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Hello,
I am Arina Baboshina's mom. My name is Lena. Arina is only 9 months old. She was born on June 1, 2009, on International Children's Day. She was a long-awaited child and we were very excited to meet her.
Since birth, Arina had low hemoglobin. We took her for an examination at the Regional hospital several times, but the diagnosis was never determined. In December 2009, Arina was finally diagnosed in St. Petersburg: myelodysplastic syndrome, plus another very rare genetic disease related to pancreatic function.
Because of this, Arina does not eat well and weighs only 7 kg at 9 months of age. The only chance to save Arina is for her to receive a bone marrow transplant. Unfortunately, the search results at the International registry showed that she has no matching donors and transplant will have to come from the parents.
In our family only Arina's father works, and unfortunately, we cannot afford to pay for the transplant. We spend a lot of money for nutrition for Arina (NAN formula and formula with fruit) and diapers (for 4-9 kg). We will also have to pay for travel and living expenses in St. Petersburg, and we may need to pay for post-operation treatment.
This is why we are asking you for help. Please help us save our little girl. Arina is a happy, lively and bright girl, and for now she does not know what is happening with her and what she still has to go through.
We are very hopeful for your help and will fight for our girl with all our might.

Respectfully,
Baboshin family


 

Update as of May 19, 2010. Arina is now at a rented apartment. She is preparing for transplantation. We are sincerely grateful to Russian Help Fund for deciding to raise funds for Arina for a cylinder for cleaning of the donor's transplant. Arina was prescribed Vfend, 100 mg daily.

Update as of July 1, 2010. Due to aspergillosis infection, transplantation was postponed. Arina is taking Vfend. Based on puncture results, there is no process escalation, but Arina needs frequent blood transfusions. She feels well and is being monitored as an outpatient.

Update as of October 6, 2010. Aspergillosis infection was successfully treated and the haploidentical transplantation from the father is planned for next week. The equipment was paid for by Russian Help fund. Vfend would be stopped during the transplantation and recovery and reinstated after the procedure to avoid a recurrence of aspergillosis.

Update as of November 3, 2010. Transplantation of bone marrow from Arina's father took place on October 19th. It has been two weeks, and her blood counts are growing gradually. Arisha tolerated chemotherapy well, but after antibiotics she has been having intestinal distress. Other than that she feels rather well.

Update as of November 14, 2010. Arina's intestinal issues were taken under control. She now takes immunosuppressive medications (Cyclosporine syrup). Due to recently discovered cytomegalovirus infection, she was prescribed Cymevene. Arisha feels rather well.

Update as of December 9, 2010. It has been 50 days since bone marrow transplantation. Control puncture showed full engraftment of transplant. Arina receives immunosuppressive therapy (hormones and Cyclosporine). She started to eat much better. There are no signs of GVHD. Arina's CMV infection was treated and she was taken off Cymevene.

Update as of December 29, 2010. Arina is in the hospital; she has an elevated CMV titer and receives Cymevene injections. Thank you to all donors, blood donors, volunteers who help us. Happy New Year to everyone!
Arina's mother

Update as of March 22, 2011. Blood counts are low, and donor's bone marrow fell below 20%. Repeat transplant is under discussion. Since Arina does not walk, she needs diapers for 7-18 kg weight.
Arina's mom

Update as of March 17, 2011. Arisha developed hypo-function of transplant due to cytomegalovirus infection. Now, after treatment, she no longer has CMV titer. Arina still has myopathy signs. Further treatment is under discussion.

Update as of May 3, 2011. Arina is undergoing therapy with Exjade that will remove excess iron that accumulated in her body due to frequent blood transfusions. She is planned to undergo second bone marrow transplantation.

Update as of May 20, 2011. Second transplantation is being planned for the end of summer. Arisha's leukocyte count increased, but she still needs platelet transfusions. Her doctors are planning to let Arisha go home so she could rest and regain her strength. Arisha will be monitored and transfused in Archangelsk Children's Clinical hospital.

Update as of June 25, 2011. The doctors have decided to have Arina under their control the whole summer, until the second transplantation. The puncture showed there are no blasts.
My daughter constantly needs blood transfusions but she's feeling all right. She is resting, going for walks and recovering.
Arina's mother

Update as of July 20, 2011. The doctors are allowing Arisha and her parents to visit home for a month. She will come back in mid-August.

Update as of September 15, 2011. Arina is at home and feels well. Her blood counts are normal. During her stay at home she never needed blood transfusions. It was decided to postpone planned tests to October. Noxafil is still needed.

Update as of October 31, 2011. Arisha and her mom came to St. Petersburg. Arina feels well and has no blasts. It was decided to perform haploidentical transplantation from her mom.

Update as of November 27, 2011. After numerous consultations with specialists from different clinics, it was decided to perform repeat transplantation from Arina's father, but with a different set of cells. Transplantation is planned for January. Arisha feels well. Although her blood counts are low, she is not yet receiving blood transfusions. She still needs Noxafil (a bottle for 25 days) and Exjade.

Update as of January 18, 2012. Arina is now at the day patient facility, the date of the transplantation has not been chosen yet. She is feeling ok. The girl still needs Noxafil.

Update as of February 22, 2012. Arina is being monitored as a day patient. From time to time she gets blood transfusions, as her transplant is still not completely functioning. Noxafil is still needed. Since she is stable, it was decided to postpone haploidentical transplantation and monitor her condition.

Update as of April 5, 2012. Arisha feels well. She needs blood transfusions once every two months on average.

Update as of July 10, 2012. Arisha feels well. She is followed as a day patient. She goes outside often and loves to run and dance.

Update as of August 28, 2012. Arina is feeling ok and monitored at the day care facility. The girl's blood counts are still low.

Update as of September 19, 2012. Arisha is doing well. She is seen at Gorbacheva Institute and periodically goes there for tests. Arisha plays outside a lot and loves to draw.

Update as of October 27, 2012. Arina is at the day patient facility having blood tests done every week. Her blood counts are still low, so the doctors do not allow the girl to go home. Arina's father came to see her. In November the girl is having an examination and a follow-up puncture. Noxafil is still needed.

Update as of November 28, 2012. Control tests were postponed to December. Arisha still has to go for regular blood tests, as unfortunately her blood counts stay low. She still needs Noxafil.

Update as of December 28, 2012. Arina is feeling fine. Her leukocyte and platelet counts are still low, but the hemoglobin level has been normal without blood transfusions for 5 months now. The follow-up examination hasn't been performed yet because there are no quotas for the hospital for the time being. The girl still needs Noxafil. The doctors did not allow Arina to go home for new year's, but she can find what to do in St. Petersburg too: she goes outside every day in spite of the cold weather, she loves playing, watching cartoons, drawing and making things out of play dough.

Update as of February 4, 2013. On the 19th of January Arina was hospitalized at City Children Hospital 1 with a high fever, where she received antibiotics and immunoglobulins. Now Arina is back at home, recovering from the viral respiratory infection. While she was ill, her blood counts dropped, but they are now increasing gradually. To prevent any new infections, Arina and her mom only come outside for a short while. Arina is continuing to take Noxafil to prevent infection.

Update as of March 5, 2013. Arina has recovered from her illness. She is observed at the day hospital and feels good. Blood counts are slightly below normal, but she does not need blood transfusions. Arisha is taking Noxafil, draws a lot, and goes out for a walk with pleasure.

Update as of May 6, 2013. Arina's condition is monitored at the day patient facility. The girl is feeling ok. Her blood counts are a little low but stable. Arina is administered Noxafil to prevent fungal infections. The girl is happy the weather got warmer and is spending time outside with her mother twice a day.

Update as of June 17, 2013. Arina is being followed as a day patient. Her platelet and leukocyte counts are steadily below the norm, but she feels rather well and is very active. Arina continues to take Noxafil for preventive purposes. Control examination is scheduled for July.
On June 1st Arina turned 4. She spent this day riding carousels at the "Magic Island" adventure park. Waiting for her at home were her loving granddad, the birthday cake and presents. Arina was especially enthusiastic about the microphone, as she loves singing.

Update as of July 22, 2013. Waiting for treatment quota took more time than expected. Arina's examinaton will start next week. She feels rather well and continues taking Noxafil for preventive purposes.
The Arkhangelsk Regional Administration has allocated Arina two boxes of the medication, which will last for two months. Arina is likely to receive Noxafil at place of her residence in the future.

Update as of September 2, 2013. The puncture performed on August 22 showed no changes in comparison to the last year result: Arina is still in remission, there are no blasts, but her blood counts are still low.
She is regularly monitored and feels fine. Noxafil for Arina is still provided by the Arkhangelsk Regional Administration.

Update as of February 5, 2016. In March 2014 Arina's brother Artem was born. He is a complete match for her as a donor. At birth, cord blood cells were collected, but for various reasons, transplantation was not done at the time. Artem is now almost 2, and the doctors from Gorbacheva Institute believe that his stem cells can now be harvested. Arina's bone marrow transplant was scheduled for February, and she is now being prepared for it.
Lately, Arina has grown and gotten stronger noticeably, but her blood counts are still low and she needs periodic blood transfusions.

Update as of March 10, 2016. Arina had developed a viral infection and therefore the bone marrow transplant from her little brother was postponed. She recently recovered and had a pre-transplant evaluation, but now she came down with another virus.
Once the virus has cleared, she will be ready for the transplant. Arina feels fine. She is so used to having low hemoglobin counts that she does not even notice it. She remains active and happy, reads with her mom and sings songs.

Update as of April 1, 2016. Arina's brother Artem is already in St. Petersburg. He and his sister are being evaluated before related bone marrow transplant. Most likely, Arina will be hospitalized at Gorbacheva Institute already next week. She will have pretransplant chemotherapy.
Both Arina and Artem feel well.

Update as of April 21, 2016. On April 19 Arina had a bone marrow transplant from her brother. Yesterday Artem was discharged, while Arina is facing a long recovery, which hopefully will end in full engraftment of the donor bone marrow.
After the chemo Arina lost her appetite. She is fussy and very picky, but otherwise feels fine.

Update as of May 12, 2016. Today is Arina's 23rd post-transplant day. Her blood counts started to increase, but she still needs platelet transfusions.
During recovery, Arina had an infection in her catheter and fever, as well as nosebleeds and some difficulty with digestions, but these issues are now under control.
Arisha lost a bit of weight, but overall she feels OK, and today she was allowed to go outside for the first time.
She continues prophylactic therapy with antifungal drugs (she was added Cancidas to Noxafil).

Update as of June 23, 2016. Arina has been under observation on an outpatient basis for the last two weeks. Her blood counts are not yet within the norm, but keep growing slowly but steadily. She doesn't have any symptoms of GVHD or infections. Arina takes walks, draws, and is feeling OK overall - about the same as before the transplant. She remains on a preventative dose of Noxafil.

Update as of July 11, 2016. Arina's blood counts are normal, only platelets still run low. In late July, on 100th day after bone marrow transplantation, she will do control spinal tap. She has no signs of GVHD. Arina receives Noxafil, Cellcept, antibiotics and antivirals. She feels well, goes for walks, and is generally active. At home Arina likes to watch cartoons, studies the letters, and prepares for school.

Update as of August 9, 2016. In July Arina was hospitalized at Gorbacheva Institute with a sore throat, accompanied by high fever. She spent two weeks in the hospital, and now she is back to the treatment at the day clinic.
Her temperature is now normal, she continues antibiotics and Noxafil. Puncture on day 100 after bone marrow transplantation has not been done, but judging by the results of the previous one, donor's bone marrow engrafted and successfully works (although recently her blood counts went down because of the infection). There are no signs of the GVHD.
Arina feels well, and she is active, she really wants to go to the amusement park, but she is not allowed to go to the public places by her doctors, so most of the time the girl plays at home and sometimes goes for a walk with her mother.

Update as of September 3, 2016. Recent puncture showed that the level of donor bone marrow engraftment is between 90% and 97%, therefore, Arina cannot go home yet. Doctors decided to monitor the dynamics. Her blood counts are within normal limits. She feels well, but she has not yet recovered fully after tonsillitis. Arina receives antibiotics and continues to take immunosuppressive medicine, as well as Noxafil, an antifungal agent.
Arina turned 7 this year, but she has not started school yet; her parents decided to postpone school to next year. For now, volunteers tutor her at home. She is not allowed to play with other children, so she spends her time mostly with her parents. However, to Arinas great joy, her doctors allowed her to visit Divo-Ostrov amusement park.

Update as of October 6, 2016. Arisha is still seen as a day patient. She receives antibiotic therapy due to an intestinal infection, which has been mostly taken under control.
Her blood counts are good, and a control biopsy was scheduled for the second half of October.
Arina feels rather well, and once a week she studies with a tutor to get ready for school. She does not like studying numbers and letters too much - she prefers playing and recess.

Update as of October 31, 2016. It has been six months since Arina underwent related bone marrow transplantation. Last week she had a control biopsy that showed no signs of disease. Donor's bone marrow engrafted and functions well.
She continues preventative therapy with anti-fungal drug Noxafil. Recently Arina had a viral infection, but she is feeling OK now. Arina is staying with her dad, as her mom left home to visit Artem, her little brother.

Update as of November 26, 2016. Arisha is seen as a day patient. She recently had a viral infection, but she feels OK now except for a bit of a runny nose.
CT of lungs was unremarkable, but since Arina still need to continue immunosuppressive therapy for a long time, at least a year after bone marrow transplant, she will also keep taking Noxafil for prophylaxis.
Arina is not yet allowed to go home to Arkhangelsk region, so she stays in St. Petersburg and studies with a tutor, goes for walks with her mom, and watches cartoons on her tablet with her mom's permission.

Update as of December 21, 2016. Arina is visiting the hospital during the day and feels well. The doctors were ready to let her go home for the holidays, but Arina's mother and Arina decided to stay in St. Petersburg for control of immunosuppressive drug dose in the blood. Her blood tests are norma, but unstable: sometimes higher, sometimes lower. She continues to take Noxafil for prophylaxis.
Although the weather is not very nice, Arina goes out for walks. The girl is preparing for the New Year's eve - she is going to decorate the Christmas tree and tries to decide what would she like as a Christmas present.

Update as of January 28, 2017. Arina is still seen at the day hospital; once a week she goes for blood tests - the results are stable. She feels well and doesn't get sick. Arina is now with her dad (her mom went home to see Arina's brother), and they go for walks and study with a tutor to get ready for school.
Arina is still receiving immunosuppressive drugs, but the doctors decided to cancel the antifungal drug Noxafil that she was taking preventively.

 

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