Dear friends,
My son Alesha Laptev is now 10 years old.
In March 2009 I noticed he had rashes and bruises
on his arms, legs and back. We went to a doctor. His
blood counts were bad, so Alesha was transferred to the
hematology unit of the Nizhny Novgorod Children's Regional
Hospital. After the boy was examined he was diagnosed with
aplastic anemia. This disease means that the bone marrow
stops producing the necessary blood cells.
Hospital has become our second home. My son's life had changed:
he could no longer spend the time with his friends as low leukocyte
counts made him susceptible to all kinds of infections. He could no
longer play football, ride his bike or skate – that is, do all the
things he loved to do when he was healthy. Even the smallest injuries
lead to hematomas, and because of low platelet counts there were
bleedings. Due to low hemoglobin counts Alesha would get tired even
when walking, let alone running.
He needed blood transfusions all the time. In order to get healthy
and live a normal life my son needed a bone marrow transplantation.
On October 28, 2011 Alesha had a bone marrow transplantation from a
non-relative donor found in Germany performed at the Raisa Gorbacheva
Institute of Children's Hematology and Transplantology. Now my son is
recovering, which is a difficult and lengthy process that requires lots
of physical and mental efforts as well as expensive drugs of course.
At present he needs Vfend to cope with a fungal infection in his lungs,
and one pack of Vfend costs 26,990 roubles. A pack only lasts for a week,
and Alesha has to take Vfend for 6 months at least. I cannot afford to buy
such an expensive drug. My husband died in August 2010, and I cannot work
because I am staying in hospital with my son. We live on Alesha's pension
allowance and the loss of breadwinner allowance.
Please help my son! Thank you very much for your support, kindness and compassion.
Update as of December 19, 2011.
Unfortunately, the transplant from a donor did not engraft.
On December 6th Alesha underwent a second bone marrow transplantation.
He is still in cytopenia. On December 20th Alesha will have a puncture
that will help evaluate transplantation results. Lesha feels relatively well.
His temperature is normal, but his blood pressure is high. He receives Vfend
and Ampholip to treat fungal infection in his lungs.
Update as of January 6, 2012.
Based on puncture results as of December 20th, donor's bone marrow
engrafted at 30-40%. On December 30th Alesha received donor's lymphocyte
infusion, and on January 3rd he had a control puncture, but results are
not ready yet. Blood counts are still very low:
leukocytes - 0.6; platelets - 6.
Lesha is on continuing blood component transfusions, and receives
antibiotics, antiviral drugs, Vfend, ampholip and Octagam. He feels
rather well, eats by himself and has no mucositis or fever.
Update as of January 12, 2012.
Based on control puncture, percentage of donor's bone marrow increased
somewhat, to 50%. Blood counts are low for now. Lesha feels rather well.
Update as of February 1, 2012.
Based on previous puncture results, donor's bone marrow percentage rose to 80%.
On January 30th he had a new puncture, results of which are not yet ready.
On January 31st Lesha underwent donor's lymphocyte infusion to stimulate
donor's transplant function.
At the same time, his blood counts are still very low. Lesha is continually
receiving blood transfusions.
He feels rather well, but barely eats, and his temperature rises in the evenings.
Based on control CT scan, new lesions appeared in his lungs, likely of fungal
nature. Lesha had repeat bronchoscopy (results are not yet ready), and Vfend
was temporarily replaced by Ampholip. Lesha also takes Octagam.
Update as of February 11, 2012.
Lesha was prescribed therapy with MabThera to stimulate donor's bone marrow
function (an injection every week). His blood counts are still low and he needs
continuing blood transfusions. Hemoglobin count is 80, platelets - 6, and WBC - 1.9.
Lesha also receives Ampholip, Tazocin, Leukostim and Albumin. He feels relatively well
and has no fever.
Update as of February 29, 2012.
This week Lesha is having the last injection of Mabthera, next week is
follow-up puncture. Based on its results the doctors will consider donor
lymphocytes transplantation. Lesha still needs blood transfusions because
the platelet and hemoglobin counts remain low. The boy is feeling ok
and eating well, his temperature is normal too. Based on CT results
Ampholip has been replaced with Noxafil.
Lesha is also administered antibiotics, antiviral drugs and Neupogen.
Update as of March 23, 2012.
Lesha had donor's lymphocyte infusion, but unfortunately,
transplant is still not functioning fully and Lesha depends on
blood transfusions and medications to stimulate bone marrow function.
The doctors are considering infusion of donor's stem cells (BUST).
Update as of April 10, 2012.
Lesha continues having under-functioning transplant
and has infectious complications. He is receiving combined therapy
with antibiotics and antifungal drugs. He also had a bleeding episode,
which was controlled with the help of Feiba medication.
We have not yet received a response from S. Morsch registry
regarding additional collection of donor's lymphocytes from
a donor for an infusion for Lesha.
Update as of April 25, 2012.
Lesha's transplant was rejected, but the donor agreed to the second
stem cell donation. Second transplantation is scheduled for May 12. Lesha
is in cytopenia. Infectious complications have been successfully treated.
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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