My name is Elena Efimova. I am a mom of a 3-year old boy and I need help.
My son has been seriously sick for a long time. We spent the whole last year in
the hospital, as my son German constantly requires blood transfusions.
His further treatment, and even life, depend only on undergoing bone marrow
transplantation, for which he needs a donor. German is our only child and he has
no related donor. We need to search for an unrelated donor at the international
registry. The donor search, his/her activation and delivery of transplant
to St. Petersburg cost 17,500 euros.
I am an elementary school teacher, and for the last year I has been on a sick
leave. For this reason, I am asking for your help. German and I are hoping for your
understanding of our difficult situation and will wait for your help.
Update as of December 11, 2011.
We are sincerely grateful to Russian Help Fund for agreeing to pay
for donor's bone marrow harvesting (10,000 euros). Therefore, we now
need to raise 5,000 euros for the costs of donor search and 2,500 euros
for delivery of transplant.
Update as of February 8, 2012.
Gera is practically always at the hospital (Tyumen Regional Children's
Clinical hospital). Every 5 days he gets blood transfusions, as he is
not producing his own blood cells. Until the time a donor is found, Gera
will have to be hospitalized. A donor search was paid for in full, but a
donor was not found yet.
Update as of September 7, 2012.
A donor for Gera was found at the International registry, and
transplantation was preliminarily scheduled for October.
Gera is now undergoing tests in Tyumen. He is still receiving
blood transfusions and takes Exjade.
Update as of October 4, 2012.
Gera came to R. Gorbacheva Pediatric Hematology & Transplantation Institute
for transplantation of bone marrow from a matching unrelated donor who was
found through International registry. Transplantation was scheduled for October 9th.
Gera is undergoing conditioning and he is feeling well.
Update as of October 27, 2012.
Gera is recovering after the transplantation with great difficulty.
Antibiotics brought the fever down, but the leukocyte count remains
very low. Besides the boy has a bad mucositis and cannot eat or drink.
He is getting food and drugs intravenously. The boy is administered
pain killers, Actovegin, immunosuppressant Ñóñlosporinum as well as
Cansidas to prevent fungal infections. In addition to that Gera
is having blood and platelet transfusions.
Update as of November 11, 2012.
Gera's mucositis was taken under control. He feels much better and began eating
by himself. He is even allowed to go for walks. Gera's leukocyte count grew somewhat.
He receives antibiotics, immunoglobulin Octagam and an antifungal drug Cancidas.
Next week he is planned to have a control puncture.
Update as of November 30, 2012.
Control puncture showed that Gera is in remission and donor's bone marrow
is engrafting successfully. He feels better and blood counts had improved,
and the doctors allowed his transfer to outpatient unit.
The little boy has mild skin GVHD and was prescribed low doses of hormonal
drugs. An antifungal drug Cancidas was replaced by Vfend.
Due to hormonal therapy Gera has fluctuating moods, but it does not stop
him from active participation in holiday celebrations at the hospital.
Update as of January 23, 2013.
Gera's graft does not function good enough. It was decided to replant stem
cells to him. Donor's approval of the additional stem cells harvesting
was requested. The boy is in the day patient facility. He attends hospital
for blood and platelets transfusion; from time to time he takes Neupogen
to boost white cells generation, as well as Octagam and Albumin.
Hormone therapy was discontinued, but the boy still takes preventive
doses of immunosuppressant Ñóñlosporine and Vfend. Cytomegalovirus was
overcome; NeoCytotect was discontinued. Despite the low blood count the
boy feels quite well.
Update as of February 14, 2013.
Infusion of donor stem cells is scheduled on February 15. Gera
is still being treated with Octagam. Due to Neupogen the leukocyte
count has grown a bit higher, but platelets and hemoglobin need
to be transfused more often than before.
Update as of February 20, 2013.
On 15th February Gera was infused donor's cells. On 18th February his
blood counts dropped, he received blood and platelets transfusion and
was transferred to a day hospital. Gera feels ok. After donor's
cells transfusion, his blood pressure rose, but now it is back to normal.
In about a month it will be possible to evaluate whether donor’s cells
infusion helped to stimulate donor's bone marrow activity.
Update as of March 20, 2013.
Gera continues to be observed as an outpatient, still takes Octagam
and receives blood and platelets transfusions. His white blood cells
counts slightly went up, but hemoglobin is still low and platelets do
not stay within a normal range. The boy takes antibacterial and
immunosuppressive drugs and Vfend in prophylactic doses.
Recently Gera was running a fever that could've been caused by infection
in the central catheter. The catheter was removed and for tomorrow
Gera is scheduled for insertion of a new catheter, control puncture
and biopsy - the results will be ready in two weeks.
Update as of April 25, 2013.
At the end of March German was hospitalized with immune fever, for three
weeks the little boy had a fever and received antibacterial therapy.
Currently German is treated on an outpatient basis, is feeling unwell,
is listless, and sleeps a lot. Following the results of the lumbar puncture,
the donor transplant has engrafted, but so far is not working well.
German receives platelet transfusions once or twice a week, is treated
with an immunoglobulin Octagam, and receives blood transfusions
approximately once every three weeks. The boy continues his regimen
of immunosuppressants (Cyclosporine has been supplemented by Sirolimus)
and Vfend. German is very tired of all the treatments and is missing
his beloved grandma who is waiting for him at home. The little boy
dreams of a magic wand: "I would go to Tyumen or make it so
that grandma comes to me."
Update as of May 30, 2013.
Unfortunately, donor's bone marrow does not function well in German's body:
his blood counts are low, and nosebleeds started to appear. On 28th of
May German underwent spinal biopsy. Next treatment will
depend on test results.
Gera is being seen as an outpatient. He receives blood and platelet
transfusions as well as immunoglobulin Octagam, antifungal Vfend and
higher doses of immunosuppressors. Lately he's had pain in legs caused
by muscle athrophy, which was improved on Zometa therapy. Gera feels
rather well, he’s in a cheerful mood, moves a lot and tries to dance.
Update as of July 1, 2013.
Based on the spinal biopsy, the donor transplant has fully engrafted;
however, German's bone marrow produces antibodies that disrupt its functioning.
The doctors' council at R. Gorbacheva Institute of Hematology and
Transplantation decided to administer treatment with the immunosuppressive
agent Mabthera. Gera also continues therapy with Cyclosporine, Octagam,
Zometa and Vfend. Sirolimus has been cancelled. Gera receives blood
and platelet mass transfusions from time to time. Leukocyte production
is stimulated with Neupogen.
Gera feels rather well. He's made friends with a boy who lives next door,
and the kids go for walks and play together. German's dad has returned home
to Tyumen, but now his beloved grandma has come to visit.
Update as of July 31, 2013.
After four immunosuppressive therapy courses courses with Mabtera Gera's
leukocyte count rose, but the platelet and hemoglobin counts remain low.
Due to frequent blood transfusions the ferritin level in the boy's blood
is too high so he was prescribed Exjade.
The boy is also taking Ñóñlosporinum, antibiotics, Octagam, Vfend as
well as medications for the heart (German's right atrium is enlarged).
A while ago the boy had an immune system fever, but when he started to
take hormones the temperature went down, and now Gera is feeling ok.
He loves dancing to music and does that whenever he has a chance.
Update as of September 10, 2013.
Gera is monitored at day hospital, he feels rather well. White cells
count is within the norm. Hemoglobin count is stable at 83, plateletes
count is increased thanks to weekly infusions of Nplate. Last month
no blood or platelets transfusions were required. The boy continues
intake of Exjade, Vfend, Cyclosporine and antibiotics.
Last week analysis for cytomegalovirus titer showed increased quantity
of virus, so Cymevene was prescribed to treat it. The little boy feels
rather well, he is more active and eager to run with other kids on the
playground, but his mother won't let him do it yet.
Update as of October 11, 2013.
German still does not require blood transfusions: his blood counts are
stable, while platelet count is on a lower side of the norm.
Nplate injections are ongoing.
CMV is under control, and Cymevene was cancelled. Gera receives antibiotics
and Octagam to control bacterial infection. Gera also continues to receive
low dosage of Cyclosporine and Vfend to control fungal infections.
Lately he has been much more active: he tries to run whenever possible
rather than walk and spends much time outdoors collecting the fall leaves.
Recently, he started to have sessions with a volunteer speech therapist,
he enjoys them a lot.
Update as of November 19, 2013.
Thanks to therapy with Nplate, Gera managed to go three months without blood
transfusions, but after the drug withdrawal (the drug was unavailable),
his blood counts plummeted. Now Gera is receiving blood and platelets
transfusions again. AdVita fund and Dmitry Malikov's charity purchased
7 bottles of Nplate - this should be enough for 7 weeks of treatment.
Therapy is planned to resume tomorrow. Despite the weakness, drowsiness
and poor appetite, Gera stays optimistic and expects to return home to
his beloved grandmother soon.
Update as of December 22, 2013.
Resuming the Nplate therapy gave the desired effect: there has been
an increase not only in plateles, but also in the hemoglobin count,
and presently Gera does not need any blood transfusions.
The boy is well and lively. If everything goes well, Gera's doctors will
allow him to celebrate the New Year in Tyumen, at home with his
beloved grandmother. Gera recently attended a Christmas tree
party thrown at the hospital and became overjoyed with all the
gifts he received. Thanks to the speech therapy sessions,
Gera learned to pronounce the R sound and now "rrrrrroars"
all the time.
Now Gera is being tapered off the steroids he was put back on during a
break in treatment with Nplate. Therapy with Cyclosporin and Vend
Update as of January 25, 2014.
Gera was very happy that doctors let him celebrate New Year at home
in Tyumen. On January 8th, the boy and his mother returned to St. Petersburg.
After two-week break from taking Nplate, the level of platelets dropped,
but was controlled without blood transfusion. Hemoglobin and leukocytes
are currently stable. The boy restarted Nplate therapy. Also, Gera
continues to receive Cyclosporine and Vfend as maintenance, and
every two weeks he is receiving immunoghlobin therapy.
Gera is feeling rather well, and loves to spend time outdoors.
He is very happy to play in the snow and loves to slide down the hill.
Update as of February 27, 2014.
After he had been taken off immunosuppressants, Gera's skin GVHD got worse
and therefore he was put back on Cyclosporine and hormones.
He is also taking Vfend and IVIG.
Currently his GVHD is controlled, but his platelet counts are down. He is
administered Nplate and is scheduled for another course of MabThera. Next
week he is scheduled for puncture.
Gera is feeling fine. He has a very good appetite but his mood changes with
a lightning speed. His dad promised to come from Tyumen in late March and
the boy is looking forward to his visit.
Update as of April 2, 2014.
Gera is currently monitored as a day
patient. He is feeling much better. The second course of MabThera was
cancelled: after Nplate Gera's blood counts finally went up.
The follow-up puncture was normal. We are still waiting for the
results of trephine biopsy. Gera has no signs of skin GVHD and is
gradually taken of hormones. He is still taking Cyclosporine, an
immunosuppressant, and VFend.
Lately he has been very active and is really enjoying long walks.
Tomorrow is Gera's birthday: he is turning 6! He can count on
receiving a couple of new LEGO sets: his parents, grandma and uncle
are well aware of his wish list.
Update as of May 5, 2014.
When his doctors attempted to lower the
dosage of Cyclosporine and hormones, Gera's skin GVHD flared up and
his platelet counts started falling. So for now he has returned to the
prior levels of immunosuppressant therapy. The doctors have also been
unable to increase the length of time between Nplate injections.
Further treatment will be discussed shortly.
German is currently down with a cold, but nevertheless is feeling
alright. He is still active, runs a lot, and is looking forward to
warmer weather and another visit to his beloved botanical gardens. In
poor weather, Gera spends time playing with Legos and reading: he’s
doing a great job reading by himself.
Update as of June 10, 2014.
Since Gera's PLT count remained stable,
the doctors once again tried to take him off NPlate.
The boy was off the medicine for 20 days. Initially his blood counts
were normal, but then the PLT count started going down.
Tomorrow he will have another NPlate injection. The doctors are still
deciding on further treatment.
Some time ago he was taken off VFend, the antifungal agent, because
the doctors thought that it might affect the bone marrow functions.
Shortly afterwards the tests showed low levels of Cyclosporine in
Gera's blood and his doses of immunosuppressants were increased.
He shows almost no signs of skin GVHD and was taken off the hormones.
To avoid another GVHD attack, Gera's mom banned him from eating any
The boy is feeling well. He is still active and cheerful, but now that
his PLT count is so low, he will need to be careful not to get bruised
Update as of July 14, 2014.
Recent control puncture showed that the
bone marrow transplant had engrafted at 100%, but unfortunately, it is
not working yet at full capacity. To date the results of the biopsy
haven't been received yet.
Every possibility of transplant stimulation has been exhausted. The
only effective one was Nplate, if it is continuously administered. In
the near future German will restart therapy with it. Russian Help fund
promised to help with purchasing of Nplate.
Last week Gera contracted intestinal infection. Thanks to therapy
provided, he started feeling better and happier, but his energy level remains low.
Update as of September 9, 2014.
Over the last month and a half German
was once again administered Nplate: first weekly and then biweekly.
His PLT count remains at 200.
Lately his liver tests showed sharp increase, but hepatoprotective
drugs brought them back to normal. He is still on Cyclosporine because
otherwise he gets GVHD attacks.
He also continues taking Exjade.
Otherwise he feels fine and is happy to play Lego or go for walks all
day along. He particularly enjoys visiting Yelagin Island. Reading is
his other passion, but he is not that keen on writing or counting.
German and his mom even registered with the local library: the boy is
fascinated by the experience of selecting books to read.
Update as of November 11, 2014.
Gera has been treated as an outpatient.
He receives injections of Nplate weekly and currently his platelet count is good.
The boy feels well, although recently there were some issues with
unstable blood pressure. Gera currently has a minor cough, and he is
seeing a pulmonologist.
The kid is doing well, he is very active, and still loves reading and
playing with Lego. Gera is waiting for the New Year gifts. While his
Christmas wishes are changing every day, he promises to make up his
mind about what he wants from Santa when he writes him a letter.
Update as of December 16, 2014.
Gera continues to undergo therapy at
an outpatient clinic. He feels fine, and the doctors manage to take
care of occurrences of GVHD with the help of Ciclosporine. His immune
system has recently started to respond less to Nplate: his thrombocyte
levels haven't been rising above 70. Further treatment is being
German and his mom plan to spend the New Year in St. Petersburg. Gera
has been waiting for the holiday and hopes to get another Lego for a present.
Update as of January 27, 2015.
Gera is still under the care of
doctors in the day patient facility. Nplate is injected on regular
basis. Although the medicine does not work as well as previously, his
blood count does not drop to the critical level and blood transfusion
is not needed.
The doctors are discussing a course of Atgam and the third bone marrow
transplantation, as a subsequent treatment, but the final decision has
not been made yet.
At present Gera's cyclosporine level in blood has dropped, and skin
GVHD aggravated again. Advantan and Elidel ointments help to cope with
the GVHD manifestations. In addition, recently Gera's liver values
rose, and he takes Ursosan.
Gera got a lot of presents for the New Year, he attended several
Christmas shows and took part in a range of events and master classes.
At present, the boy is getting ready for school. He can already write
in block letters well, but prefers Lego constructors and cartoons to
practicing letters in a notebook.
Update as of March 10, 2015.
The doctors decided to administer
treatment with high doses of the immunoglobulin. There is also a
possibility of therapy involving one more cycle of Atgam. The boy
already received Octagam therapy, but it didn't, unfortunately, change
the levels of platelets. He continues to receive regular injections of
Recent lumbar puncture showed that marrow transplant had fully
engrafted. The bone marrow biopsy results are pending. Gera still has
mild skin graft versus host disease symptoms, and he continues to
receive low doses of hormone therapy.
The boy is feeling well, he is very active and cannot wait for his
birthday and, of course, presents. He is not as enthusiastic about
getting ready for school, but continues learning to write with his mom.
Update as of April 10, 2015.
The biopsy showed that German's bone
marrow produces platelets in a sufficient amount, but for some reason,
these cells do not reach the periphery.
A week ago, his skin GVHD aggravated, but after initiation of hormone
therapy, Gera's skin condition improved and his platelet count
increased. Treatment with mesenchymal cells is being considered.
Therapy with Nplate continues.
Gera feels well and active. He celebrated his seventh birthday at the
children's city "Kidburg": he tried himself in the role of a postman,
policeman, fireman and farmer.
Update as of May 19, 2015.
Germans's platelet count had remained
normal for about three weeks without NPlate. Now his platelet count
has gone down and he is once again administered NPlate. He is also
continuing the hormonal therapy: each time the doctors lowered the
dosage, he would get another skin GVHD attack, but they finally seem
to have found the optimal dosage.
The boy is feeling fine. He tries to be outside as much as possible
and has recently started biking without the support wheels. Gera's
newest passion is Harry Potter. He is still working his way through
the first book, but is already completely absorbed by the wizard world.
In the meantime, German's mom is putting together the application for
school: next year her son will start the first grade.
Update as of June 22, 2015.
Doctors have decided to postpone active
treatment for German and to continue his maintenance therapy. Skin
GVHD is not apparent now and the doctors are lowering his hormonal and
immunosuppressive drugs very slowly in order to avoid a recurrence of
GVHD and a sharp drop of his blood counts.
Gera's Ciclosporin level is normal, his pressure is not rising, and
his thrombocyte counts stays within 50 000 without transfusions and
maintenance therapy with Nplate.
The boy feels well, is happy, and goes for walks in the park with his
mom. Yesterday, German was out on the gulf for the first time in his
life - he walked barefoot along the beach (his mom did not let him
walk into the water, as it was cold) and built sandcastles.
Update as of July 30, 2015.
Two weeks ago Gera was hospitalized at
Gorbacheva Institute with bilateral otitis, accompanied by high fever.
Thanks to the antibiotic therapy the boy feels better now. Currently
his treatment includes also hormones and immunoglobulins.
Gera's blood counts are a little low, and he receives injections of
Nplate as needed.
The boy feels rather well, but wants to go home, and the doctors have
promised to discharge him from the hospital in a week, if everything
Update as of September 15, 2015.
Gera recovered after the infection,
and his blood counts returned to normal. He does not need blood
transfusions and receives Nplate injections every 2 weeks. Gera still
has mild skin GVHD, and he receives immunosuppressive drug Rapamune as
well as hormonal ointments.
German feels rather well. He is active and happy. This year he
started 1st grade, and he loves his new status, studying with his
teacher and time with his friends (Gera is homeschooled, but with
doctors' permission he spends time with his classmates).
Update as of October 20, 2015.
German is continuing maintenance therapy with Nplate.
He receives injections every two weeks, depending on his platelet count.
At this time, the medication is paid for by a corporate sponsor, Lenenergo.
German still has mild skin GVHD and receives therapy with Rapamune and Advantan ointment.
He is continuing studies under 1st grade curriculum.
Most of all, he enjoys playing with other kids and receiving stickers
for doing a good job. Lately, he has also developed an interest in dinosaurs
and he can read magazines about them to no end.
Update as of November 23, 2015.
Gera is continuing Nplate therapy.
An injection is currently effective for about 3 weeks. He had
recently had exacerbation of skin GVHD and Rapamune dose was
German feels rather well and continues his studies at the 1st grade.
Recently he began learning English with Yulia, a volunteer. He still
loves dinosaurs and dreams of getting Jurassic World Legos for
Christmas, but more than anything he wishes to be transported back to
that time and see everything with his own eyes.
Update as of January 28, 2016.
After Gera received three injections
of Nplate, the platelet count began to grow. The nosebleeds have
stopped. The doctors decided to stop giving the boy this drug
temporarily and watch the dynamic of the blood parameters. Because
Gera is taking Rapamune, the GVHD of skin is under control now.
Gera feels rather well, he is in a fine spirits. He is studying the
program of the first grade in school with the help of his mum (his
school is closed because of influenza). The rest of the time he is
playing Lego and his favorite toys - dinosaurs.
Update as of March 3, 2016.
Gera is still seen as an outpatient and
once a week he receives Nplate injections. He will soon have complete
Skin GVHD still manifests itself, becoming more acute when German's
blood counts drop. He receives therapy with Rapamune.
Gera feels rather well, but lately it has been difficult to talk him
into visiting the hospital for procedures. Mostly he stays at home:
doing homework, studying English with a tutor and enjoying reading.
Aside from Harry Potter, Gera developed a liking for Pushkin's
fairytales. Recently he became a library member with his mom.
Update as of March 31, 2016.
Gera is undergoing control tests in
Gorbacheva Institute. The puncture showed a good functioning of bone
marrow. All the lineages are present and functioning. The results of
trepanobiopsy are not ready yet.
Gera's platelets are still unstable and they have to be maintained
with Nplate injections. There was the discussion of replacement of
Rapamune by another immunosuppressive drug.
Gera is seen at the day hospital; he feels quite well. He is not as
much interested in studying by the end of the year, and prefers to
watch cartoons and play with Lego.
Update as of April 29, 2016.
German is still seen as a day patient
and about every two weeks he receives Nplate to raise his platelets.
Lately, his skin GVHD worsened - most likely, because Rapamune is not
being absorbed well. The plan is to transition him gradually to
Cellsept, another medication.
When the weather is good, Gera and his mom go out for walks. He
continues following school curriculum: although he is tired of
studying, he does well on tests.
Update as of June 21, 2016.
The doctors decided to offer German
another round of Mabthera treatments; the paperwork is currently being
processed. In the meantime, the boy continues the therapy according to
the previous schedule: Nplate injections every three weeks. German's
skin GVHD has improved; he continues taking small dosages of Cellcept
and Rapamune. The boy reads voraciously (he enjoys short stories by
Nosov and Charushin), is studying multiplication tables, and continues
English lessons with a volunteer. Overall, German's mood is good,
though he often feels sluggish because of his low hemoglobin levels.
Update as of August 5, 2016.
German feels rather well and his skin GVHD symptoms have subsided
(he continues taking low doses of Rapamune and Cellcept). His blood counts
are pretty good thanks to Nplate therapy. His doctors decided to postpone
Mabthera therapy and return to considering it in fall, after bone marrow
biopsy that was scheduled for end of September - early October.
For now, Gera and his mom traveled home to Tyumen for monitoring by local
hematologists. They plan to return in late August, because in September
Gera will start school.
Gera has not been back home for almost two years. He has already seen his
relatives and is now going through his books and toys and waiting for
his friend's return from vacation. It is very hot in Tyumen right now,
so most likely his family will soon relocate to dacha soon.
Update as of September 7, 2016.
Unfortunately, German spent almost
entire time he was in Tyumen in the hospital: he developed several
viral and bacterial infections at the same time. His platelet count
was maintained by Nplate therapy, and the other counts did not come
German overcame his infections by now, and he recently returned with
his mom to St. Petersburg. Gera feels rather well, but he is upset to
have missed the first day of school celebration.
Update as of October 18, 2016.
German recently developed a respiratory
infection and tonsillitis and was seeing a pulmonologist at the
Raukhfus Hospital. He was prescribed antibiotics and inhalations.
The infection is now gone; the boy is feeling fine. He is really
enjoying his classes with his tutor.
Gera is currently going through his follow up exams. He is still
taking Nplate as necessary. Therefore he does not need platelet
transfusions. His further treatment will be discussed at a consult
with Moscow experts.
Update as of November 22, 2016.
Based on puncture results, donor's bone marrow engraftment is normal,
but cell count has gone down. Spinal cord biopsy results are not yet ready.
Blood counts are not decreasing noticeably, and Nplate injections every 3 weeks
allow maintaining platelet count at acceptable level.
Immunosuppressive therapy with Rapamune is ongoing.
German's lungs are in order, but he recently had a viral infection and is
receiving therapy with immunoglobulins.
He feels rather well and continues studuing under 2nd grade curriculum.
German only had one "B" in math in the 1st quarter - he was not
too enthused about studying the multiplication tables.
Gera goes to the library and takes voice classes. He also hopes to take
robotics classes in the future (currently, there are no available spots).
Staying true to his passion, Gera asked Father Frost for another Lego set
for the New Year celebration.
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