No age is good for falling ill, but sometimes the circumstances are
stronger than our will. My name is Mikhail. My nearest future will
involve long, difficult and expensive treatment. When people hear
about my diagnosis, chronic myeloid leukemia, they think I'll die
soon - after all, it's cancer! But I have a good answer: I do
have cancer, and it started more than a year or two ago, but I
am not going to die any time soon.
The treatment is difficult, no doubt. Chemo, then bone marrow
transplantation, and then, with some luck, recovery. But in my case,
the time after the transplantation was the most difficult. I was
bed-ridden for months and couldn't walk, then there was a seizure and
I ended up at the intensive care unit. I spent days between life and
death. I don't know how and why, but I did it. I am here, and I am alive.
But I had to pay a lot for that. Just imagine: I was in hospital and couldn't
even look out of the window, because I couldn't stand up, my legs didn't
support me. My world was reduced to a small hospital ward. At the
same time my classmates and friends graduated from school, fell in
love, and looked forward to the graduation ball. There was spring outside,
but I could see the change of seasons only on the TV screen.
Summer came, and at last I could stand up and then go home. Treatment
was to be continued at home, but still – home is home, and it was a chance
to start everything anew. To change my life somehow. After all, if I survived,
surely it was for a reason.
But I had only two months of normal life. It turned out that my treatment was
not yet over. I had graft versus host disease, a complication of bone marrow
transplantation, which affected my skin. It wouldn't be so bad if it were not
so severe, affecting the internal organs. And again hormones and
immunosuppressants. Everything started all over again.
And then the new stage: St. Petersburg, an unfamiliar hospital with
unfamiliar rules, and no friends at my side. The treatment, as we were told,
will last a long time.
If I get the treatment recommended by the physicians, the graft vs. host
disease will disappear and I will again start a new life. I will have several
courses of photopheresis, which cost a lot. I am 18, and I have lost so much
time! Graduation ball, birthday parties, camping and tourist trips – I have
missed all of these. But I hope that something exciting and new is yet to
happen after the treatment: college tests, school breaks, travel... I am sure
that I will also meet my true love somewhere. It will be real life, like any of
yours. But so far I only dream of this life, while lying on my hospital bed.
Update as of April 1, 2011.
Mikhail should undergo at least 12 photopheresis procedures.
For each procedure, the following supplies are required: Spectra
stem cell collection set (12,960 roubles), blood component photopheresis
sets (16,960 roubles) и 3 ACD-A containers (750 roubles each).
Update as of May 20, 2011.
Misha completed photopheresis and was discharged for monitoring locally.
He still has GVHD symptoms, but he no longer needs hormonal therapy.
Control tests are scheduled for June.
Update as of July 27, 2011.
Misha came in for another cycle of photopheresis. All went well,
and the next session is scheduled for the end of August.
The therapy is successful and there is improvement.
Update as of November 12, 2011.
Misha came to St. Petersburg for another course of photopheresis.
He feels well. The therapy is proceeding as planned.
Update as of November 22, 2011.
Misha completed planned photopheresis course. He feels pretty well
and takes Gleevec and Cellcept. The next photopheresis session and CT
scan are scheduled next month.
Update as of March 1, 2012.
Misha comes for photopheresis therapy once a month. He is stable.
In addition, Misha receives tacrolimus and Gleevec.
He feels rather well.
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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