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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
Home address:
187401 Leningradskaya oblast, Volkhov,
ul. Derzhavina, d. 36 kv. 13
Contact phone:
+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 other drugs.
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,
Veronika's mom

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 expensive drugs.
With much gratitude and hope for help,
Veronika's mom

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.
Veronika's mother

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.
Veronika's mom

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.
Veronika's mom

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.
Veronika's mom

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 compatibility.
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.
Veronika's mom

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 other medications.
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 independent readers.

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 is in.

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 and Noxafil.

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 making art.

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 treatment plan.
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 necessary treatment.
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 crafts.

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 hospital.

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 Noxafil.
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 birthday celebration!

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 monthly.
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 slightly elevated.
Veronika's legs don’t hurt, but get tired easily. She is almost done with her Cerepro course, but will continue taking all other medications.
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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