entitled
"I will live" for Anton where I then kept a diary about
Anton's condition. Our town is very small, and almost everyone was
helping us. We made a partial payment to the Stefan Morsch fund, part
of the money was used to pay for Anton's treatment, airplane tickets
to St. Petersburg and accommodation in St. Petersburg before the BMT.
The Podari Zhizn fund paid the lacking sum. We are so grateful
to them for that!
A donor for Anton was found within three months. We believe that
everything is going to be fine. Anton does not know yet that he is
in for a surgery, that word really scares him. That is why we tell
him that we came to St. Petersburg to recover for good. BMT is scheduled
for May 20, 2010 and is going to take place at the Raisa Gorbacheva
Institute of Children's Hematology and Transplantology.
We are a common family. Anton has an elder brother, his father is a
senior puchasing engineer, and it is his salary alone that our family
lives on now. Please help us pay for accommodation and acquire expensive
drugs which all patients need after the transplantation
(Vfend – 30,000 roubles, Intraglobin – 9,000 roubles per bottle, etc.).
Thank you all for helping our son go back home healthy!
Sergei and Irina Gasnikov
Update as of May 20, 2010.
Anton is at the Children's Hematology and Transplantology Institute,
he is past pre-transplantation chemotherapy and his blood counts have
fallen. Transplantation is scheduled for May 21.
Update as of June 24, 2010.
Anton underwent transplantation on schedule.
He is for now at the clinic, under the doctors' watch. He feels well and is
in a good mood.
Update as of August 18, 2010.
Anton is feeling fine, blood counts are normal, he is now in day hospital.
He began learning English with the help of volunteers and is doing well.
Update as of October 6, 2010.
Anton fells well, there are no signs of GVHD and infection, now he is gradually is taken
off cyclosporine and will have control tests soon. If nothing concerning would be
discovered, Anton would be able to go home.
Update as of October 19, 2010.
Based on results of control tests, remission was confirmed, but minimal residual
disease was discovered (it means that a minimal number of tumor cells is still
present in the body). Donor's lymphocyte infusion and immunotherapy are planned.
Anton's return home will be postponed. He feels well.
Update as of November 23, 2010.
Anton had a biopsy last week, we are waiting for the results to see how
effective the transfusion of donor's lymphocytes and Gleevec was.
Anton feels well. The future treatment depends on the biopsy results.
Update as of February 3, 2011.
Based on the results of last puncture, no minimal residual disease was seen.
Although remission is confirmed, the doctors are not discharging Anton yet.
He is being monitored at R. Gorbacheva Pediatric Hematology & Transplantology
Institute where he receives Gleevec and Ciprinol. He feels well.
Update as of March 28, 2011.
Anton was allowed to go home for two weeks. The boy has now returned
to the clinic for an examination. He feels fine.
Update as of May 20, 2011.
Anton is monitored as an outpatient. He feels great. To prevent a
relapse (six months ago, minimal residual disease was found), Antosha
takes Gleevec and two days ago he had donor's lymphocyte infusion.
Update as of April 20, 2012.
Hello! Based on planned tests that Antosha did in March, he is fortunately
in complete remission and has complete donor's chimerism. Every two months we
undergo an evaluation at R. Gorbacheva Institute of Pediatric Hematology and
Anton does chess at the Children's Arts Center, sings at the
theater choir and attends an educational preschool group, as he is due to start
school this year. Antosha is excited about starting the first grade and looks
forward to it. He enjoys performing at concerts and tournaments.
among other patients of our dear fund, was lucky enough to lead the "Zenit"
football team onto the field before the match! My sincere thank-you goes to the AdVita
team for letting us see and learn so much and experience so many joyful moments!
Thanks to you, we manage to forget why we are in St. Petersburg in the first place…
Our deepest gratitude for your kind hearts, caring attitude and marvelous work!
Irina, Anton's mom
Update as of May 17, 2013.
Late in April, Anton got high temperature, then blood test revealed very
high leukocytes level and the punction showed there was a relapse: 98% blasts
in his bone marrow. High dose anti-relapse chemotherapy according to FLAG
protocol in R. Gorbacheva Institute made this level drop to 23%.
One more therapy block like that is planned, and then there should be bone
marrow transplantation. Most likely, one of Anton's parents will
become his donor.
In addition, the doctors suspect fungal infection, and the boy is receiving Ampholip.
Though his blood counts are very low now, Anton feels OK and enjoys playing
with his friends at the unit. New Anton's photos
Update as of June 11, 2013.
Anton has completed the second course of anti-relapse chemotherapy following
FLAG protocol. He is currently recovering at home. He developed neurological
complications after this course (hand tremor, leg pain) and has been
prescribed Zometa. He may have fungal infection in his lungs and sinuses.
He is currently on Vfend. Next week he is scheduled for puncture and another CT.
Anton is feeling ok. He tries to remain cheerful and spend more
time at home with his toys.
Update as of July 1, 2013.
Fortunately, Anton could achieve remission after the second high-dose
chemotherapy cycle. Unrelated bone marrow transplantation is being
considered, and an inquiry regarding the second stem cell harvesting
from Anton's donor has been sent to S. Morsch International Registry.
Anton is being followed as a day patient and is administered maintenance
chemotherapy with Sprycel in tablet form. Based on the second CT scan,
there are no fungal lesions; however, Anton continues to take Vfend
for preventive purposes. The therapy with Zometa has been effective:
Anton has less pain in his legs than before, but he stumbles over them
while running. Antosha's blood counts are gradually getting back to
normal, though his protein count still remains very low, therefore he
receives IV-drip infusions with Albumin.
Anton feels rather well. He plays and reads books. Yesterday he visited
Vyborg with his parents. Anton loves travelling and dreams of having his
catheter removed so that he can go on longer trips - to London, for
instance, where he has already been.
Update as of July 15, 2013.
Unfortunately, the re-harvesting of stem cells from Antosha's donor is
impossible, and he was recommended to continue maintenance treatment
with Sprycel. Anton is now at home, feeling rather well, and he is in remission.
Update as of August 16, 2013.
Anton continues treatment with Sprycel at day hospital; his blood
counts are normal. Puncture confirmed remission, but cytogenetic
analysis results are not ready yet.
Sometimes Antosha complains of pain in his arms and legs, but
overall he feels rather well. He is lively, positive and is
looking forward to come back to school, so he works on
brushing up the multiplication table.
The boy's stable condition allowed the doctors to let him travel
to Hungary and Montenegro with his parents and brother. The
family has been planning this trip for a whole year.
Update as of September 23, 2013.
Anton is being observed at the Gorbacheva Institute, his blood work
is done twice a week and all indicators are currently normal.
Cytogenetic analysis showed absence of genetic damage. His Sprycel
therapy is ongoing. The Russian Help Fund is providing this treatment.
Antosha is feeling well, he has started second grade, although
unfortunately not at school but at home.
Update as of December 4, 2013.
The puncture confirmed that Anton is in remission, and the minimal residual disease
test was negative. Anton continues taking Sprycel. Antifungal drugs cancellation is
considered, but Anton still takes Vfend for now. From time to time, the boy gets pains
in his legs and is given Zometa.
Currently, Anton has a bacterial infection, but he is already getting better again.
He had to discontinue his studies at school during his illness and he is very upset
by that: the boy is an exemplary student, he finished the half-year with only
excellent grades. And recently, Anton took the first place in
the reading competition at a district festival.
Update as of April 2, 2014.
Unfortunately, Anton had a relapse, but
the chemo worked and the MRI on March, 10 showed no further lesions.
The boy is administered chemo every two weeks and is taking high doses
of Sprycel. He will also need to have radiation therapy to prevent
Anton is feeling better and looks a bit happier. He no longer has
headaches. Yesterday he went back to school after spring break: his
results for the previous term are straight As!
Update as of July 25, 2014.
Anton is still in remission. He is monitored at Gorbacheva Institute.
He is taking Sprycel and goes for
testing every two weeks. He is also getting maintenance chemo and IVIG
on a monthly basis. His next treatment is scheduled for August 11.
Anton is feeling fine, he is as bright-eyed and happy as ever, but is
disappointed that he is stuck in the city for the whole summer.
Update as of August 17, 2015.
Anton remains in remission for leukemia
and CNS leukemia, and he continues maintenance therapy with Sprycel.
Every three months he receives immunoglobulins to support his body's
defense mechanisms. Anton's blood counts are good; the next set of
tests is scheduled for September.
Anton is feeling great; he is an avid reader of Astrid Lindgren and
Mark Twain. This summer Anton traveled to Moscow for the World
Children's Winners Games, where he took second place in chess and
third in soccer as part of the Russian team.
Update as of February 8, 2016.
Unfortunately, Anton was diagnosed
with CNS leukemia in December. His bone marrow aspirations indicate
that he is in remission, however the chromosomal abnormality
(Philadelphia chromosome) has been detected once again.
Up until recently, he was receiving chemotherapy through a lumbar
puncture on a weekly basis. He only receives chemotherapy once a
fortnight now. He also receives a high dose of Sprycel.
He is not feeling very well at moment. He is worried about the pains
in his legs, which are caused by polyneuropathy. He is undergoing
treatment for this.
Anton is able to continue his studies, since his treatment is carried
out in an outpatient setting. He has one to one classes with his
Update as of March 14, 2016.
Anton is continuing the same treatment
regiment as before: elevated doses of Sprycel and a lumbar puncture
with chemotherapy injections once every 2 weeks. Recently he is not
taking the treatments so well due to the toxicity of the drugs. He has
nausea and dizziness.
Anton does not always feel strong enough to study but he tries to
study at least twice a week.
A control puncture is planned for tomorrow - it may help understanding
whether the chromosomal damage has been corrected.
Update as of June 22, 2016.
June's lumbar puncture confirmed
remission; the next series of tests are scheduled for August. Until
then Anton will continue maintenance treatments with Sprycel and
lumbar punctures to prevent CNS leukemia. The boy is feeling alright.
Looks like he'll have to spend the summer in the city; the treatment
plan doesn't contain any substantial breaks.
Update as of February 5, 2018.
Anton continues taking Sprycel. He is
living and studying in St. Petersburg. Anton took an interest in
chess. His family is now re-applying for receipt of medications in
St. Petersburg. This takes time and Anton will not be able to receive
medications from government for a period of time.
Anton currently needs to buy two Sprycel packs for a total of 316,000
rubles. Please help Anton with raising funds.
Update as of March 19, 2018.
Anton is under the care of doctors as a
day patient at Gorbacheva Institute. He continues to take Sprycel
daily, which was again provided by Health Committee.
His blood counts are almost within the normal limits. The remission is
sustained. The scheduled control biopsy will be performed in April or May.
Recently Anton was found to have protein in his urine, his kidney
enzymes went up slightly, and Anton developed some swelling. In
December, he underwent a nephrological examination, which showed that
there was nothing wrong. Currently doctors are monitoring his
condition. Anton does not feel very well. He had just recently
recovered from acute respiratory viral infection, but still has
headaches and fatigue. However, he still attends school and a chess
Update as of April 12, 2018.
Anton is at home. He finally recovered
from acute respiratory viral infection around a week ago. His blood
counts are within normal limits. Kidney enzymes are slightly
increased, but they have stabilized, although at times Anton has
protein in his urine. Anton continues to take Sprycel.
He feels rather well, but gets very tired. He attends school and is
eagerly awaiting summer school break. Next week he is to undergo a
Update as of April 27, 2018.
Anton is undergoing evaluations in St. Petersburg.
He is doing well in regards to his primary diagnosis.
His liver enzymes are elevated, however, which may be due to a
reaction to dasatinib. Anton will consult a nephrologist. In
addition, Anton has a very low immunoglobulin count, but he had a
severe allergic reaction to ImmunoVen. He needs injections of an
alternative immunoglobulin - and the hospital does not have it.
Last week Anton had an accident at a playground and fractured his arm.
He is very upset as it interfered with his summer plans.
Update as of May 21, 2018.
Anton is under care of doctors as a day
patient at Gorbacheva Institute. Puncture is scheduled for July. His
blood counts are within normal ranges. Immunoglobulin is a bit low,
but the required medicine is still not available in the hospital.
Anton is under nephrologist observation. Protein values in his urine
are very unsteady, while kidney values are higher than normal.
Dasatinib dose was reduced to exclude adverse drug reaction. Anton may
be hospitalized for a nephrological examination soon.
Anton feels OK overall, but gets tired quickly. The plaster cast was
removed. Anton continues to play chess and study as a home-schooled
Update as of June 13, 2018.
Anton's medical team allowed him to go
home for a month and remain there under observation of local doctors.
He continues taking low doses of Dasatinib. In July the boy will
travel to St. Petersburg for evaluation. He is feeling rather well and
is currently visiting his grandma in Kaluga together with his mom.
Update as of July 4, 2018.
Anton feels well and takes time to recover
from hospital stays. Recently he returned home from Kaluga. At the
end of July - early August he will have control evaluation. He will
need to continue dasatinib. While at home, Anton reads a lot - he
especially likes fantasy genre - and also plays on computer and goes
Update as of August 16, 2018.
Based on biopsy results from early
August, Anton was discovered to have blasts in CSF. He is in
remission in bone marrow, however. His blood counts are practically
Every week he is receiving intralumbar chemotherapy as a day patient
at Children's Hospital No.1.
He is planned to receive a consultation at Gorbacheva Institute.
Anton feels rather well, reads a lot and has his own YouTube channel
Update as of September 11, 2018.
Anton is receiving chemotherapy
medications via lumbar punctures once a week as a day patient at
Children's hospital No.1. His consultation at Gorbacheva Institute
was postponed. Anton's blood counts are practically normal. He does
not feel very well, however, and experiences fatigue due to treatment.
Anton is not in the best mood right now.
Update as of October 5, 2018.
Anton gets intralumbar injections of
triplets every one to two weeks. His blood tests are holding steady.
The boy will likely be referred for radiation in a little while.
Anton is feeling alright, but the treatments sometimes make him listless.
Update as of October 31, 2018.
Anton was discharged for a month and
his treatment has been temporarily suspended. He remains on Dasatinib.
His blood counts are practically normal. The early October's biopsy
showed that he remains in remission.
Anton is feeling well; he reads a lot, has a YouTube channel about
books, and enjoys playing chess and computer games.
Update as of December 4, 2018.
Since October 29th Anton has been at
home. In mid-December he is planned to have a consultation at
Gorbacheva Institute. Anton feels quite well and recently stayed at
Sheredar rehabilitation camp.
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