Lesha died on December 24, 2011

Another Alesha's photo

Hello!
My name is Anna, my son Alexei is 5 years old. Im December 2007 trouble came to our family. When Alexei was 2 he was diagnosed with acute lymphoblastic leukemia.
For nine months he was administered chemotherapy, then he was on maintenance chemotherapy for another 15 months. It seemed that the disease was in the past and everything was going to be all right. But two months later my son had a relapse. Since June 2009 we've gone through 3 high dose chemotherapy blocks and were discharged from hospital for 2 weeks (with a remission and good blood counts). Then we were sent to Ekaterinburg. Alexei was examined there and it turned out he had a second early combined relapse. He was administered another six high dose chemotherapy blocks, including FLAG. Only after the final block was remission achieved.
On April 6, 2010 we were invited to the Raisa Gorbacheva Institute of Children's Hematology and Transplantology in St. Petersburg for a personal consultation. It was there that the doctors decided to perform a haploidentical bone marrow transplantation.
I do not work today (due to staff reduction). My husband is the only wage earner in the family. We found ourselves in a very difficult financial situation. We need help to be able to pay for examinations, buy drugs (Intraglobin, one bottle costs 12,000 roubles; Vfend, 30,000 per pack; Albumin, 1,700 roubles per bottle), and rent a flat. We cannot cope on our own.
We do hope for your help. Thank you all so much in advance and God bless you!

Respectfully,
Anna Nesterenko

Medical conclusion:
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Update as of May 27, 2010. Transplantation took place on schedule. Right now is the most difficult period: Lesha has cytopenia, mucositis and fever. He needs intravenous Vfend and Intraglobin.

Update as of June 22, 2010. Alesha's blood counts are rising very slowly after the transplant, and only now their growth is no longer stimulated with Neupogen: leukocytes are up to 2,000, platelets - 37,000, and hemoglobin - 86. Lesha started feeling better. He has skin GVHD, but it is under control. Of the expensive drugs, we need Vfend, one package a week.
Lesha's mom

Update as of August 2, 2010. Lesha is feeling OK. He is now monitored as an outpatient. His skin GVHD is now stable, but we continue going to photopheresis therapy. The last puncture results showed chimerism of 90-95%. The CBC results are: leukocytes - 4.1, hemoglobin - 100, platelets - 45.
Lesha's mom

Update as of September 22, 2010. Alesha is in a stable condition. He receives therapy for encephalopathy, takes Cortisone (due to adrenal gland dysfunction) and Vfend. MRI is planned for September 29th to evaluate treatment effect.

Update as of March 28, 2011. Alexei is feeling better, he spent some time in hospital but is not back in day care. The photopheresis course is continuing, and he still needs Vfend too.

Update as of May 25, 2011. Lesha was urgently hospitalized at intensive care unit of R. Gorbacheva Pediatric Hematology & Transplantology Institute due to problems with breathing. Based on CT scan, he has severe combined pneumonia. Tests have shown penumocystosis infection. Mycotic tests results are not yet ready. Alesha was prescribed therapy with Noxafil, Ampholip and Zyvox.

Update as of June 2, 2011. Alesha feels better and he was transferred from intensive care unit to the ward. For now, it is not yet clear whether he has pleural GVHD or an infection. Alesha needs Ampholip and Noxafil medications. Vfend was canceled, as his condition worsened during therapy with it.

Update as of June 25, 2011. Alexei is doing better and has been discharged to the day patient facility. There are some improvements in terms of aspergillosis too so Ampholip has been canceled, but Noxafil is still needed. There remain signs of a skin GVH reaction, so Alexei is administered hormones and continuing with photopheresis.

Update as of July 7, 2011. Based on control puncture, Alesha is in complete remission. He is also improving in regards to aspergillosis in lungs and GVHD. The doctors started gradually reducing hormonal therapy doses, and additional photopheresis cycles are being considered. He still needs Noxafil. Alesha feels rather well.

Update as of August 9, 2011. Alesha is at the hospital again. He had worsening of infection in his lungs and he shows signs of GVHD of lungs. He receives appropriate therapy.

Update as of September 9, 2011. Lesha's infections are under control, but he still has signs of GVHD of lungs, mouth and liver. He receives Cellcept and sirolimus and continues photopheresis.

Update as of September 21, 2011. Lesha continues photopheresis treatment. Manifestations of intestinal and liver GVHD remain, although lung CT showed improvement. Noxafil is still required. Results of general blood analysis are stable.
Lesha's mom

Update as of October 28, 2011. Lesha still suffers from chronic GVHD of skin, mouth and liver. His skin's condition worsened and requires constant therapy in the hospital under anesthesia. Photopheresis was temporarily stopped.

Update as of November 10, 2011. Lesha's GVHD affecting liver worsened and bilirubin level grew to 200. Skin GVHD is also severe. Lesha is in ICU where he receives antibiotics and hormonal therapy.

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