Hello!
Ksenia Masloboeva (14 years old) has been at Pediatric Oncology &
Hematology unit of City hospital No.31 since September 29, 2008, with a
diagnosis of anaplastic astrocytoma (brain tumor). The disease suddenly
appeared in July 2008. Ksenia started having severe headaches, lost much
vision and memory, and felt unwell overall (she suffered from fatigue,
vomiting, body aches).
Until then, Ksyusha was a healthy girl. She studied well and took
interest in history and English classes, and played volleyball.
On August 15th an eight-hour-long operation took place to remove the
tumor. However, the MRI and PET scans showed the tumor was not removed
completely, and the remainder of it is very active.
After the operation, Ksyusha could not sit, walk or talk for 2.5 months.
Her right side was paralyzed. After a long massage therapy, she improved -
started to walk and talk. Her right arm, however, is still hanging
powerless.
We are now undergoing chemotherapy with radiation therapy. Ksenia already
completed two blocks. After the therapy, Ksyusha is in a serious
condition, as she developed toxic hepatitis. Starting November 10th, her
health took a sudden turn for worse, as she started suffering from bad
headaches and constant vomiting. Her speech reception and understanding
of spoken word were also affected. Ksenia talks now on her own language or
mumbles. She is currently undergoing urgent testing (CT scan, MRI and
PET). She may need a second operation.
Our family of five includes Ksyusha, her sister Nastia who is 18 months
old, myself, my husband Andrei, who is Ksyusha's stepfather, and
grandmother Lidia Fedorovna. I am currently on a family leave and my
husband is a blue collar construction worker. Ksyusha's grandmother had
to leave her job, because one of us has to stay at the hospital with
Ksyusha and another at home with Nastia.
We are in a very difficult financial situation now. We need help to pay
for Ksyusha's testing and treatment.
We are grateful in advance to everyone who will respond!
Update as of December 3, 2008.
Ksenia is undergoing chemotherapy and radiation therapy. Her condition
is not very good: high temperature, dizziness and vomiting. Ksyusha's
memory has not yet recovered. If she tells about something, in an hour
she cannot recall anything.
Update as of December 24, 2008.
At present Ksenia is getting radiation therapy together with chemotherapy.
It is very hard on her: she has pains in her joints and back, plus she
has allergy and a bad appetite. Because she is not feeling well she is not
even glad about the upcoming New Year's and does not take part in New Year
parties at the Unit.
Ksenia's mother
Update as of December 31, 2008.
The radiation therapy was finished on December 30th. Ksenia did not
tolerate treatment well. We had plans to go home for the New Year's
celebration, but in the afternoon Ksenia's condition worsened and
she had to stay at the unit. Ksenia's got upset.
She cried and really wanted to go home. Thank you very much
for your help. All the best wishes to you. Happy New Year!
Ksenia's mother
Update as of January 14, 2009.
On January 11th Ksenia had EEG. She was noted to have a positive dynamic
compared to EEG from November 24, 2008. On January 13th she started 10-day
chemotherapy course. Ksenia is in a satisfactory condition. She is more
active, interested in puzzles, and asks to go out.
Update as of January 19, 2009
Ksyusha needs several courses of Temodal for 21 days, 120 mg daily.
Update as of February 8, 2009
Ksyusha takes Temodal at home and she comes to the hospital only for
testing. Ksyusha feels well, and her blood pressure is normal. She goes
out to walk with her younger sister a lot.
Update as of March 6, 2009
Ksyusha feels well and she is in a good mood. We are waiting for her
blood counts to rise to start taking Temodal. We are very thankful to
everyone for helping us buy this medication.
Ksyusha's mom
Update as of June 3, 2009.
Ksyusha continues 5-day courses of Temodal. In parallel, she takes
medications improving brain's nourishment. Ksyusha is now at home.
Update as of August 8, 2009.
Ksyusha is doing well. She is continuing therapy with Temodal. The
testing results sho positive dynamic.
Update as of December 27, 2009.
Ksenia is not feeling well, she has more epileptic seizures.
Medication has been changed but Ksenia has problems with it
so she might go back to Finlepsin. On January 3 another
Temodal course is to start.
Update as of June 16, 2010.
Ksyusha is now stable, although her headaches had become more frequent,
as well as lack of coordination and periodic "auras" or seizures.
From May 8th to May 11th she had 11th cycle of Temodal. She tolerated it well.
Ksyusha also takes Trileptal, Diacarb and Asparcam.
This year Ksyusha was on distance schooling (school #594 in Moskovsky district)
and she transferred to 6th grade. She studied math, Russian, literature,
history and natural studies. She has issues with memory and remembering poems.
Ksyusha is very responsible about her studies and she would get upset if she
did not do something well.
Ksyusha likes to take care of our place. She helps me to clean the apartment,
wash dishes and her clothes. She is mostly either at home or at the hospital.
She cannot be outside for very long, an hour of 1.5 hours at the most, as
she gets tired and feels awkward around strangers.
We know that everything will be well with us! We are thankful to AdVita
fund for helping us with treatment.
Ksyusha's grandmother
Update as of July 21, 2010.
Two weeks ago, Ksyusha suddenly started feeling unwell - she had headaches
and vomiting. Based on MRI results, she has extensive relapse.
Further treatment is under discussion.
