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Our son Denis Trufanov is 3.5 years old. For almost three years now, we have been trying to make him better. When Denis was just 9 months old, he was vaccinated according to a schedule, but his hemoglobin levels suddenly dropped. We were referred to the regional children's hospital in Krasnodar, where Denis received a transfusion of blood substitute. He had a severe allergic reaction to it and was taken to an intensive care unit. Then we were transferred to hematology unit of children's city hospital in Sochi, as the hospital in Krasnodar did not have pediatric hematology specialists.
In Sochi, the doctors found that Denis had cytomegalovirus and began anti-viral therapy. We spent five months at the hospital in Sochi, after which we were sent back to Krasnodar and then to our local hospital in a small town of Krylovskaya. Denis's condition had improved, and for some time he only took Carsil. However, he was not examined during that time and was not referred to the regional hospital for testing either.
After a year and a half from the onset of Denis's illness, everything repeated itself. Denis's hemoglobin and thrombocyte levels suddenly dropped, and we were referred to Krasnodar again, where Denis received anti-viral therapy for cytomegalovirus. However, the therapy was not effective. Then his doctors decided that Denis had aplastic anemia and began therapy with immunoglobulin and Granocyte, after which he started showing blasts in his blood. At that point, we were referred to Sochi again. At the hospital in Sochi, we stayed for six months, and during that time Denis's cells extracted during a puncture were sent to Moscow for testing. The conclusion was that Denis had myelodysplastic syndrome and needed bone marrow transplantation.
Only three months later, Denis's and his brother Vadim's blood was sent to BMT clinic in St. Petersburg for typing. The results of a successive puncture were sent to Moscow. The second response from Moscow was even worse than the first one. Denis was diagnosed with acute myeloblastic leukemia, M5. He needed high-dosage chemotherapy, which was not performed in Krasnodar.
After the consultation with Professor Ludmila Zubarovskaya who explained the specifics of a chemotherapy block and gave all necessary clarifications regarding its administration, Denis had high-dosage chemotherapy in Krasnodar. He had a terrible reaction to it; he had an anaphylactic shock from thrombocyte transfusion, bleedings and was in severe cytopenia for ten days. However, all the blasts disappeared right away. The results of typing showed that Denis's brother matched as his donor and we were referred for related transplantation at BMT clinic of Pavlov State Medical University.
We are now in St. Petersburg. Denis is undergoing examinations because his diagnosis is still being clarified. He will either have high-dosage chemotherapy or bone marrow transplantation. Either way, our family of four will need to spend several months in St. Petersburg. Denis's dad is looking for a job in St. Petersburg, and it should be easier for us financially once he finds it. But now, we still need help with paying for numerous tests, medications and apartment rent.
I used to work as a cleaner at the driving school in Krylovskaya, but I could only work from time to time, as I spent a lot of time with Denis at the hospitals. I now receive 1,000 rubles as sick pay, and soon I will stop receiving even that under the new law that limits such payments to 120 days a year. My husband worked as a mason before, and he just found a job at the furniture factory. We have enough money to pay for our living expenses, but not for apartment rent or medications.
We will be very grateful to everyone who responds!

Elena Trufanova.
Telephones:
+7 (964) 397-81-33 (Alexander, Denis's father)
+7 (960) 279-57-16 (Elena, Denis's mother)

Bill for the donor search in Germany
Medical Conclusion
Epicrisis

Update as of April 15, 2007. We would like to thank Marina Stukalova for financial help and Natasha for clothes and toys for Denis and his older brother.

Update as of April 25, 2007. Denis is still being examined. The decision regarding transplantation has not yet been made, and his diagnosis is not yet confirmed. Denis feels well.

Update as of May 7, 2007. Denis has still not been diagnosed, and the decision regarding the transplantation has not been made. Denis was recommended a liver biopsy. His family is still staying in St. Petersburg, and they need help with paying for apartment rent.

Update as of June 25, 2007. We are sincerely grateful to Kelly Services CIS for having a fundraising event for Denis. Thanks to the donations collected during the event on June 18th, he was able to pay his apartment rent on time. The company is continuing accepting donationd for Denis.

Update as of August 3, 2007. The doctors of BMT clinic asked AdVita fund for help with buying the following medications and equipment that will be necessary for Denis's transplantation:

- Caspofungin (Cancidas) – 20 bottles (for 16,000 rubles each)
- Voriconazole (Vfend) – 4 packages at 50 mg (for 7,000 rubles each)
- Valcyte – 1 package (for 70,000 rubles)
- Five systems for thrombocyte apheresis to prepare concentrate (for 10,250 rubles each)

Please help Denis's family! The transplantation is scheduled for September.

Denis needs the following medicines

Update as of August 27, 2007. During the scheduled examination it was discovered that Denis has blast cells in his blood, although only in single digits. Unfortunately, it is impossible to speed up his transplantation, as his older brother who will be Denis's donor was diagnosed with toxoplasmosis. He is now undergoing treatment. Denis's transplantation was rescheduled for mid-September.

Update as of September 4, 2007. Denis was hospitalized at BMT clinic to prepare for transplantation.

Update as of September 16, 2007. The transplantation was performed as scheduled. Denis is feeling relatively well. He needs help from blood donors with blood type I(-).

Update as of October 11, 2007. Denis is still in cytopenia. The engrafting of the bone marrow is going very slowly. His leukocytes are still at 0.7. Denis is constantly injected with Zovirax and Cancidas. He is in a relatively good condition, but still constantly needs help from blood donors with blood type I(-).

Update as of October 22, 2007. Denis's blood counts recovered and he was transferred to outpatient monitoring. Based on the test results, Denis's bone marrow has over 90% of donor's cells, which means engrafting is going well. He started showing the first signs of "graft versus host" disease.
The good news is that a threat of fungal sepsis is over and we no longer need to raise money for Cancidas for Denis! He and his family now only need help with buying current medications, and paying for tests and apartment rent in St. Petersburg, totaling 25,000 - 30,000 rubles a month.
The boy needs to be monitored by the doctors in St. Petersburg for at least three more months. Denis feels well!

Update as of December 17, 2007. Based on the test results, Denis has no signs of a relapse.

Update as of January 16, 2008. The additional testing discovered blasts in Denis's peripheral blood. His doctors are planning chemotherapy according to FLAG protocol.

Update as of January 21, 2008. Denis is on a break from chemotherapy. He does not feel very well, as he has high temperature and lack of appetite.

Update as of January 24, 2008. Denis underwent FLAG chemotherapy and he is now recovering. For now he is in cytopenia and has to receive transfusions of hemocomponents and Granocyte for stimulating blood cell production.
Denis takes Cancidas because his doctors suspect he may have aspergillosis, although the CT scan did now show any areas accumulating contrast agent. He may need PET scan in the near future.
Denis started to eat and even play.

Update as of February 19, 2008. Based on the results of testing after the chemotherapy, Denis is in remission. In the near future he will have another allogeneic transplantation from his brother.

Update as of March 10, 2008. Based on the latest test results, donated bone marrow engrafted and continues to produce blood cells. Instead of second transplantation, Denis will receive donated lymphocytes. Denis feels well.

Update as of April 7, 2008. Denis will receive at least two more lymphocyte injections from his brother according to the treatment plan. He feels well. Denis needs help with buying Heptral.

Update as of May 25, 2008. Denis receives a course of treatment with Roncoleukin, which should solidify the transplantation results. The control testing is scheduled for the end of June. Denis feels very well.

Update as of April 14, 2009 Screenings in a regional hospital revealed a relapse. Denis is expected at the Raisa Gorbacheva Institute of Pediatric Hematology and Transplantology.

Update as of April 27, 2009. Denis came to St. Petersburg for testing.

Update as of May 12, 2009. A decision was made to administer Denis a round of chemotherapy with Dacogen.

Update as of June 16, 2009. Denis's father is looking for any job. He could work in construction or as a loader. He is already registered in St. Petersburg. The family is in a difficult financial situation. Denis had a relapse, and his brother who will be a donor is now in St. Petersburg too. The family lacks money. Alexander, Denis's father, can be reached at phone number +7(964)397-81-33.

Update as of July 23, 2009. Denis achieved remission for his main illness, but, unfortunately, he has bone marrow insufficiency, which means there are too few stem cells for the proper functioning of the bone marrow. The possibility of infusion of a particular type of stem cells is under discussion. The boy feels well and he is monitored as an outpatient.

Update as of September 1, 2009. Denis underwent second stem cell transplantation from a donor and he is now recovering. He feels relatively well.

Update as of September 8, 2009. Denis is recovering after second transplantation. He had fever for some time, but feels better now and is in a better mood. Denis receives 200 mg of Vfend a day to prevent fungal infection. Elena, Denis's mom, is sincerely grateful to Anna Ustiyants for her invaluable help with buying school supplies for Vadik, Denis's brother and bone marrow donor.

Update as of October 2, 2009. Denis was allowed to go home. On Monday he will start Dacogen therapy that will be followed by donor's lymphocyte infusion.

Update as of October 8, 2009. Trufanov family is in a difficult financial situation. They lack money for living expenses and medication for Denis. Denis's father is looking for any job not requiring specialized education. He has registration in St. Petersburg. Please contact Alexander, Denis's father, at +7(964)397-81-33.

Update as of November 10, 2009. Denis completed the third round of chemotherapy. At the end of it, his blood counts plummeted and he got fever. Denis had t oreceive platelet transfusion. Gradually, the blood counts started rising, but he still had nausea, vomiting, fatigue and lack of appetite. Denis's doctor prescribed him hormonal therapy again. He was then discharged home. Denis's condition is much better - he is playing, doing his homework and is in a good mood. With the hormonal therapy and enzyme intake, his appetite has gotten better and he is no longer nauseous. In the next few days we plan to visit a hearing specialist for a checkup, as Denis's chemotherapy protocol may affect his hearing.

Update as of January 25, 2010. The control puncture results showed that Denis has blasts growth. He underwent chemotherapy under FLAG protocol. He is now at the clinic where he is recovering after the chemotherapy.

Update as of February 9, 2010. In the next few days Denis is planned to undergo immunotherapy with Roferon and Neostim.

Update as of March 3, 2010. Denis is in remission. The course of treatment with Roferon and Neostim will last two more months.

Update as of March 26, 2010. With immunosuppressive therapy, Denis's blasts percentage in his bone marrow increased. He was taken off immunosuppressive therapy and the blasts level normalized. The doctors plan for him to undergo donor's lymphocyte infusion.

Update as of August 11, 2010. A decision was made to initiate the unrelated donor search at the international registry. An invoice was requested.

Update as of September 22, 2010. After chemotherapy cycle, due to low leukocyte count Denis developed bacterial sepsis in his lungs. He was on oxygen for some time, and now feels better. He is planned to be moved out of intensive care unit. A control puncture is planned to evaluate results of treatment.

Update as of October 24, 2010. Denis has recovered after the chemotherapy course and has been transferred to the day patient facility. He is feeling a little better. He still has pains in the legs, so he can only get to hospital in a wheelchair. Due to Geptral the liver counts have improved. There is still no appetite, the blood counts are low (platelets 30, leukocytes 2, hemoglobin 80).
The boy's mother is also very concerned about all the difficulties her other son Vladik is having at school. He goes to the 8th grade and needs help from a volunteer teacher with Maths (especially Geometry), English and Russian.

Update as of November 14, 2010. Denis was found to have a lesion of destruction in his lung, most likely due to a fungal infection. Test results are not yet ready. Since the lesion developed during continuous therapy with Vfend, it was decided to replace Vfend by Noxafil. Please help! The medication is very expensive and costs close to 90,000 rubles per vial. It will last Denis 10 days.

Update as of November 24, 2010. Last week Denis suddenly started running a high fever (up to 39.7C). The fever was caused by the catheter infection and the catheter was removed. The fever went down. The blood counts had also dropped and biochemistry showed that ALT increased to 130. Now, due to the ongoing treatment, the blood counts are gradually normalizing. Noxafil is still needed.

Update as of December 22, 2010. We are sincerely grateful to St. Petersburg's City Bank for donation for the donor search for Denis Trufanov (the bank transferred 5,500 euros to S. Morsch registry). Thus, Denis needs to raise 4,500 euros for donor search and 2,500 euros for delivery of transplant.
We are sincerely grateful to International Center of Social and Humanitarian Initiatives for their help.

Update as of March 28, 2011. Denis is on maintenance therapy, with low doses of Purinethol and Cytozar as well as Noxafil as an antifungal drug. The latest examinations showed that Denis is in remission. The search for the donor continues. Denis is feeling fine. He has reading and maths classes with a teacher.

Update as of May 20, 2011. Denis is monitored as an outpatient. Based on control tests, platelet counts are a little lower normal. Conrol puncture did not confirm cytogenetic remission, but the blasts percentage is the same, within norm. Denis feels well. The search for the donor is continuing.

Update as of June 25, 2011. Denis is still at the day patient facility, he is administered maintenance chemotherapy (small doses of Purinethol and Cytozar). The boy is feeling fine. The donor has not been found yet.

Update as of July 7, 2011. Denis is being monitored at the day hospital. His blood counts are good and he does not need transfusions. Soon he will have a control puncture. Denis still needs Noxafil.

Update as of September 15, 2011. Denis feels well. Control puncture showed that blast level is within norm. He is still receiving maintenance chemotherapy. On September 1 Denis started 1st grade. We would like to thank Kelly Services for helping get Denis ready for school.

Update as of October 28, 2011. Denis had control tests. There are no signs of minimal residual disease and blast percentage is normal. He does not need blood transfusions. It was decided to continue chemotherapy under maintenance regimen. Noxafil is still needed.

Update as of November 12, 2011. Denis is continuing maintenance therapy. He feels well and enjoys lessons with a teacher. He can already read and write well. Noxafil is still needed.

Update as of January 24, 2012. Denis feels well and his blood counts are fine. However, he again shows signs of minimal residual disease. If there is a progression, a new therapy will be discussed. A matching donor was not found yet.

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