My name is Svetlana Nikulina and I am asking for help. On July 5, 2006 our daughter Veronika was born.
She is a very active, happy and fun-loving girl.
After Veronika turned 1.5 years old, she started getting sick with colds often. At the age of 22 months,
she developed a fever. At first, she was admitted to a hospital in Volkhov and then she was transferred
to Children's hospital No.1 where she was diagnosed with acute lymphoblastic leukemia.
I currently do not work as I care for our daughter. My husband's salary barely covers necessities.
Veronika has a long-term therapy ahead of her, while the medications and testing are very
expensive. Please help!
Svetlana, Veronika's mom
187401 Leningradskaya oblast, Volkhov,
ul. Derzhavina, d. 36 kv. 13
+7 (921) 378-94-75
Update as of July 31, 2008.
By now we went through two chemotherapy blocks. They were difficult and Veronika is
now recovering. She has four more large blocks ahead of her. The hardest part was
coping with allergy to asparaginase. Veronika's eyes and lips were swelling and she
had spots on her body. Veronika was given anti-allergy medications. We purchased
Zyrtec, as well as Latran, Mycomax, Lazolvan, Espa-lipon, Ubiquinone, Vibrocil and
I would not have been able to buy medications without the fund's help. I only have
money to buy food, and have nothing left for the drugs.
I would like to thank AdVita fund as well as St. Petersburg's Parents fund for
the timely purchase of diapers and wipes, which we really need.
With gratitude and hope for further help,
Update as of September 12, 2008.
Veronika did not feel very well during the fifth block, but thanks to the therapy
she was prescribed prior to the block, she avoided allergic reaction this time.
In three weeks she will start the final, sixth block.
Update as of October 2, 2008.
In the last period, Veronika underwent the final two large chemotherapy
blocks. These two blocks were extremely difficult. Veronika had a very
high temperature and vomited constantly. The blocks included asparaginase,
which my daughter has a terrible allergy to. Before the asparaginase,
Veronika received expensive anti-allergy drugs, but she developed a rash
all over her body anyway. She had spots all over and developed swelling.
She did not feel well. The doctors were taking her off the medications,
but then giving them to her again. After the blocks, Veronika was
vomiting every day and was fatigued.
We still have a long-term therapy ahead of us. Please help us with buying
With much gratitude and hope for help,
Update as of December 8, 2008.
Veronika has gone through 6 blocks of chemotherapy. After the blocks
there were intestinal problems. The girl had 4 punctures and 2 punctures
had to be skipped because she felt too bad. (The girl felt a lot worse
after the first puncture: Veronika could not eat or drink and vomited.
This went on for over a week. By the next planned puncture Veronika was
not recovered and had to skip it. At the third puncture the doctors
applied different drugs. After that puncture there remained a concretion
on her back. After a few days she felt bad again: Veronika was having IV
drips again.) She is now recovering. I would like to thank everyone who
is helping us.
Update as of January 10, 2009.
Veronika completed all the hard, difficult chemotherapy cycles. She
feels relatively well. This week we will be discharged so that we can
continue therapy at home.
We are very grateful to everyone! Thank you, AdVita fund, thank you,
everyone who visits the site and responds, thank you, donors, for being
there and helping our kids, for mediations that you help us buy.
I would like to thank the girls who are helping us and are always there
at the difficult moments. Thank you, everyone, your help is invaluable,
and we really need you.
Update as of June 18, 2009.
Veronika is at home. She is taking supporting therapy medications.
She drinks Essenciale and washes her mouth with Tantum verde. Once
every two weeks we come to the hospital for consultations.
We are very thankful to AdVita fund for Methotrexate made in Austria (it is
a supporting therapy drug).
Veronika is learning to count. She draws and works on puzzles.
Update as of December 9, 2009.
Veronika will soon have the last puncture. Afterwards, she will
start maintenance therapy in pills only. We are very thankful to Advita
fund for Methotrexate.
Update as of December 25, 2011.
Veronika and I are now at the hospital (Gorbacheva Pediatric
Hematology & Transplantation Institute). Seventeen months after
completing maintenance therapy, Veronika had a relapse. Her blood
and blood of her younger brother Misha is now being typed for
Misha was born in 2010 and he is now 18 months old.
His grandmother moved in to care for him, while Veronika and I will
be on treatment. Veronika does not feel very well. She started the
first chemotherapy cycle. We are waiting for the results of puncture,
which will help determine further treatment. Right now we need help with
paying for typing for Veronika and Misha (30,000 rubles).
My husband works,
but he earns only 9,000 rubles, and we also get Veronika's disability pension.
We live in the region, in the village in Volkhovsky district, and we don't get
any additional support for children. If Misha does not match Veronika as a donor,
we will have to pay 15,000 euros to the International registry
for the donor search.
Update as of January 18, 2012.
Based on the matching results Veronika's brother can be her donor! There is a
potential problem with the weight difference between Veronika and her younger
brother, because the number of cells the doctors will be able to collect from
Misha might not be enough for the transplantation. Veronika is now administered
the second anti-relapse chemotherapy course, and altogether there is going to
be six of them. Once she's done with all of them Veronika is going to have a
full examination, and the doctors will then consider a bone marrow transplantation.
Update as of February 8, 2012.
Veronika completed the 3rd cycle of anti-relapse chemotherapy.
She is not tolerating it well, as her mouth was affected and she had strong cough.
Based on test results, she was prescribed Cancidas (1 bottle for 2 days).
The duration of therapy will depend on Veronika's response.
She is now in cytopenia and gradually recovering.
Update as of February 29, 2012.
Veronika was getting ready for the fourth chemotherapy course,
but the girl had a fever, and chemotherapy has been postponed.
Veronika is now on antibiotics. Also she is administered Meronem,
Zivox, Tazocin, Cansidas and Vfend since she still has bronchitis.
Update as of March 23, 2012.
The 4th cycle of chemotherapy was finally administered, but
the control puncture shows residual minimal disease.
Veronika still needs antibiotics and antifungal drugs.
Update as of April 10, 2012.
Veronika had a very hard time tolerating chemotherapy.
She had high fever and obstructive bronchitis, and is currently
taking antibiotics and Vfend. Based on control puncture, she
is in remission, although signs of minimal residual disease are present.
Nika is now a day patient. Complete examination is planned to be
followed by transplantation of bone marrow from her brother.
Update as of April 28, 2012.
Veronika is being monitored as the day patient. There are some signs of
infection, she is treated with antibiotics and Pulmozyme inhalations.
Update as of June 27, 2012.
On June 4th Veronika underwent bone marrow transplantation from her brother.
She is now recovering.
Update as of August 1, 2012.
Veronika has recovered after the transplantation.
There are no signs of infections or a GVH reaction, so
the girl was transferred to the day patient facility.
The latest donor transplant retention test is not ready yet.
Update as of September 20, 2012.
Veronika has signs of transplant engraftment. She is in remission.
Veronika receives an immunosuppressive drug Tacrolimus and Vfend.
Update as of October 27, 2012.
Based on the latest puncture results, donor's bone marrow did not engraft.
Veronika recovered with her own cells, and achieved remission.
The doctors plan to move her to maintenance chemotherapy and monitor her.
She now has a cold and coughs a lot, and takes antibiotics and Orungal
to prevent a fungal infection (Veronika is allergic to Vfend).
Update as of November 30, 2012.
The last puncture showed that Veronika's bone marrow has 8% of blasts,
and it was decided to repeat stem cell transplant from her brother.
Veronika feels rather well and takes Purinethol and methotrexate under
maintenance regimen. She had no more allergic reactions to Vfend, so she
is now taking it again. Her cough is controlled with Pulmicort and
Transplantation was scheduled for December, although exact date is not yet set.
Update as of December 14, 2012.
Veronika was hospitalized for repeated related transplantation, but she got fever.
The reason for this, doctors believe, was activation of fungal infection in her
lungs. She receives Ampholip and her temperature began going down.
Veronika is not receiving Vfend yet.
Unfortunately, she was observed to have a progression of relapse (percentage
of blasts in bone marrow is gradually incresing). Next week, Veronika is
planned to undergo a cycle of anti-relapse chemotherapy, followed by
another one after the New Year. Afterwards, stem cell
transplantation will be considered.
Most likely, this time one of the parents will be a donor rather than her brother.
Update as of January 18, 2013.
After anti-relapse chemotherapy cycle under FLAG regimen that was administered
before the New Year, Veronika achieved remission. She is now recovering after
chemotherapy, as her hemoglobin and platelet counts are still low. Leukocyte count
went up thanks to stimulation with Leukostim.
After Veronika's complete recovery, the doctors plan to refer her for haplodentical
bone marrow transplantation. Her mom will most likely be a donor.
Update as of February 19, 2013.
Bone marrow transplantation was not performed yet. After a course of high
dosage chemotherapy Veronika developed complications in her lungs and
intestine but they are under control now. The girl is at home since early
February, she is recovering. Leucocytes count is normal but hemoglobin
count is still low. Control puncture is scheduled for the near future.
Currently Veronika is receiving supporting treatment with Purinetol and
Metotrexat and additionally she is receiving antibacterial drug Tavanic.
Update as of March 15, 2013.
The follow-up puncture confirmed the remission, and on March 13
Veronika had a haploidentical bone marrow transplantation from her
mother. At present the girl has low blood pressure and her blood
counts are dropping too. Veronika was prescribed hormones, Sirolimus
as an immunosuppressive drug and Vfend to prevent fungal infections.
Update as of May 6, 2013.
Veronika has recovered after the transplantation, and two weeks ago she was
discharged to the day patient facility. The first puncture testified to a remission.
The donor bone marrow has taken root (95%) and is now functioning, although
Veronika's leukocyte and platelet counts are a little low. The minimal residual
disease test results are not ready yet. The doctors suspect intestinal GVH reaction.
The girl was prescribed immunosuppressive drugs and Vfend to prevent fungal infections.
Veronika has a cough and is weak. She was prescribed antibiotics and inhalations.
CT of the lungs is planned.
Update as of June 5, 2013.
Based on the latest puncture, Veronika is in remission, the donor bone marrow
engrafted and works well. The girl is seen on an outpatient basis, and she is
feeling OK. In mid-May Veronika contracted an infection, which antibacterial
drug Zyvox helped suppress. Mild skin GVHD is controlled with hormone creams
and immunosuppressants. CT is clean, the cough is gone, Veronika continues
supporting doses of Vfend. Veronika loves to draw and color, puts puzzles
together. In the evenings, when the sun sets, she takes walks. Recently,
the girl and her mom went to see The Town Musicians of Bremen at the theater.
Update as of July 9, 2013.
On July 6 Veronika was hospitalized with an attack of intestinal GVHD
and bacterial infection. The girl is on antibiotics, steroids and
immunosuppresants therapy. She is on IV feeding, and receives Albumin
and Mycosyst. For now, she does not feel well and complains of stomachache.
Control puncture showed remission, donor bone marrow engrafted and
functions properly,and her blood count is within normal limits.
Update as of August 9, 2013.
The doctors managed to control intestinal GVHD. Last week Veronika was transferred
to the day patient facility. The girl continues to take small doses of hormones.
Pulmonary infection was overcome with antibiotics and now Veronika experiences
only some residual effects, such as weakness and slight fever (37.2–37.3C).
She continues to take Vfend.
Generally the girl feels good. She draws and paints a lot; she also likes various
handicrafts, such as embroidery and making photo frames. Recently Veronika with
her mother went to ride on a merry-go-round to "Miraculous Island" theme park.
Update as of September 18, 2013.
The puncture done on the 180th day after bone marrow transplantation has
confirmed remission. However, because of the high relapse risk, a donor's
lymphocyte infusion is planned, as well as maintenance chemotherapy
after that. Veronika is being observed in a day patient facility.
Despite her cough and the low level of protein, she feels quite well.
Veronika receives Albumin drip, and control CT scan has been scheduled.
Antibiotics are helping to fight the light manifestations of mouth GVHD.
Due to allergy to Vfend, it was replaced with Noxafil.
This year is a first school year for Veronika: a teacher will come to
teach her at home twice a week.
Update as of October 18, 2013.
The doctors decided against additional lymphocyte infusion, as in
September Veronika had GVHD, which caused the inflammation of the mouth.
She was prescribed local hormone therapy, to which steroids in pill form
were added. She also continues to receive immunosuppressants.
Veronika takes antibiotics for bacterial infection, and she still
needs Noxafil to prevent fungal infections.
Veronika has a great yearning for learning and she cannot wait to see
her teacher every time. She enjoys studying and is interested in
everything - writing, reading, math and world around us.
She feels better, and decreased hormone dosage helped elevate her
mood and bring more energy.
Update as of November 28, 2013.
Veronika continues to be monitored as an outpatient. Mild GVHD of
mucous membranes still persists, and the GVHD of the skin has just
developed. Immunosuppressants Prograf and Rapamune, as well as steroid
creams and drops, help control the manifestations of Graft versus
Host disease. Hormonal pills are now canceled. Veronika keeps
receiving Noxafil to prevent fungal infections. Sometimes the
little girl feels weak, but in general she is doing well and
enjoys playing and drawing. Veronika continues to take great
pleasure in learning: it is so interesting. For example, she
and her teacher were memorizing the song "33 cows" the other day.
Update as of January 13, 2014.
Last week Veronika had fever, the causes of which are now being examined.
She is monitored at an outpatient clinic and taking antibiotics.
The girl is doing quite well.
In December, Veronika presented with intestinal GVHD again and was
prescribed with Entocort and recommended to follow a strict diet.
Now her intestinal condition is okay, and hormones have been
discontinued. However, since mild mucous GVHD still persists,
she continues to take immunosuppressants and Vfend.
Veronika spent the New Year's with her family, went to several
children's New Year's shows and got lots of gifts. After the winter
break, she resumed lessons with her tutor. She already mastered an
alphabet book, and now the tutor brings her books for newly
Update as of February 12, 2014.
In January Veronika had a bacterial
infection which was quickly treated with antibiotics. Recently she has
spiked fever and was once again prescribed antibacterial agents.
In general she is feeling fine, but her intestines bother her. The
tests showed disbacteriosis rather than intestine GVHD. She has been
taken off Entocort. The girl is still taking Noxafil provided by Rusfond.
First graders are now on holidays, so Veronika does not need to study,
but she is looking forward to resuming her lessons.
Update as of March 14, 2014.
Veronika is still being monitored as an
outpatient, her blood counts remain within normal limits. The results
of the biopsy the little girl underwent this week are not in yet.
Since testing confirmed Veronika's intestinal problems were caused by
chronic GVHD and not by the dysbiosis, as it was thought previously,
she was restarted on Entocort. She also continues to receive the
immunosuppressive medications Prograf and Rapamune, as well as
Noxafil, an antifungal medicine. Also, a course of treatment with
Zometa is planned to increase bone density.
Overall Veronichka feels well, although she might occasionally
experience weakness in the legs. Recently the little girl received
intravenous immunoglobulins to strengthen the body's defenses.
Veronika was happy to return to school after the school vacation - she
loves to learn something new and interesting.
Update as of September 23, 2014.
A while ago Veronika had an acute condition related to her chronic
intestinal GVH reaction. The doctors prescribed hormones, introduced
Cellsept again and increased the dose of Rapamune. Photopheresis
therapy is also planned.
Because of the hormones Veronika now has polyneuropathy. She has pain in
her legs and has to move around in a wheelchair. She is administered physical
therapy as well as all necessary medication, and the doctors hope that the
treatment and the gradual cancellation of hormones will help cope with
the neuropathy. As for leukemia, the girl is still in remission. Her donor
bone marrow is functioning well, and all her blood counts are normal.
In spite of all the complications Veronika enjoys her school classes with
her teacher. She is in her second grade now and she still loves to study.
Update as of October 23, 2014.
Veronika continues treatment for
intestinal graft vs host disease on the outpatient basis. Lately, her
temperature has been elevated due to the immune reasons, and the dose
of hormones was increased. The girl continues to to take Budenofalk
and Noxafil, and if needed antibiotics are prescribed. In addition,
Veronika received two mesenchymal cell infusions, and the plan is to
continue the treatment. She has not had photopheresis yet, but the
procedure is to start shortly.
Veronika's legs are still hurting and she tires easily, so she mainly
uses a stroller for mobility. Due to continuing hormonal treatment her
mood is changeable, and sometimes she complains about stomach pain,
but she is ready to study with a teacher no matter what condition she
Update as of January 13, 2015.
Veronika spent most of December in the
hospital with bacterial and viral respiratory infection and an
exacerbation of intestinal GVHD. The girl is again being observed at a
day hospital since December 30. The GVHD is now under control, the
condition of her lungs has improved, and she has no fever, but
Veronika continues to receive antibacterial and antiviral medications.
Noxafil, immunosupression, and hormones have now been cancelled due to
an intoxication of her organism.
CNS leukemia, fortunately, has not been confirmed and pains in her
feet are no longer a problem, but Veronika still has to move around in
a wheelchair: her muscles haven't gotten stronger yet. Veronika feels
fine. She is continuing classes with her teacher, and in her free
time she draws, reads, and makes ornaments with sequins.
Update as of February 16, 2015.
Veronika is still seen at outpatient
hospital, but she is not feeling very well: from time to time she gets
fever, weakness and gets tired quickly, complaining of increased pain
in the legs. Veronika gets painkillers, Zometa, calcium supplements in
high doses and Noxafil for preventing fungal infections.
She still has residual symptoms of intestinal GVHD but
immunosuppressive therapy was canceled.
Veronika still likes to learn, however, she has not been keen on
Russian class lately: there is just too much to write.
Update as of April 30, 2015.
Veronika is continuing treatment of
GVHD; hormonal therapy and six rounds of photopheresis led to a
significant improvement. Hormones were recently canceled, while
photopheresis will continue.
However, Veronika does not feel very well. She is very weak, has
swellings and sometimes her temperature rises. She takes antibiotics
Update as of June 1, 2015.
Veronika had to suspend photopheresis
treatment for skin and gastrointestinal GVHD because of continuously
elevated temperature. The doctors are now trying to identify the most
effective antibiotics. She also remains on Noxafil.
The puncture has showed remission; we are still waiting for the
results of the cytogenetic analysis.
Veronika is monitored as a day patient. She is not feeling that great
because of the fever, but when her temperature drops she gets livelier
and even tries to play.
Update as of August 6, 2015.
Veronika is still at the hospital. She
is generally feeling better, but is still bothered by intestinal GVHD
and colitis and every now and then spikes fever. Her blood counts
are low and sometimes she needs blood transfusions. Veronika is on
immunosuppressants, antibacterial and anti-fungal agents. The doctors
have temporarily taken her off the hormones.
When she feels better, Veronika reads, draws, does various crafting
projects and sometimes goes for a walk with her mom.
Update as of September 17, 2015.
Veronika is still in the hospital.
Recently, she withstood another exacerbation of ulcerative colitis,
but she feels better now. Intestinal GVHD symptoms are still present.
In addition, drug toxicity has resulted in renal complications.
Several medications, including anti-fungals, were paused.
Veronika feels relatively well; she plays, sometimes goes for a walk
with her mother and cannot wait to start studying with a tutor.
Update as of November 19, 2015.
According to complete puncture
results, Veronika remains in complete remission and donor's bone
marrow engrafted well.
The last three weeks she has been seen as a day patient. Until
recently she has been feeling rather well, but a few days ago her
temperature rose and leukocyte count increased. The doctors believe
that catheter infection is to blame, and Veronika had hers replaced,
while a port implantation is planned. She receives antibiotics, as
well as Prograf that contains intestinal GVHD, and Zometa to restore
bone tissue (Veronika still has leg pains).
She continues studying with a tutor and getting ready for the year-end
photo session that is organized by AdVita fund volunteers.
Update as of December 22, 2015.
Veronika is being seen as a day
patient. She does not feel too well, as skin GVHD has flared up again,
followed by systemic scleroderma involving arm joints. Veronika has
been prescribed Jakafi; in addition, she receives hormones and
Gleevec. To prevent fungal infections, Veronika takes Noxafil.
Due to hormone treatment Veronika sometimes has seizures in her arms
and leg pain. She is being treated for this and receives painkillers.
Veronika is in a good mood despite the complications. When she is not
in pain, she is happy. She takes pleasure in studying and goes for
walks sometimes. Her recent hobby is needlework.
Update as of February 29, 2016.
Following the resumption of therapy with
Jakavi medication, manifestations of intestinal GVHD have decreased
and Veronica's temperature also has went down.
Hormones and Glivec are now canceled, and antifungal
Noxafil drug is replaced by Mycosist medication.
The girl is observed as an outpatient of the hospital and feels
rather well overall. However, she does not have much energy and she
gets very tired after visits to the hospital.
Most of the time Veronica spends her days at home, she loves her
school work and enjoys scrapbooking, which she does with a
volunteer from AdVita fund.
Update as of March 24, 2016.
Veronika continues taking Jakavi. She still has residual intestinal GVHD.
Unfortunately, she developed scleroderma, a complication that makes it
difficult to move her arms. Veronika is receiving appropriate therapy.
In March she will have control tests.
Veronika is seen as a day patient, and she feels better.
At times, she feels fatigued and has to make a stop and sit down on
her way to the hospital. Veronika is visited by her teacher and Evgenia,
a volunteer who helps her with crafts. She loves creative classes and
always looks forward to seeing Evgenia.
Update as of April 15, 2016.
Veronika's condition is improving with
Jakafi treatments; she has fewer signs of scleroderma. She must remain
on this drug for at least four months, as well as continue physical
therapy. She continues to have minor gastrointestinal and skin GVHD.
Veronika is feeling rather well, though she still tires very easily.
She's following the school program with a home tutor, enjoys painting,
and colored eggs for Easter with an AdVita volunteer. She truly enjoys
Update as of May 10, 2016.
Veronika continues taking Jakavi and
Montelar, with the latter medication dose being reduced due to
improvement in her lung condition. Although skin and intestinal GVHD
symptoms remain, they are much less pronounced.
Veronika recently caught a cold and had an earache and febrile
temperature. It is mostly gone now, except for a bit of runny nose.
Overall, Veronika feels rather well: she goes out for walks, draws,
but gets tired easily. During May holidays she and her mom went to
see the fireworks and enjoyed them very much. With her neighbor
friend, Veronika loves playing and making up games.
Update as of June 1, 2016.
Veronika continues to be seen as a day
patient. Unfortunately, her skin GVHD worsened. During recent
medical board it was decided to increase Jakavi dosage and prescribe
Gleevec for scleroderma. Veronika's blood counts are normal, except
for elevated leukocytes. It may have been caused by her recent eye
inflammation. Liver enzymes are also higher than normal. Intestinal
GVHD had mostly subsided thanks to Jakavi therapy.
Also, Montelar dosage has been reduced as Veronika's breathing tests improved.
Overall, Veronika feels rather well except for periodic fatigue. She
finished the third grade and received awards for her good grades. She
is a bit moody. When she feels well, she loves to laugh, play with
her neighbor friend, make art with clay with him and draw.
Update as of June 22, 2016.
Veronika's GI and skin GVHD stabilized,
as have her liver enzymes. Her hemoglobin has gone down, while her
leucocyte count is going up, though it has not yet reached the norm.
The girl remains on Jakavi, Glivec, Montelar, and Ursofalk. Recently
Veronika was down with a cold, but it was quickly taken under control.
Overall, Veronika is feeling fine, but sometimes complains of lack of
energy. She takes walks and rides her scooter, though she tires
quickly. When she stays home, she plays with her neighbor.
Update as of August 3, 2016.
Veronika continues her treatment. Her
blood counts are good, but her liver function tests remain elevated.
She also has pain in her stomach and her legs. Veronika gets tired
very fast, with some days better than others.
Recently she took part in a children's festival and loved being photographed.
Update as of August 25, 2016.
Veronika is seen as a day patient at
Gorbacheva Institute. Her liver enzymes are still elevated, but are
no longer increasing. She still has skin GVHD, especially on her
feet, and it causes a lot of pain for Veronika. She may be referred
for photopheresis. In the next few days she will have CT of lungs,
because for some time already her lymph nodes have been enlarged.
Overall, Veronika feels rather well, but periodically she gets acutely
fatigued and on those days she is feeling blue. Otherwise, she plays,
draws and goes for walks.
Update as of September 15, 2016.
Veronika remains under observation
at a day hospital. Biopsy results show that all is fine.
Her lymph nodes have swelled up and doctors are investigating the
cause. Hepatic enzymes are at previous levels. Skin GVHD persists.
Lung CT scans reveal insignificant changes which do not warrant a
revision of the treatment plan. Medical treatment continues, and
includes Jakafi and Ursofalk, with the possible addition of Octagam.
Veronika goes for physical therapy, but her legs still tire easily.
She does not feel unwell and is usually in a good mood although she
experiences weakness and fatigue.
A few days ago, she went to Labrintum with other patients and loved
the museum, in particular the experiments.
Update as of October 18, 2016.
About a month ago Veronika developed
muscle weakness; she struggled to eat and to walk. The doctors
diagnosed her with myasthenic syndrome.
It took a while before the doctors were able to identify the right
medicine. Veronika is administered Kalymin and weekly injections of
MabThera. Jakavi is currently suspended. Kalymin treatment has
resulted in some improvement. The doctors are discussing further
Veronika's blood counts are normal but her liver function tests remain
elevated. Her lymph nodes shrank after Veronika caught a nasty cold in
mid-September and had to take antibiotics. She is still taking
Ursofalk. Veronika has lost a lot of weight because eating was such a
struggle. She generally feels down, although lately she started
playing on her tablet, watching cartoons and even sometimes having fun
with her neighbor.
Update as of November 7, 2016.
Veronika is seen as an outpatient of
Gorbacheva Institute. The girl feels better, myasthenic syndrome had
subsided. Cold has passed. Blood counts and liver enzymes currently
are normal. Veronika is undergoing photopheresis, plasmapheresis,
hormonal and antibiotic therapy. She also gets Kalemin, Ursofalk and
injections of immunoglobulin Octagam. Mabthera therapy has been
cancelled, administration of Jakavi also has not yet been resumed.
Veronika loves to draw, color and watch animated cartoons; she
especially enjoys the Disney Channel.
Update as of November 28, 2016.
About two weeks ago Veronika was hospitalized at Gorbacheva Institute due
to acute myasthenic syndrome that obstructed her breathing.
She is receiving necessary treatment, including hormonal, antibacterial,
and antifungal therapy. Veronika is taking Vfend, Ampholip, Cancidas,
Kalemin, and Octagam daily, while Ursofalk was recently canceled.
Veronika is not feeling too well, but she stays online quite a bit,
works on the crosswords and watches TV series.
Update as of January 14, 2017.
Veronika is monitored as a day patient.
She recently spiked fever with cough. She is currently undergoing the
The doctors are planning to implant a catheter for plasmapheresis and
MabThera injections. She still shows signs of myasthenic syndrome.
Veronika is taking Kalymin, Jakavi, Vfend, antibiotics. She is feeling
better and gets out of bed more often. Her mood is fine. She is home
schooled and is trying to catch up with the 4th grade curriculum.
Update as of February 11, 2017.
Veronika was recently catheterized and
is receiving photopheresis treatments and Mabthera injections. Her
myasthenic syndrome is less pronounced. The cold is gone.
She remains on Jakavi, Vfend, Kalymin, and is scheduled for plasmapheresis.
Veronika is feeling OK and is studying. She recently went to see the
Monster Trucks movie. She enjoys spending time with the volunteers on
the 11th floor of Gorbacheva Institute - sewing and making paper
Update as of March 16, 2017.
Veronika is being seen as a day patient
and she continues photopheresis therapy once every 2 weeks.
Myasthenic syndrome has subsided thanks to therapy. Veronika is
continuing to take Mabthera, Jakavi, Vfend and Kalymin. She has not
been referred for plasmapheresis yet.
Veronika feels rather well and enjoys taking ballet classes while at
the hospital and playing with other kids at 11th floor of the
Update as of April 13, 2017.
Veronika is continuing photopheresis.
She already finished 12 sessions. Recently, she had a blood test for
antibodies (due to myasthenia). Depending on the results, she may be
added plasmapheresis to her treatment schedule.
Veronika's myasthenic syndrome had subsided in regards to mobility,
but her facial expression remains somewhat altered. She is continuing
the same medications, except for Mabthera.
Veronika feels differently, but continues to enjoy her ballet classes.
Update as of May 18, 2017.
Veronika is monitored as a day patient at
the Gorbacheva Institute. She once again had elevated antibodies due
to myasthenia but MabThera treatment lead to a small improvement.
Veronika is still treated with Jakavi, VFend and Kalymin as well as
regular photopheresis procedures.
She is feeling fine.
Update as of July 7, 2017.
Veronika remains moderately affected by
myasthenic syndrome, but it does not worsen. As the antibodies caused
by myasthenia are above norm, she continues receiving photopheresis
therapy and Mabthera injections. Recently, her gastrostomy was taken
out. CT scan results showed improvement, and Vfend was replaced by
Veronika feels relatively well. Due to fatigue, she cannot walk for
extended time, but when weather is good she comes outside.
On July 5th she had her birthday, and on that day she went on a cruise
organized by AdVita fund for the patients. Veronika loved her
Update as of August 15, 2017.
Veronika continues having myasthenic syndrome manifestations.
She takes Jakafi, Noxafil, and goes for photopheresis once a month.
She is off Mabthera currently.
Veronika's legs hurt periodically, but she can walk short distances.
Overall, she feels rather well and loves playing table games with her neighbor.
Update as of September 15, 2017.
Veronika feels well and continues to
be seen as a day patient. She still has myasthenic symptoms, but she
gets better after monthly photopheresis sessions. She will also get
Mabthera injections this or following week.
Veronika still takes the same medications plus Ursofalk due to her
periodically rising liver enzymes.
Since the start of September, she began studying with visiting
teachers. Ballet lessons are also restarting, but Veronika had to
skip the first class due to her studies and was disappointed.
Update as of October 11, 2017.
Scheduled puncture confirmed
Veronika's remission. Myasthenic syndrome is still manifesting
itself. Once a week, Veronika's mom takes her to the hospital for
tests. If she feels well, Veronika receives Mabthera administrations
Photopheresis sessions were temporarily paused.
Veronika's leukocyte count is above norm, but the rest of indicators
are normal. Her liver enzymes are still unstable. Although it's been
a week since puncture, Veronika still suffers from pain in her back.
Overall, she feels relatively well, but unhappy to miss her ballet
classes because of school.
Update as of November 24, 2017.
Veronika is still on Jakavi, Noxafil,
Ursofalk and almost monthly MabThera injections. The doctors decided
to discontinue photopheresis after two rounds because of Veronika's
reaction to this treatment. Her hemoglobin count is still on the lower
side, white blood cells are normal and platelet count is somewhat
elevated. She still has systemic sclerosis and her liver function
tests remain unstable. The girl recently saw an ophthalmologist
because of her eye infection. She has been referred for further tests.
Some days Veronika feels better than others. She is always tired. She
was able to attend ballet and yoga a couple of times and was very
happy about this. She is now spending her time drawing and composing
her letter to Santa.
Update as of January 10, 2018.
Veronika was allowed to go home for
the holidays. On January 12th she will return to St. Petersburg. She
is continuing therapy with Noxafil and Jakavi.
In January she is planned to have a blood test for antibodies, based
on which a decision will be made regarding further treatment.
Veronika gets tired easily and cannot walk or play for a long time, so
she watches cartoons for the most part. Her hemoglobin remains low.
Update as of February 12, 2018.
Veronika's dose of Jakafi was decreased, but GVHD
manifestations grew substantially and she had to
return to the previous dosage.
Her hemoglobin is now normal, but
Veronika is still weakened and gets tired easily.
This week she is planned to have a test for antibodies, the results of
which will help determine if she will go for plasmapheresis.
Update as of March 22, 2018.
Veronika continues taking Jakafi. She recently had a cold accompanied
by a strong cough. Although she's gotten better she is still fatigued.
Her test results for antibodies should be ready, and today she is
scheduled to see her treating doctor regarding necessity of plasmapheresis.
Update as of April 26, 2018.
Last month Veronika had acute respiratory
viral infection with temperature, cough and difficulty in breathing.
It took her weeks to recover. Antibody test showed no change; however,
plasmapheresis wasn't performed because of the cold. Blood counts are
almost in the normal range.
Veronika's pain in the legs increased, but after a course of Pomegara
the pain subsided. She continues to take medications previously
prescribed to her.
Veronika feels well and is in a good mood. However, she gets quickly
tired from mental stimulation. She likes to color pictures and play
different games with her neighbor, and sometimes she goes to classes
in origami given on the 11th floor of Gorbacheva Institute.
Update as of May 22, 2018.
The doctors allowed Veronika to stay at
home during summer. Her blood counts are within normal ranges. Her
liver test values are close to normal. Veronika recovered from acute
respiratory viral infection. Leg pains are no longer bothering her.
Veronika continues to take Jakafi, Ursofalk, Kalymin and Cerepro, a
nootropic agent, prescribed by neurologist.
Veronika feels fine overall. She is almost done with the 5th grade as
a home-schooled student. Veronika does not go outside much these days,
because of allergy to flowering plants.
Update as of June 13, 2018.
It's been two weeks since Veronika
returned home. She got a bit sick upon return, but has already
recovered. Her blood tests are within norm, though her liver tests are
Veronika's legs don’t hurt, but get tired easily. She is almost done
with her Cerepro course, but will continue taking all other
Veronika is feeling well. She reorganized all her things, enjoys
walking with her brother and even bikes on occasion. She was promoted
to sixth grade.
Update as of November 19, 2018.
Veronika is in remission in regards
to her primary diagnosis, and the biopsy results show that she is
doing well. She is seen as a day patient and visits the hospital once
or twice a week. Her liver enzymes rise periodically. Based on
spirometry results, Veronika was referred to lung CT scan and she will
have it done this week.
Veronika continues taking Jakavi, Ursofalk, Kalymin and Trental.
Recently she had therapy with zoledronic acid that decreased pains in
her legs. Veronika feels relatively well, but she gets tired at times.
At home she draws, plays and does homework. She enjoys going to
physical therapy and doing exercises. Veronika also likes to go for
walks and made friends with a neighbor.
Update as of December 11, 2018.
Recently, Veronika caught a cold, but
she is already getting better. Her lung CT results are comparable to
last year's and there are no significant changes. In addition to other
drugs, Veronika was prescribed Singulair (or Montelar) for 3 months,
to be followed by control CT scan. She feels rather well and enjoys
taking walks. At home, she likes to draw Christmas trees. Her legs
are almost pain-free.
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