Invoice from DKMS

Update as of May 6, 2006.
Masha's tests showed that she is in remission after the second chemotherapy block. She has only 3.8% of blasts in her blood.
Next for her is the third chemotherapy block.

Update as of May 31, 2006.
DKMS, the largest German bone marrow donor registry located in Tubingen, Germany, expressed its willingness to assist Masha with his search for the donor. The search will be offered to her for free. The remaining cost of collecting bone marrow and related medical procedures is 9,720 euro (see more here).
Therefore, we now need to collect only 9,720 euro (plus 2,500 euro for delivery of transplant from the collection center to the patient’s room in St. Petersburg), and not the full 17,500 euro as originally planned.

Update as of June 23, 2006.
Due to hot weather, Masha does not feel very well. Her heart aches and her blood sugar rose. She is being diagnosed with steroid diabetes. We need to buy a blood sugar analyzer.

Update as of July 4, 2006.
An anonymous donor has paid for the search for the bone marrow donor and harvesting of bone marrow transplant.
Thank you very much for your help!
Now we only need to find the money to pay for delivery of transplant to St. Petersburg.

Update as of August 14, 2006. Masha was discharged from the hospital and she feels much better. However, she still needs to travel to St. Petersburg often for tests.
After the family car broke down, Masha and her mother now have to take a bus. Every trip costs them 1,500 rubles. Just recently, they also had to buy Cardioxan medication that cost 15,000 rubles.
Masha's family is out of money and they really need help.

Update as of September 15, 2006.
Masha was admitted to the bone marrow transplantation unit, and she is being examined. She will start chemotherapy a week after next. Masha needs help with paying for a catheter and several examinations.

Update as of September 22, 2006.
Masha's bone marrow transplantation is scheduled for October 5th.

Update as of September 26, 2006.
Masha will start pre-transplantation chemotherapy on Thursday. Two days ago, her temperature suddenly rose. Masha is now receiving antibiotics, although infection was not found. She also has no symptoms of colds, and her tests are normal. For the last two days, she was taken off the catheter, to see whether it was a reaction to that.

Update as of September 27, 2006.
Masha will need donated blood of group II (-). Please contact Masha's mother, Lubov Ruslanovna at 8-921-550-99-81. The donors are already asked to donate their blood.

Update as of October 4, 2006.
Masha is in her last chemotherapy days before the bone marrow transplant. Masha's mother asked our Fund to help her find a small apartment for rent near the hospital. Masha's family lives a five-hour drive away from St. Petersburg and they do not know anyone in the city. It means that they have no place to cook, no place to wash (the sterile regime calls for daily washing) and no place to bring Masha after she receives transplant and her leukocytes rise. For three months after the operation Masha will have to be observed by the doctors. We will be very grateful for help with finding an apartment and helping to pay for rent.
The necessary condition is that apartment has to be fungi and mold-free. If someone could help Masha's family address their daily requirements while they are looking for an apartment, it will be greatly appreciated.
Masha still needs donated blood, group I (-) and II (-).

Update as of October 10, 2006. Masha is in her 4th post-transplant day. She has fever, but she is in a satisfactory condition otherwise. Masha is given antibiotics.
She is still very much in need of donated blood (groups I (-) and II (-)). Also, her family needs help with finding an apartment for rent in St. Petersburg.

Update as of October 12, 2006.
Masha is in a stable condition. She is in a deep cytopenia and her blood counts are very low. She still needs donated blood.
Masha's parents were able to rent a one-room apartment near the clinic. Thank you for supporting Masha and her family!

Update as of October 24, 2006.
Masha's grafted bone marrow is slowly growing and producing new cells. The tests show that almost 30% of the cells come from the donated stem cells.
The leukocytes and thrombocytes are growing well, and Masha is not showing any signs of GVHD. However, Masha's mucous tissues are still damaged; she is nauseous and has a fever of uncertain nature.
Yesterday Masha was short of breath. Her tests showed that she has low oxygen levels in her blood, which was possibly due to a reaction to Cyclosporine. The computer tomogram showed clear lungs, and Masha had a normal cardiogram.
Masha needs help with paying for the various tests. In addition, once Masha is discharged, she will need an air ionizer with a special filter for fungi and viruses that allows maintaining a sterile regime in home conditions. The cost of the air ionizer is approximately 23,000 rubles.

Update as of October 30, 2006. Masha was allowed to go home for the weekend for the first time since the transplantation. She will spend this time with her mom at the rented apartment. Masha feels relatively well.

Update as of October 31, 2006. Masha started showing the first signs of skin GVHD. She has high temperature and severe stomatitis.

Update as of November 10, 2006. Masha feels relatively well. After hormonal therapy, the symptoms of skin GVHD are practically gone. However, she still has high blood sugar.

Update as of November 21, 2006. Masha was discharged from the clinic, and she is now visiting transplantologists as an outpatient. She lives with her mom at the rented apartment near clinic. She feels relatively well, although she still has a problem with high blood sugar.
Masha and her mom need help with paying for the apartment rent, as Masha's doctors are not yet letting her return home, in Podprozhsky region, due to her unstable health.

Update as of November 24, 2006. Masha is having shortness of breath. Although her lungs are clear based on the examination results, she tested positive for cytomegalovirus.
Masha has to go to the clinic for IV injections twice a day. Her skin GVHD symptoms flare up, and go away intermittently.
Her blood sugar had stabilized, and masha is taken off insulin. Masha’s family still needs help with paying for the apartment rental.

Update as of November 28, 2006. Masha still has high temperature. Her doctors think that she may have a viral infection. Masha was given additional antibiotics.

Update as of December 18, 2006. Masha overcame her infection, and she now feels well. Her temperature and nausea are gone. She suddenly had an increase in transaminase levels, and she is being tested for the possible reasons for that.
The representative of the company that paid for Masha's transplant and supported her during the difficult recovery time visited Masha, wished her a happy New Year and gave her wonderful gifts.
Masha and her mom are sincerely grateful to their supporters for their attention and constant support!

Update as of February 8, 2007. Masha needs help with buying antifungals drug Diflucan. She needs to spend 350-400 rubles a day for two months on this medication. The drug is necessary to prevent fungal complications after the transplantation.
Masha feels well, except for periodically rising blood sugar.

Update as of February 11, 2007. We are very grateful to Masha's supporters who continue to monitor her condition and agreed to pay for Diflucan therapy in full. Thank you very much!

Update as of May 3, 2007.. After she was taken off hormonal therapy, Masha's GVHD symptoms worsened. She will be hospitalized at the Children's hospital No.1 where she will be monitored and take another course of hormonal therapy.
Masha will need Insulin and tests for determining sugar levels in her blood. In the next few days, we will know the other medications needed by Masha.

Update as of June 19, 2007.. Since May 4, Masha has been admitted to the Children's Hospital No.1 with a diagnosis of GVHD (graft vs. host disease) and damage to her mucous tissues. For two weeks, from May 4 until May 18, she received high doses of Methylprednisolone, and then her doctors began to reduce the doses of the hormones every two days. However, once the hormone doses were decreased, Masha's GVHD worsened and she developed more damage to mucous tissues, diarrhea, high temperature, overall fatigue and lost her appetite.
For a week, she was prescribed full dose of Methylprednisolone again, with a gradual reduction of the dosage. The specialists of BMT clinic at the State Medical University recommended her to take 1 capsule of Budenofalk two times a day.
Masha started experiencing problems with her legs. She does not walk very well, and if she sits down, she cannot get up. Masha began feeling pains in her knees and started swelling in her ankle joints.
Based on the neuropathologist's recommendation Masha received Actovegin intravenously, as well as Cerebrolysin, and she has been taking Espa-lipon for over a month.
On June 5, Masha was found to have cytomegalovirus, and she had to start taking Valcyte as well.
When Masha took hormones previously, she had developed signs of steroid diabetes. This time, however, the complications are even more serious. On June 15th and June 16th her sugar levels rose to 19.6, and based on the endocrinologist's recommendation she was prescribed insulin therapy with Protoran (long-term effect) and Actrapid (sort-term effect) and a restricted diet.
Masha needs to control her sugar levels before and after she eats, and she uses a lot of test strips and lancets.
Masha was also recommended nutritional supplement Nutricomp Diabetes, a can of which lasts her 5 days, and we have to buy it in our own.
We also have to buy mouth wash, as her tissues are still healing, and many others, such as Amphotericin B, ascorbic acid, B12 vitamins, Tantum verde, Miramistin, Propolis, Malamit and others.

Update as of June 28, 2007. Masha's condition stabilized and she was discharged home. However, she is still showing high viral loads of cytomegalovirus and high blood sugar. In the next few days, Masha will need Valcyte. It is not available under free medication program. The cost of a package (60 pills) that will last 2 months is 70,000 rubles.

Update as of September 4, 2007. Masha was hospitalized at the Children's hospital No.1 for examination. She has a paresis of her facial nerve. The MRI scan results did not show any areas of concern in her brain.

Update as of September 15, 2007. From May 3, 2007 to June 28, 2007 Masha received treatment for GVHD (graft versus host disease). On June 28th she was discharged home. At the end of July, we came to the consultation to Pavlov Institute and Masha was tested. Everything was well. On July 12 Masha suddenly developed neuritis of her left facial nerve. It was accompanied by severe headaches and spasms of the left side of her face.
The doctors of State Medical University recommended us treatment with neuropathologist. The therapy seemed to have positive results, but at the end of August Masha started having problems with her left eye and developed exotropic strabismus.
We came back to State Medical University, and we were offered to be admitted for examination. Since September 3 Masha has been at the hospital. She had many tests: brain MRI, which did not confirm neuroleukemia, an x-ray with a contrast agent, which showed that Masha's lymph nodes were normal, an ultrasound of her heart, which did not show any pathology and an examination by an ophthalmologist, which also did not find anything wrong.
Masha was also tested for fungal and viral infections. She was found to have Epstein-Barr virus, but Masha's doctors said that she would not have vision problems as a result of this infection. Masha did not test positive to CMV.
Meanwhile, Masha's eye closed up. We were offered examination at MAPO clinic. The further testing showed Masha had antigens of aspergillosis in her spinal fluid and blood. The doctors of Children's hospital No.1 will determine the treatment protocol in coordination with Mycology Institute.
The treatment will be lengthy and expensive. However, Masha's doctors believe that even aspergillosis could not have caused her eye to close.

Update as of October 24, 2007. Masha feels much better. Her eye opened and her vision is recovering. Since the source of the infection was never found, the assumption is that she had a viral infection and the improvement is the result of antiviral therapy.
Masha was discharged home. We are sincerely grateful to Masha's long-term supporters who enabled her to have all the necessary testing and get needed medications.

Update as of February 18, 2008. Masha was admitted for a scheduled examination at BMT clinic. She is suspected of having lung GVHD.

Update as of March 25, 2008. Masha was hospitalized again. Her lungs' condition worsened and it is being verified whether the problem is due to an infection or GVHD. We are sincerely grateful to Masha's constant donors for their invaluable help!

Update as of March 26, 2008. Masha developed pneumothorax after the bronchoscopy. She was transferred to oxygen in a sterile zone until the next morning when her condition will be monitored closely. She was tested for fungal and hidden infections today, as her lungs' function fell from 34% to 28%. The doctors are trying to determine the reason for that. Masha's skin GVHD worsened as well.

Update as of March 29, 2008. Masha was taken off drainage system and she is in a satisfactory condition. Her doctors are waiting for the test results for fungal and hidden infection. The last results are expected on April 4th.

Update as of April 18, 2008. Masha's chronic GVHD is progressing. Her situation is being discussed with a clinic in Hamburg.

Update as of May 25, 2008. A decision was made to refer Masha for treatment of chronic lung GVHD at University clinic in Hamburg. We are sincerely grateful to Masha's loyal supporters for readiness to cover her hospital bills. At this time we received a price estimate, and the final bill will be prepared after a second consultation with Professor Zander. Masha is in a stable condition.

Update as of July 28, 2008. Masha's hepatitis worsened, so a course of immunosuppressive therapy was delayed. She needs to take Heptral for a long time. The first month will require 800 mg a day (a package that costs 1,500 rubles lasts her 10 days). Afterwards she will need 400 mg a day.

Update as of October 31, 2008. Masha was hospitalized at State Medical University due to colic. During the operation, an ovarian cyst was removed and sent for histology testing.

Update as of March 6, 2009. The histology testing discovered relapse outside of bone marrow. Masha was hospitalized at BMY clinic for testing.

Update as of April 15, 2009 Masha is going through an anti-relapse FLAG course. The girl has a high fever. She is to get 400 mg of Vfend per day to prevent aspergillosis.

Update as of April 26, 2009. Masha recovered after a block of chemotherapy and control testing shows no traces of tumor. The doctors are discussing the possibility of administering the second round of FLAG therapy. Masha still needs Vfend.

Update as of May 29, 2009. Masha will be infused with NK-cells that are released from the donor's lymphocytes using special equipment. Therefore, we need to raise these amounts for Masha's treatment:

- 1,500 Euros for collection of donor's lymphocytes,
- 2,500 Euros for urgent delivery of lymphocytes (they live no longer than 24 hours), and
- 350,000 rubles for special equipment for release of NK-cells that will be infused.

The bill for the equipment should arrive next week.

Update as of July 03, 2009. Bill for special equipment for release of NK-cells
Invoice from Germany for donor's lymphocyte collection

Update as of July 8, 2009. Masha suffers from severe pain in her legs, and it is only helped by epidural anesthesia. The doctors are discussing possibility of administering a course of chemotherapy to her.

Update as of July 22, 2009. Masha received a round of chemotherapy and infusion of NK-cells. She is now in a deep cytopenia. Masha still suffers from pains and receives epidural anesthesia.

Update as of August 20, 2009. Masha was diagnosed with leukemia with neurological complications. She will need injections of Cytosar in her spinal liquid. She does not feel very well due to pains and bad coordination in her leg. Masha urgently needs Vfend, as CT scan showed presence of aspergillosis infection.
Masha's mom is thanking their long-term supporters for allowing them stay in an apartment and their continuing help.

Update as of September 1, 2009. Masha is undergoing a cycle of punctures with Cytosar. The cytosis declined several times after the initial injection, which means Masha responded well to therapy. However, due to a serious mucositis, she cannot take Vfend in capsules and urgently needs intravenous Vfend (2 bottles a day).

Update as of September 8, 2009. Masha feels better. Her mucositis is going away, and she is now able to take Vfend in capsules. Her control CT scan is scheduled for September 10th.

Update as of September 25, 2009. Masha completed a first block of therapy with Atriance and she is now recovering. Masha's mom is thanking everyone who participated in buying the medication.

Update as of October 26, 2009. Our family would like to express our enormous gratitude to the doctors of the clinic for their sensitivity and understanding in at times difficult situations.
Masha is undergoing treatment since December 2002, for seven years already. This is a very long time. Masha is very tired and reacts very negatively to new treatment approaches. But our doctors are able to find a way to treat Masha even in those situations, for which we are very grateful.
We would also like to thank Advita fund volunteers for all that they do for our daughter. For finding and delivering expensive medications to us, looking for donors and continuing help and support. We are deeply grateful to Masha's supporters who have been paying for her treatment. For the third year now they are helping her with medications and paying for costly tests. We know that without such people who are ready to support someone else's child, we would not be able to afford to treat Masha. These people don't just help financially. They care for our daughter and call us to ask how she is doing. They share our happiness when things go well, and our worries when something goes wrong. This emotional support is so powerful that even when it feels that we have no more strength left to go on, we are able to mobilize and keep fighting.
We have no words to express how grateful we are to all the people who are helping us. I just want to thank them for being there.
Lyubov Ruslanovna, Masha's mom

Update as of January 21, 2010. Based on PET results, Masha has a lesion accumulating contrast. She is planned for hospitalization at BMT clinic for a course of therapy with Atriance.

Update as of January 29, 2010. Masha was hospitalized at State Medical University for Atriance injection. After this course, she is planned to go for PET imaging, and based on its results, further treatment will be offered. As of now, 4-6 courses of Atriance are planned.

Update as of March 7, 2010. Masha is recovering after another cycle of Atriance, which she has a very hard time tolerating. Masha has no appetite and does not eat anything. She feels unwell, but for now none of the clinics around the world offered an alternative to Atriance. The consultations regarding further treatment are continuing.

Update as of April 16, 2010. After lengthy consultations with experts in Europe and the US, it was decided that Masha will undergo haploidentical transplantation from her mother. Masha's mom is now being examined as a potential donor. The transplantation will require special cylinders for cleaning of the donor's transplant that cost 508,476 rubles. We will receive the invoice shortly.

Update as of April 30, 2010. Masha is undergoing a course of chemotherapy prior to haploidentical transplantation. Based on the typing results, Masha’s father will be her donor. The equipment for the transplantation was provided based on a guarantee letter from our fund and it has not been paid for yet.

Other Masha's photos