Hello!
My name is Svetlana Nechaeva, and my only son's name is Ivan. We are from
Kemerovo region. Vanya got sick in November of last year, when he was 17. He
was studying at the 11th grade, which he did not finish due to his illness.
Vanya was diagnosed with acute lymphoblastic leukemia. He was started on
high-dosage chemotherapy in Novokuznetsk. During treatment, my son lost weight
to 48 kg. He did not get up from the bed for 42 days and then he had to learn
to walk and eat again. The treatment continued until July.
After Vanya achieved remission, in March his doctors forwarded his documents to
St. Petersburg and we were invited for a consultation at R. Gorbacheva Institute
of Pediatric Hematology and Transplantology. It was decided to offer Vanya bone
marrow transplantation and a matching donor was found at the international registry.
However, transplantation was performed only 4 months later, on August 14th, as
Vanya had a relapse and had to undergo chemotherapy. Vanya is now receiving many
antibiotics and need expensive medications (antifungal drug Vfend and others).
No one knows how much more money we will need for the medications, lodging and
flights. My husband works, but I had to leave my job to care for Vanya. I am very
thankful to everyone whose hearts ached for us and who helped us. They are our
town residents, students of Bolshe-Taldinskaya and Terentievskaya schools, and
workers of Taldinsky coal mine. We are hoping that in the future people will
help us too.
Update as of September 25, 2009.
Ivan underwent transplantation as scheduled and was discharged for outpatient
monitoring. He feels relatively well, except for skin GVHD symptoms. Ivan
needs Vfend at 400 mg a day to fight fungal infection in his lungs.
Update as of October 26, 2009.
The doctors took aspergillosis under control, and Vfend was replaced by
Mycosyst. Ivan feels well.
Update as of December 9, 2009.
It is 117th day after transplant. For a month we stayed on treatment at
the clinic due to stage III skin GVHD. Ivan has temperature to 37.8C, and
his blood counts do not rise to the normal levels.
In two weeks, Vanya is planned to have donor's lymphocyte infusion.
He takes Dasatinib and still needs Vfend.
Vanya is now an outpatient and he receives Cymevene.
Vanya's mom
Update as of January 12, 2010.
Vanya was taken to intensive care unit with downturn in his condition:
low blood pressure and fever. His condition is becoming more stable.
Update as of January 27, 2010.
Ivan is at the clinic where he receives therapy for skin GVHD.
Update as of February 4, 2010.
Ivan is at the intensive care unit due to worsening of intestinal GVHD.
He was put on enteral nutrition, Intestamine, which has to be purchased.
Update as of February 9, 2010.
Ivan is still in intensive care with stage IV GVHD, but he is now stable.
Ivan urgently needs Albumin and enteral nutrition Intestamine.
Update as of February 20, 2010.
There are fewer signs of GVH reaction but Ivan is still in intensive care
due to a grave form of undernourishment. Ivan needs enteral and intravenous
nutrition. We need help with buying Intestamine, Modulen, Lipofundine,
Omegaven.
Update as of March 7, 2010.
Although Ivan is still in intensive care, his condition is stable
enough that soon he will be transferred to the unit.
Update as of March 23, 2010.
Ivan's condition had improved. He no longer needs Intestamine and was put
on a special diet. He started gaining weight little by little.
Update as of April 3, 2010.
Ivan's condition in regards to GVHD stabilized, but he got a
viral infection and was started on antiviral therapy.
Update as of April 30, 2010.
Ivan continues antiviral therapy and takes Albumin.
He is still seriously fatigued.
Update as of May 26, 2010.
For a long time Vanya has been losing protein. His kidneys
are not working well, so he receives Albumin injections in
large doses. He has difficulty walking due to swelling.
Vanya constantly needs Albumin, enteral nutrition and Modulen.
Vanya is in a very difficult condition.
Update as of July 14, 2010.
Vanya is in remission and GVHD was taken under control as well.
However, his kidneys are not functioning well still, and he needs
to take Albumin regularly. Also, due to atrophy of leg muscles,
Vanya can barely walk.
Update as of July 27, 2010.
Ivan is on treatment at the clinic. He has had high temperature
for four days. He feels weak in his legs and cannot walk. Ivan
does not eat well and has no appetite.
Ivan's mom
Update as of August 17, 2010.
Ivan is treated as a day patient. His test results are good.
He has residual skin GVHD and the doctors are planning photopheresis.
Ivan's mother
Update as of September 10, 2010.
Ivan feels rather well, but he is still on immunosuppressive medications and Vfend.
Next week he will be allowed to go home. Control tests are scheduled for next month.
Update as of November 14, 2010.
Vanya came for control tests in St. Petersburg.
He can move around without a wheelchair. He still takes Vfend,
Tacrolimus and Gleevec.
Ivan's mom
Update as of December 9, 2010.
Vania finished testing and went home. The next round of test
is scheduled for the next month. Blood counts are normal.
Fungal infection is not found. Vfend dosage is reduced
to 200 mg/day. Vania feels good.
Update as of December 24, 2010.
By the end of the year Vanya should be completely taken off
Tacrolimus but would still take Glivek. The tests are planned
for January. He still needs Vfend.
Update as of February 17, 2011.
Vanechka is doing well, he is in remission. Test results are good, he
just has mild skin GVHD. The next course of photopheresis is scheduled for April.
Ivan's mom
Update as of May 29, 2011.
Ivan is coming for a follow-up examination in mid-June.
He is feeling great!
Vanya's mother
Update as of June 11, 2011.
Vanya came for control tests. Complete remission was confirmed.
He has no infections or GVHD. Vanya feels well and looks great.
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703840712001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT: RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT: RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Bank of New York Mellon,
New York, USA
SWIFT: IRVT US 3N Correspondent Account No:
8901003069
Correspondent Bank #2:
JP Morgan Chase Bank,
New York, USA
SWIFT: CHAS US 33 Correspondent Account No:
822839205
*,**
Beneficiary:
Non-Profit Organization
"AdVita Charitable Foundation"
acc. 40703978312001000468 Beneficiary Bank:
JSC Bank Otkritie, Moscow
SWIFT RUDL RU MM
For Petrovskiy branch,
St.Petersburg
SWIFT RUDL RU M1PET Adress of Beneficiary Bank:
191186, Saint-Petersburg Russia,
Nevsky pr. 26
Correspondent Bank #1:
Deutsche Bank AG,
SWIFT: DEUT DE FF Correspondent Account No:
9477134
Correspondent Bank #2:
Commerzbank AG,
Frankfurt am Main, Germany
SWIFT: COBA DE FF Correspondent Account No:
400886482900
*,**
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