Hello,
I am Roma Aseev's mom. Four years ago, my son was diagnosed with
acute lymphblastic leukemia. He started lengthy and harsh therapy.
At the age of just 6, Romashka tolerated all procedures stoically,
like a real man. And when the 2-year-long treatment was coming
to an end, Roma was in remission and felt well, and we had another
happy occasion - Roma got a baby brother, Artem, - a relapse occurred.
The relapse was very serious, with involvement of central nervous system.
Roma was invited for a consultation at R. Gorbacheva Pediatric Hematology &
Transplantation Institute. At the international donor registry, there
were no matching donors for Roma. At first, he underwent autologous
transplantation, and when it failed, it was decided to refer Roma for
haploidentical transplantation from his father, although they match only 50%.
There were no other options. Roma is now in St. Petersburg where he is
undergoing high dose chemotherapy at the clinic. The doctors are trying
to help him achieve remission. As it often happens, due to chemotherapy
Roma's immune system suffered and he developed fungal
pneumonia (aspergillosis).
Roman now needs Vfend therapy. One pack of Vfend costs 27,000 rubles
and lasts a week. We don't have this much money - by far. Please help our son!
Transplantation is already scheduled for August 11th. And this is the only
chance our son has.
We will be very grateful to everyone who responds!
Update as of September 9, 2011.
Roma is being monitored at the day hospital. He is in remission based
on control puncture. He has slight skin GVHD. Roma receives
immunosuppressive drugs and Vfend.
Update as of September 22, 2011.
Roma was hospitalized to the clinic due to stomachaches. It is
suspected to be related to intestinal GVHD. In the next few days
he should have test results ready that will help determine whether
this is due to GVHD or an infection. Roma is fatigued, eats very
little, and lost weight. He will be receiving intravenous nutrition.
Roma also has signs of hemorrhagic cystitis. His skin GVHD is
improving. Roma is now receiving hormonal therapy, but Vfend in
capsules needs to be replaced by intravenous form.
Update as of September 26, 2011.
All the test results for infection are negative, while intestinal
and stomach GVHD is confirmed. Roma receives appropriate therapy.
He is now in a hospital but feels a bit better. He is stable and
does not have hemorrhagic cystitis.
Update as of October 20, 2011.
Due to immunosuppression drugs Roma lost consciousness and was transferred
to intensive care, some of the drugs were canceled. Now his condition
is stable again, and the boy has been transferred back to the ward.
The situation with the GVH reactions is getting stable too: thanks
to the photopheresis the signs of a skin GVH reaction have disappeared,
and thanks to Campath and Cellsept signs of the stomach and intestinal
GVH reaction are almost gone too, and Roma was allowed to eat regular food.
Roma is feeling ok but is very weak. The boy needs Cellsept,
Entocort and intravenous Vfend all the time.
Update as of October 28, 2011.
Roma has improvement with intestinal GVHD. It was decided to take a
break with photopheresis sessions. Hormonal doses are being gradually
reduced. Roma feels much better.
Update as of November 27, 2011.
Roma is still at the hospital. Unfortunately, he had a second wave of
intestinal GVHD and he is on immunosuppressive drugs again.
Since donor's transplant did not function sufficiently, the second
time Roma received donor's bone marrow from his father. His blood
counts started growing and are close to normal now.
Vfend is still needed.
Update as of January 12, 2012.
Roma continues therapy for intestinal GVHD with medications, such as
Campath, Enbrel and hormonal drugs. His skin GVHD is almost completely
under control. Roma feels well, but Vfend is still needed.
Update as of February 8, 2012.
Roma had two episodes of severe seizures. He is now in ICU on a ventilator
with severe bilateral pneumonia. He receives therapy with Ampholip
and wide spectrum antibiotics. He also has symptoms of mechanical
intestinal obstruction and had a tube installed. Surgery is not
possible at this time, as Roma would not be able to tolerate anesthesia.
His platelets are low and blood transfusions are needed. Roma is in
a serious but stable condition.
