Last Updated November 2, 2006
Before starting any treatment, Katya and her family decided to go on
a trip. They are going to visit Orthodox churches and monasteries in
California and Arizona. They are also planning to take Katya to
Today Katya and her family visited Russian Orthodox Cathedral in San
Francisco. They were given a special permission by the Archbishop
to open the cover of the tomb of St. John (Maximovich) the
to venerate his incorrupt relics.
This was the first time in five years the cover of the tomb was open.
Today Katya, Anya and their parents were in Disneyland.
Katya loved her visit to Disneyland. Her favorite ride was
"It's a Small
World!" which she did twice.
She had a little accident - bumped into a fence. She was
rewarded with an icepack and a special visit with
She was also allowed to bypass a long line and visit Mickey's house.
Minni was her favorite because she kissed her twice while the other
characters kissed her just once. She got really scared in the haunted house.
The main event of the day was a visit to the
Center for the study of Natural Oncology in Solana Beach, CA.
Vincent Gammill, center's research director,
told us about different alternative cancer therapies.
Now we have a lot information to check and research.
The family arrived
Saint Anthony's Orthodox Monastery in Florence, AZ,
an oasis in the middle of Arizona desert.
They are going to spend two days there praying with the monks and pilgrims.
Masha, Sasha and Anya went to the early morning (3 a.m.) service
held by Elder (starets) Ephraim, the founder of the monastery, former
Abbot from Mt. Athos. Katya also was there, but during the whole service
she slept on the church's floor with a happy smile on her face.
Later in the day they had a private meeting with Elder Ephraim and received
The family spent two wonderful days in the welcoming atmosphere of
St. Paisius Serbian Orthodox Monastery in Safford, Arizona.
The girls enjoyed running around the farm animals.
They played with the nuns and other pilgrims' children
in the idyllic setting of the monastery. Anya got herself busy
with the kitchen work and Katya discovered that she really,
really likes goat milk (thank God, we know a friendly goat farmer not far
On Tuesday the nuns held a special service for Katya.
They read and gave Katya a special hymn,
to the Mother of God "Healer of Cancer",
that was printed in their monastery.
Katya accepted all the attention and presents like a true celebrity.
She was so happy she did not want to leave.
She said that this place was "as good as Disneyland".
In the afternoon they left for San Diego.
What we thought Katya would like about San Diego was the Sea World.
And she liked it indeed!
When they called home from San Diego, Katya
told Julia (her aunt) that she saw REAL penguins, REAL dolphins and a
REAL shark! She even saw a
(a "sea cow" in Russian), but she was not sure whether
it was a "sea cow" or a "sea pig".
They saw Sea Circus and other exciting shows with
seals and otters.
The most exciting of all was the performance of
two Orcas in the Shamu Adventure.
Despite the promise that people in the first 14 rows
might get very wet, Katya & Co did not get wet at all. What a
Another set-back for Katya was that she turned
out to be just one inch shorter than the treshold (42 inches) for the
that Anya enjoyed so much.
But Katya was amply rewarded and got REALLY wet
after spending two hours at the great playground called Shamu's Happy
Harbor. It has lots of climbing nets, tubes, slides, a water maze, and a
two-story ship to climb and shoot water from.
After leaving Sea World Katya and the family did not go too far from San
Diego. They spent the night in the house of their new friends, Vadim and
Mission Viejo, CA, just South of Los Angeles.
There Katya was very happy to find many wonderful toys and - what a surprise!
- her dear old friend Tolya Pekelny.
In the morning, Katya spent two delightful hours
at the paradise-like Dana Point beach
feeding squirrels, building sand castles,
jumping in the waves, and playing in the warm ocean.
She got so energised that she easily tolerated a non-stop 7.5 hour
trip to Berkeley to the house of Lora and Sasha Givental, where
Emil was waiting for her.
For several hours Katya and the family talked to Dr. Morrison, a
well-known Bay Area homeopath. He gave Katya some homeopathic
remedy for improving her immune system.
From Dr. Morrison's office they drove straight home.
They came back home in the middle of the night very exhausted.
Katya's grandmother, aunt, uncle and the cousins were happy to
see her and to get a first-hand account of their trip.
Katya spent the whole day playing with her
new doll house. It's good to be back home!
Katya came back from the trip almost unchanged. She went to church
in the morning and played with kids after the service.
The major noticeable difference is in her diet. Besides goat milk,
she now "likes" whole grain bread, brown-rice pasta, broccoli
and other healthy things. Sweets white bread are things of the past.
When her aunt told Katya that she will get a treat after taking her
medicine, Katya said that she is not supposed to have treats.
The brave child takes her vitamins, flax oil and other food supplements
Katya looked tired in the morning and complained that she has difficulty
This could be a natural reaction to some of her supplements, but this
might have been a new symptom of the disease.
To find out what exactly was going on, we took her to the Children's Hospital
in Portland. There doctors took a CAT scan and found out that everything was
the same as two weeks ago.
After being such a brave well-behaved girl for so long, Katya
started bargaining before taking her medicine.
Today we had to allow her to watch two movies.
Katya had her first piano class today. Even though she has really wanted
to have music lessons, she was not very cooperative. Maybe she will change
We started giving Katya Koraku Liquid, a herbal extract
which has been used in China as an anti-cancer treatment
and was successfully tried at several Chinese hospitals.
Its main ingredients are American Ginseng,
Bei Qi (Astragalus),
Han Lian Cao (Eclipta), Huang Bai (Phellodendron), Lin Zhi
(Ganoderma lucidum or Reishi mushroom -- mushroom of immortality).
We learned about it from our friend
and ordered it from Toyo Kampo Institute in Tokyo.
The first few doses Katya took stoically, but by the evening
she apparently decided that she has had enough. Neither her favorite cartoons,
nor fairy tales would work. Even a special poem written by her Aunt Julia
about naughty boy Barnabe who did not like to take his medicine did
not convince her to change her mind. Only after a full hour of pleas and
promises did she agree to finish the dose. Everyone involved was
completely exhausted after the ordeal.
In the morning Katya and her parents went to Portland to see Dr. Thom, a
He added to her diet a homeopathic dilution of juniper mistletoe.
Then they went to Portland Zoo. There they visited elephants, monkeys,
hippos, penguins, zebras and giraffes. Cheetahs too.
Katya was a bit tired and whining, so she preferred to be taken around in a
However whenever she saw a playground she jumped off her
stroller and had a lot of fun!
Even though Katya once complained about a headache, overall the trip to
Portland went quite well.
Taking Koraku is still challenging, but it goes down much easier than
Today Katya, Liza and Mitya made mosaic pictures from five different kinds of
dry beans. Katya made a neat circle, white on the outside and black and brown
inside. She told Sharon, her and Lizka's teacher at the Little French School,
that the picture did not really mean anything. Sharon called her picture
abstract and Katya agreed with this definition.
In the afternoon Katya, Liza, Mitya and Julia went for a walk.
The girls were wearing funny hats and laughed a lot. On the way back they
picked some blackberries. Katya refused to eat them, maybe because everyone
was saying that they were good for her. (This is exactly why she stopped
Taking medicine was almost a breeze due to Julia's
fairy tale about a fearless knight and a dragon.
Katya and Lizka played outside with Katya's toy parrot which repeats
everything that is being said to him. After that they decided to have
an outside art studio.
Lizka painted a girl with red piggy-tails for Katya. Katya at first was
painting colorful circles
and other abstract shapes, but at the end she also started drawing something
Today Father David was out of town and Katya and the family went to
St. George Greek Orthodox Church.
Father Timothy and the parish prayed for Katya's health.
In the afternoon Katya and kids went to a playground.
She was very cheerful and energetic and it took us some effort to
pull her off the monkey bars.
The knight and dragon story became an integral part of the medicine-taking
routine. But tonight the story had to be really exciting to succeed.
Lena Easton and her daughter Sveta invited the girls to swim in their
beautiful pool. Katya was swimming vigorously and
enjoyed every moment of it.
In the evening Anya and Lizka opened a restaurant and Katya was their
customer. It was a good opportunity to dress up. After several changes
of clothing, Lizka became a monsieur and the couple dined at
Anya's fine restaurant.
Today's music lesson went really well. Piano
teacher Olga said that she was very impressed with Katya's ability
to distinguish notes and their combinations.
In the afternoon, the girls had their second enjoyable visit to Eastons' pool.
Today the kids had their first day of school. Katya spent two hours
at her Little French School. She is in Kindergarten
now. Her teacher Sharon said that she is extremely good at
writing letters on ruled paper.
In the afternoon we took Katya to Dr. Bradshaw, her pediatrician, for
a checkup. Even after having some blood drawn from her vein, Katya
was quite cheerful. We found out that since her previous visit,
Katya lost three pounds, probably because of her new diet.
Her eyes are slightly more crossed. Otherwise Dr. Bradshaw has not
found much change.
We scheduled a new MRI exam in a week.
At lunchtime in school, when other children took out their lunch boxes,
Katya was cheerfully chewing her "healthy" apples.
It looks like she has started feeling good about her new diet.
On her way home she philosophically remarked to her father,
"I wish somebody told Ainsley's parents that they should not give her
all these sweets or else she will become stupid."
Katya is getting really fond of swimming. When Julia asked her what
she would ask for if she could have anything, Katya replied that
she would want to have her own swimming pool, but the one that
does not need to be cleaned.
In the afternoon Katya had several visitors. Her ballet teacher,
Felicia, came and played with her for several hours and even
participated in the medicine-giving ritual.
Katya went for a mile-long ride on her bicycle with Sasha.
She did not even mind going uphill a few times. But at home she said,
"Oh, I am so sick, maybe somebody can take me upstairs".
In the evening she tried to reverse the logic saying, "Why do I still need to
take the medicine -- I am eating all these good foods and my head does not
hurt anymore?" However, she drank Koraku tonight in just 10 minutes.
Even Julia's tale was not necessary this time. Instead, Katya
was entertained by playing with numbers.
Tolya Pekelny came to play with Katya and brought her a toy snake.
Tolya pretended that he was a snake charmer and Katya liked it very much.
We went for another long bike ride
with Katya. She likes it and is getting better every time.
After the ride Katya and Lizka
played at the playground
climbing, jumping, swinging and hanging upside down.
The passerbys laughed and called them two little monkeys.
We've got the results of the lab tests. The blood counts and everything
is OK, except for some minor liver toxicity. This was not a surprise, since we
knew that artemether might produce this kind of side effect.
We will stop giving it to Katya for a few days.
In the morning everybody went to church.
Katya was happy there.
She played with the kids and stayed for
the church lunch (trapeza). She did not even look at the potluck meal
and enjoyed her apple, egg and bread.
In the afternoon the family went to St. Anne's Church in Albany
to venerate the wonderworking
Sitka Icon of the Mother of God.
This is the first time in its 150 year history when
the icon left its home at Archangel Michael Cathedral in
Katya's favorite night-time reading now is
Volshebnik Izumrudnogo Goroda
(a Russian version of The Wizard of Oz).
It really helps the medicine to go down.
Katya laughs happily every time Elli (Dorothy)
does away with witches or other bad guys.
Today Katya had an appointment with an osteopath who said that
"her energy is blocked a the ear level" and said he would work with her.
During the afternoon walk, Katya, Lizka and Anya pretended that they
were Tom Thumb's (Malchik-s-palchik) sisters. They were dropping
beans onto the ground to mark their way. Later they collected the beans
and thus found their way back home.
Today Andrysha and Vanya, two four-year-old boys, came to play with Katya.
They built foam block houses for good fairies and their servants.
When Katya started eating her lunch --
red rice bread and goat milk butter, the boys were offered the same.
"Wait! Give them some white bread -- it's only me who is so very sick",
When Natasha (Katya's grandma) was along with Katya,
she pretended that she does not know how to give Katya
her medications. This trick worked very well. Katya
stirred her algae and swallowed them in no time. Then she
drank her Koraku in one gulp. This was a new world record.
Katya did quite well at her music lesson. After that
she went for a bike ride along the Willamette river.
In the evening, while watching a movie, Katya asked for
her left eye to be covered with a patch. "Oh, I see much
better now! And also there is only one wolf and only one
rabbit as it should be." After the movie, however, she removed
the patch. We also noticed that Katya is having difficulty
raising her right thigh.
Today we took Katya to the osteopathic doctor.
We were slightly worried that Katya would mind going to yet another doctor,
but she liked him.
After the visit she remarked that he was not really treating her,
but only gently stroking her head.
In the afternoon Katya went to her
She was looking forward to going there, so we decided to
take her even though we were concerned that it might be difficult
for her to dance.
We were so wrong! Katya enjoyed every minute of the class and
nobody could tell she is having any health problems.
Back at home Katya spent the evening with Sasha studying children's
book on reptiles. Gecko lizards were her favorites.
She was especially impressed by the fact that they can
lick their own eyes.
Today Katya had her second MRI exam. We all were very nervous for
obvious reasons. Katya was nervous too -- she remembered very vividly
that the doctors gave her a shot in the arm last time she visited the
This time the shot was given much quicker (thanks to the good nurse Amber
who promised that she will always be giving shots to Katya when she comes
for an MRI), but the drug had a hard time putting Katya to sleep so they
had to give her an extra dose of the sedative.
After the procedure Katya was very sleepy and did not become fully awake
till late in the evening.
Well, we don't have an official evaluation of the second MRI yet, but
when we compared it at home with the first one done on August 11,
there was absolutely no difference in the shape or the dimensions of the tumor
(good news), but some areas of the tumor looked more enhanced by
the gadolinium (the MRI contrast agent) than before. This may mean
that in these parts the tumor got more dense, or it may be
because of a slight difference in how gadolinium was administered.
I guess, we will know tomorrow when we see Dr. Nicholson, Katya's
oncologist in Portland.
We've got the second MRI report.
It confirmed that the tumor has not grown in size since the
previous MRI five weeks ago. However there are two small areas
inside the tumor that are enhanced on the MRI scans.
(Go here to see for yourself.)
This means that the tumor became more dense in these areas.
We went to see Doctor Nicholson in Portland OHSU Children's Hospital.
After examining Katya, he told us that, despite
weakening of the muscles on her right side and two new spots of
enhancement on the MRI, he was pleased to see that the tumor has not
progressed too much. We discussed possible treatment options.
From the hospital we went to the Portland Children's Museum.
It was so great to play with ships, castles, caves, pneumatic pipes,
musical instruments, etc. There were even more wonderful things there for
which we did not have time. The exibit Katya liked the most was
the doctor's office. She had so much fun treating patients with
ear aches and sore throats. But even more exciting was being
a crocodile's dentist .
Today Katya, Liza and Anya were sailors on
a make-belief ship at the playground (which represented a
turbulent ocean). There were rocks, shallows, islands,
pirates, and many adventures.
The flow of presents continues. Today Katya played for several hours
with her new Barbie princess from Mila Stein.
Katya loves presents. However, she told us today that when
she gets many of them, she suddenly becomes not such a good girl.
Julia made for Katya a new book with pictures and a fairy tale
about a noble knight. This knight brought magic medicine made
of Koraku tree bark to the sick people of a Japanese island.
After reading this book, Katya said, "But you know, this is not
for real -- this Koraku medicine is not magic, I take it every day."
Nevertheless, today she drank her Koraku in one gulp both times.
Before putting Katya to bed, Masha gives her a sea-sponge massage.
Katya likes it so much that she asked Masha to keep doing it
after she gets well.
Katya stayed for trapeza after church and later played with
children. Kids are very intrigued with her new diet which she now
follows diligently and with a certain pride. Andryusha even asked his
parents to give him only black bread and "real" (not instant) oatmeal, since
he does not want to become "stupid".
The same interest in the contents of her lunch box Katya
experiences at her school.
Katya is so used to her new routine that sometimes she
reminds us what to give her next.
Tonight Tolya brought a plastic pipe for making all kinds of
loud sounds and Katya immediately started testing our patience with it.
Katya's second MRI exam is now available online
After school Katya went for a very long bike ride (about two miles).
While on a hill, she remarked that Sasha (her dad) is stronger than
Mitka (her 16 year old cousin), but Arkasha is even stronger,
"because he can hold me on a bike going downhill." Then she added
"But the strongest of all is God, since He can make me healthy again.
This would be a miracle and after that I would become a saint and
I will have to behave and obey grownups."
During her sleep last night Katya had nightmares and screamed. When
Masha took Katya to her bed, she started kicking and fighting without
waking up. In the morning she said that she had a very bad dream.
In the evening Katya and Lizka were dressing up. Katya was Queen Katherine
and Lizka was Princess Elizabeth, the reverse of what really happened
in 18th century Russia. Soon enough the royalties forgot about the high-court
manners and started running around the house crushing everything with a
(another present from Tolya Pekelny).
Katya is reading with Natasha two books on Greek Mythology, one in Russian
and another in English. She knows who is married to whom and who the
siblings are. She takes a scholarly approach comparing the Russian and
English versions and finding discrepancies. Her favorite is Athena,
the Goddess of Wisdom or Smartness ( Umnost' ) in Katya's rendition.
At the ballet class it was hard for Katya to dance well because of
the weakness in her right arm and leg. However she tried hard
and enjoyed the lesson.
Today was a big medical day.
First Katya visited her pediatrician for a checkup. Dr. Bradshaw told us
that Katya regained some weight she lost in the first weeks of her
diet. She has increased intracranial pressure and, if it does not go
down, we will need to start giving Katya steroids.
Then Katya went to Dr. Borg, a naturopath. She and also Dr. Morrison, a
homeopath from Berkeley, gave Katya new remedies which might help
her to avoid using steroids for now.
In the afternoon Felicia, the ballet teacher came to visit and
to practice with Katya. Katya did not want to dance to music from class
and insisted on using Bach's concerto. To everybody's (except Katya's)
surprise, this worked out rather well. Katya danced much better than
yesterday and even jumped a few times.
Speaking of surprises. A few days ago, when Masha told Katya that
if she drinks her medicine, she will have a surprise, Katya immediately
replied "I have a better idea, Mama --- let Lizka take this very useful
medicine and I will have a surprise."
Today Anya invented a new game to help Katya with food and medicine.
Katya was a Queen's lady-in-waiting and Anya was her teacher of manners.
As it turned out, really well-bred ladies
have to know to eat neatly cut slices of apple, tomatoes,
cucumbers, pieces of fish and to be able to top this all off with several
spoonfuls of yogurt.
In the morning Katya went to school, but did not allow
Sasha to leave. He had to stay and play
hide-and-seek with Katya.
In the afternoon Katya played with Mitya and Liza.
Liza and Katya were two ladybug sisters, Itsy and Betsy,
and Aunt Julia was their pet ant. Mitya was a spider who chased the
lady-bugs. When the spider with Sasha's help
finally managed to get Katya from her hiding place
under the sofa, the girls went to the playground on the bicycles.
We've got a call from the lab with test results -- all parameters
are within norm.
Katya went to the playground with Sasha, Anya and Tolya
Pekelny and made everyone try bread she baked at
her sandbox bakery.
Back at home she plainly refused to eat lunch.
But for dinner she was devouring fish, soup, veggies, and bread
like a real little elephant.
After service Katya played for a long time at the church
yard. She was very active jumping and running around.
She also played soccer
with Elisha and Mitka and had
fun with some other people too.
Back at home she was so hungry that demanded and quickly
ate half of a goat cheese pizza.
In the evening Father David and his wife, matushka
Esther, came to visit. First we read
Katya and then Father David played with her.
She laughed happily
crawling in and out of his ryasa and asked him
to come again the day after tomorrow.
This morning Katya woke up at 7am, about three hours earlier
than usual, and broke into her parents' bedroom shouting
"Mama, where is my homework? Several days ago you
said you'd give me math homework --- give me my math homework
What else could Masha do but to give Katya an
assignment? After doing several pages of exercises from the
Singapore Primary Math workbook, Katya demanded to have a reading
lesson. After several words she said that she is very tired,
went to bed and slept for another few hours.
In the afternoon we went to Portland to talk with
Dr. Nicholson. Katya stayed behind in Eugene with Natasha
and Tolya and Sonya Pekelny. Dr. Nicholson gave us prescriptions
for new medicine -- molecular agents to inhibit tumor's signaling
These drugs are taken by mouth and are less toxic than the standard
Katya's interest in ancient history is still strong. Today her favorite hero
is Ulysses. After reading for the third time the story of the Trojan Horse,
she had a scholarly discussion with Tolya about who was wiser
and more cunning -- Ulysses or King Solomon. They eventually
agreed that King Solomon was the smartest of all.
At school Katya was making patterns from colored cubes:
2 orange, 2 blue, 2 orange, etc. But then she
saw that other children alternate 1 orange, 1 blue, ...,
and changed her pattern to conform to the majority fashion.
After school Katya went to the hairdresser's.
Yesterday Katya and Sonya started working on Katya's new hair style and
Amy neatly finished the job.
Today Katya heroically swallowed 5 new pills.
Yesterday, when Masha told her that she would have to start taking
new medicine, Katya got very scared, since she had never before swallowed
large pills. But people at the pharmacy gave Katya a special
magic cup for taking scary drugs. The very first pill Katya swallowed
using the cup. After that she was no longer afraid and allowed
the remaining pills to be simply thrown into her mouth.
Katya visited her osteopath today.
She likes the procedure a lot. It makes her
so relaxed that she nearly fell asleep while
the doctor was working with her.
In the afternoon Katya went to the ballet class.
It is not easy for her, but she tries hard and likes the experience.
There were no problems with taking medicine.
Katya swallows the new pills easily.
But we had our share of screams and kicks when we tried to take
Katya out of the bathtub at bedtime.
Tolya and Sofa Pekelny came to say goodbuy
before their return to California (hopefully not for too long).
As always, they showered Katya with toys. Tolya and Katya
blew a dozen of balloons and this made both of them very happy.
In the afternoon Katya gladly went for a bike ride with Lena and Phillip.
But when they arrived to the playground, Katya did not want to
stay there and said that she is tired and wants to go home right away.
In the morning Katya was taking her pills cheerfully. But in the evening
she did not want to cooperate and it was very difficult to convince her
to take the medicine.
Katya and Sasha decided to open an art studio at the backyard.
Katya enthusiastically mixed paints, but as soon as she started
putting them on paper, it began raining.
The medicine taking went along smoother than on Thursday, but
not without problems. To solve these problems Julia came with
her new tale about Itsy and Betsy, the ladybugs.
The whole family went to Eugene City Library
and brought back several bags of books.
Katya liked walking between the rows of books,
picking a book and reading it on the floor.
On the way back to the car Katya had to walk several blocks.
It is getting harder for her to use her right leg.
Back a home Katya drew a present for her friend,
Archimandrite Evsevij from Jerusalem.
She was drawing with her right hand, even though
she is having difficulty making fine finger
In the evening Katya played with Anya and Arkasha.
Katya was dressed all in white to show she that was a poor princess.
When Arkasha asked how she became so
poor that her guests had to sit on her throne,
Katya replied: "She was rich some time ago, but she liked giving
presents too much!"
Taking food and medicine was easy today even though
Katya's daily regimen has over 30 items now.
While she was playing after the church service,
Katya vomited and made everyone (including herself) very scared.
We do not know whether this is a reaction to the new pills,
or a sign of tumor activity.
After the morning incident, Katya got afraid of taking hard pills.
Eventually we managed to persuade her to try them again.
She was very surprised and proud to find out that she is swallowing pills
better than before.
The day did not look promising from the very beginning.
In the morning Katya had to go to the lab for a blood test.
She cried bitterly and pleaded with Masha promising
to do anything for the permission to stay at home.
When, after fierce kicking and fighting the test was done,
Katya calmed down but looked offended (and exhausted).
At the music lesson in the afternoon her mood has not become much better.
Katya hid under the piano and resisted all efforts to engage her
in musical activities.
Only in the evening while playing with Lizka
at home did she become her old happy self.
In a car, on the way to Portland to the weekly checkup with her
neuro-oncologist, Katya threw up all her morning intake of food and
Dr. Nicholson said that this morning sickness may be a reaction to
the pills, but more likely it is related to the discharge of fluids by the
tumor. His assessment of Katya's condition was that even though
weakness in her right leg and arm indeed increased, she manages them
well and no drugs for symptom treatment are necessary at the moment.
Katya had another appointment in Portland today -- with Dr. Thom,
a naturopath who replaced one of her homeopathic remedies with
Between the two doctors Katya and her parents visited the beautiful
International Rose Test Garden . After coming home Katya told us
that she was in the Rose Museum and saw the most beautiful roses in the whole
All day Katya was inventing conditions and excuses
trying to avoid taking any food and medicine at all.
As a result everyone got exhausted.
At the ballet class Katya suddenly became very energetic
and even started jumping.
In the evening Katya's grandmother Lyusya arrived from Moscow.
We hope that her enthusiasm and positive energy will help Katya to
become more active.
Lyusya's presence indeed immediately became noticeable.
All day long she was feeding Katya, giving her medicine
and inventing various fun activities.
They went for a bike ride, danced, sang songs, played in the
back yard, worked on jig-saw puzzles.
Katya was so happy that for
the first time in weeks she did not even notice when
Masha and Sasha left home for a few hours.
Playing with Lyusya Katya moves more and, what is very important,
uses her right arm and foot more often. Today, while her
parents were away, Katya was teaching Lyusya the right way to give her
In the afternoon, Katya visited Mara and Kiryusha Myagkov.
Katya was especially fascinated with their two
pet geckos, even though she was a bit shy
In the evening Katya was making patterns with colored pyramids.
Then she suddenly dressed up and declared that she is a wife
of an English crown prince, but when she becomes a Queen, she would
Today Katya went for a horseback ride
with Tosha Perlina and her beautiful Arabian horse Trixy.
Katya was absolutely euphoric -- she was laughing out loud,
singing songs and did not want to go home by car -- only on a horseback.
Luckily for us, on the way back it started raining and Katya changed her
When she was telling at home about the big event, Katya
said that the horse was moving slowly because she was told to
be careful, but "of course she could gallop if she wanted to."
When everyone started praising Katya's courage saying how
brave she was, she replied: "Don't you know that the only thing I am
scared of is dragons!"
Indeed, for the last few days Katya was bravely taking her
medicine, walking downstairs without support and throwing and catching
balls with both hands. She gets tired easily, but after laying down
for a while, she would get up and go on playing.
After church Katya played with Mitka for a couple of hours.
She was a queen and Mitka was her brave knight and performed various heroic
deeds for her, such as rescuing the princess from a dragon.
In the afternoon Katya went to the playground with Lizka and Lyusya.
She is having difficulty walking, but
on the playground she hardly ever notices it.
In the evening Masha was preparing Katya for the blood test on
They had a thorough scientific discussion about the red and white blood cells
and their various functions and how it is important to know exactly what is
going on in the blood when the person is sick. Katya was very interested
in this and seemed persuaded that the test is nothing worth being afraid of.
We will see how it goes tomorrow.
Approximately one hour after the morning procedures Katya vomited.
She was not scared as the week before, but the nausea lasted
longer and Masha gave her Zofran. It helped and by the time
they came for the blood test, Katya felt better.
When they arrived at the lab, Katya began to cry, but
relaxed after Lyusya started singing to her and
took the shot quite well. Later she told Julia that she
got used to giving blood. She is no longer afraid of shots
which pull stuff out of her, but still does not like it when
they put stuff in.
In the afternoon Katya
played with her new Lincoln logs set and built five
In the evening nausea came back and we gave Katya ginger tea.
It was very spicy, but the good girl drank it all while watching
"Tale of the lost time", a movie that Lyusya brought from Moscow.
In the morning Katya with Masha and Julia went to
Portland for the weekly check-up with Dr. Nicholson.
He said that nausea is likely to be caused by
the chemo drugs and is not something to worry about now.
He also said that if the symptoms worsen, he
would recommend steroids and radiation therapy. But if
the next MRI shows no tumor growth, he would instead add an
antiangiogenic drug Thalidomide.
From the hospital Katya and Co. went to the Rose Garden,
where they savored the heavenly odor of roses
views of Mt. Hood and downtown Portland.
They played hide-and-seek among the rose bushes.
Katya was always hiding behind a "laughing rose",
the unusual kind that starts giggling when you approach it
and bursts into laughter when you bend down to smell.
On the way back Katya became tired and it was
hard to give her food and medicine.
Then she fell asleep in the car and slept through the whole night.
Katya had nausea almost all day long and had to
miss the ballet class.
Walking is becoming more
challenging because of the "naughty" right leg.
Katya says that the leg is not behaving -- when she asks it
to walk, it just trembles and disobeys.
"It wouldn't walk no matter what - whether I beg or scold it.
But my hand behaves much better - it allows the other hand to
help it and they do things together well!"
The leg is the only thing that really bothers Katya now
and she says that she wants to get better very much
so that the leg would stop being lazy.
(She does not seem to mind the double vision, even though
she has to close one eye while watching movies.)
Katya spent the afternoon dressing up in the beautiful
dresses that Olga Weinstein sent her.
Katya said that she is getting so many presents because
"she is the sickest girl in the world."
Anya had got a flu and stayed with Lizka and Mitka in their house
for several days.
Today Anya is finally back home. However she had to miss school
again. Katya has missed Anya so much, she would not let her go.
When Grandma asked Katya, 'Who do you love best?', Katya replied:
"Most of all I love God, then Angels and Saints, and in the third place
I love Anya."
When Katya got up at 7 am (instead of her usual 9) she wanted
to wake Anya right away, but Masha would not allow her. Katya then said
that OK, she would wait for 5 minutes. She established herself on the floor
near Anya's bed and every 30 seconds shouted "Mama, how many more minutes
should I wait?" Everyone was very happy when Anya finally got up
and the shouting stopped.
Katya was at the playground for short while and then she and Lizka
played with the neighbors' cat Bayukha.
Back at home Katya watched the video about Lyusya's cat, Musya.
Katya had some nausea after taking her drugs, but a cup of
ginger tea took care of it.
Today Katya was quite active. She danced and built log houses
with Lyusya. In the afternoon she spent several hours at the back
yard playing and raking leaves.
In the evening the
whole big family got together for dinner.
Katya was very excited to find out that there were exactly
ten people at the table. She clearly felt better than yesterday,
although several times she would rush to the table to have a few
gulps of ginger tea. This was the only indication that she had
A couple of days ago Katya got a new Barbie doll as a present
and was disappointed that it was an exact twin of another Barbie
she had. So she and Masha went to the toy store and exchanged it
for a Cinderella Barbie. The rest of the day Katya was playing with
this new doll and even built a log cabin for her.
In the morning Katya said she had pain in the lower back part of her
head. However, we are not certain about the exact location. It may just as
well be her strained neck rather than head that was giving her pain.
Katya did not complain about anything else today. She did not even ask for
ginger tea and probably did not feel nausea. (She had some ginger with
We finally updated information on the
page with Katya's treatment regimen. It was long overdue.
Today Katya woke up with a strong headache and
was complaining about it bitterly.
She was very week the whole day.
Despite this, she played with kids at the church
playground and then invited Anya Laptova and played with
her at home.
After a brief ride on Sasha's back to inspect Halloween decorations
in the neighborhood, Katya asked to go home and was fast asleep
before we had a chance to give her any food or medicine.
Hopefully, the fatigue and headache are due to Gleevec.
After all, according to
some studies they occur as side effects in 30%-45% of patients.
We have posted some new nice photos from the past few days, please check them
Katya woke up at 3am demanding entertainment in the form of fairy tails and
playing with her Barbie dolls. It was almost 7 when she finally agreed
to go back to bed.
She looks more active than yesterday, but is still very fatigued.
Katya was reading tons of books and watching Disney cartoons all day and
did not want to leave house.
Only after Julia told her that her help was needed to chase away bad
Halloween spiders that were threatening the ladybugs Itsy and Betsy,
did Katya agree to go for a short walk in the neighborhood.
With her right leg becoming "lazier and lazier", Katya feels very insecure
walking on her own and wants to be held by the hand or carried when outside.
Nausea and fatigue are gone and Katya clearly feels better.
She even claims that "I am as strong as when I was not sick, only my leg is
very lazy." However, the truth is that her right arm is weakening even
faster than the leg, and for example, she can no longer close her fingers to
When they came to the lab for her weekly test, Katya wanted the blood to be
drawn from her right arm. But the arm was so numb that they only managed to
get just a few drops of blood from the vein, so in the end Katya agreed to
use her left arm.
After the blood work, Katya went to the osteopath. The doctor told us that
her energy level was better than the week before.
In the evening Julia and Arkasha took Katya for a walk. At first, she did not
want to move at all. But then a black-and-white cat came by and Katya started
running after it and play hide-and-seek (or, rather, cat-and-mouse).
She stroked the cat several times with her coat and explained that the cat
would like it better if she used her bare hand, but "if I touch my mother and
father after stroking a cat, they may get very sick" (they are both allergic
Blood test results were quite good. The white blood counts are back to
norm, and the only abnormal thing was a slightly lower hemoglobin level.
This may be caused by Artemether or Gleevec, but there is no need to worry
about it now.
Katya had a ballet class today. She tried very hard to
do all movements right, but with the lazy arm and leg, it was very difficult.
Still, she enjoyed the class very much.
In the evening Brad Shelton came by with his great dog Cleo and they took
Katya for a walk. For an hour and a half Katya was running wildly after Cleo,
laughing happily and completely ignoring the fact that her leg was not
working properly. And Cleo behaved as if she knew exactly what was expected
On the downside, we noticed today that when Katya cries, her face moves
asymmetrically. This might be an indication that some of her facial muscles
Katya visited her pediatrician today. Dr. Bradshaw confirmed that the blood
test was all right except for some minor signs of anemia. She also
noticed progressing neurological symptoms in the right side of Katya's body.
We will get a more detailed picture from an MRI test tomorrow.
In the morning Katya had her third MRI exam.
She knew the drill all too well and did not make any fuss.
She was relieved, however, when her old friend Amber came to give her
the I.V. shot. This time Katya did not need an extra
dose of the sedative and she was not so sleepy for the rest of the day.
After the procedure Katya and Masha picked up Katya's new wheelchair.
Katya was very exited to have her personal vehicle, but even more
so to get two teddy bears (a polar bear and a purple witch bear) as
a present from the store. From there they went to Julia's house
where Katya played with Bayukha. They were going to pick up Lizka from
school, but Katya vomited soon after taking Gleevec and stayed at home.
We have not got the official MRI report yet, but
it looks like the tumor has not changed much in overall size.
It became more round (something like 5 x 3.5 x 3.5 cm compared with
5 x 3.8 x 3.1 cm before) and the enhancement spot grew longer by about
20-25%. Also the tumor seems more vascular which makes starting Thalidomide
even more appropriate. We will probably have a better understanding of the
situation on Monday after visiting Dr. Nicholson in Portland.
Katya and Lizka went to Dasha's birthday party which was held at
a pizzeria. The girls were quite happy having their healthy food instead
of pizza, but when a chocolate cake was brought in, Katya
demanded a "healthy" cake for her. When she was told that they do not have
a healthy cake, she started crying and then suddenly stopped and said
very calmly that she would settle for five pieces of ham from that pizza.
The cook quickly made her a special toasted ham after which Katya became
very happy and enthusiastically
played with other children at the party.
Lizka even claimed to see Katya raise her "lazy arm" to the monkey bars.
After church service Katya was making bead bracelets and
played with children for a long time.
Masha got a cold and had to be isolated from Katya.
Arkasha was summoned to help with medicine taking.
Katya was not very happy to have her strict uncle in charge,
but being smart as she is, she quickly realized it was in her
best interests to play by the rules. Everything went smoothly
that night. Katya even had time for her favorite treat -
she did some math "homework" with Arkasha and Lizka.
We went to Portland with Katya to see Dr. Nicholson,
the funny doctor as Katya called him (because he never
gives her shots and plays with her). He confirmed that
the tumor looks stable in size,
although the enhanced spot seems a bit larger than a month ago.
After a neurological examination Dr. Nicholson
said that Katya's symptoms did not progress much.
He was clearly pleased with the results and said that he will prescribe
Thalidomide and may add another drug to our "cocktail" in two weeks,
if there are no serious side effects.
After the hospital it was Katya's turn to decide what to do next.
She chose to go to the Rose Garden
to play hide-and-seek in the rose bushes.
The whole day Katya was very well-behaved and did not have problems
with medicine or with anything else. She confessed to Masha with
"Mama, you know, I like it better when I behave, than when I throw
Today a physical therapy doctor visited Katya in her house.
She showed Masha and Katya how to do massage.
She also suggested that we get Katya a special orthopedic boot to help
with her right foot.
We've got a copy of the radiologist's report for Katya's
third MRI. A complete copy of the scans is also available online.
In the morning Katya had her regular visit with a naturopath.
Then she went to the orthopedist to order a special boot for her
right foot. She was quite exited about the idea of helping her "lazy foot" to
be good again, but it may be challenging to convince Katya to actually wear
Meanwhile it gets harder and harder to convince her to walk. She prefers
to sit or even to crawl.
In the afternoon we were celbrating Mitka's 17th birthday.
Katya gave him a wonderful blue unicorn .
She was very pleased that we had a special "healthy" pie
made from tapioca flour, goat cheese, butternut squash, mango, pears and
She did not eat much of it, but she had lot of
Katya still enjoys visiting playgrounds,
but as walking is getting more difficult, she tries not
to walk at all.
In the afternoon Irene Dyer from the church came to visit with her
the dog Sophie. This gave Katya a great legitimate
opprotunity to spend time on the floor.
Lyusya has a theory that Katya simply does not want to walk unless she is
wearing a long dress so that nobody sees that her right foot moves awkwardly.
Today Katya went to Andryusha Kleshchev's birthday party.
His mother prepared all meals so that Katya would be able to eat, but
Katya did not touch anything. She was rather aggressive and did not play
well with the kids. She also flatly refuses to walk.
Today there was a special service for Katya at St. John's Orthodox
Church during which she was given the sacrament of Unction (
soborovanie ). This was a long and a solemn service during which three
priests (Fathers David and Stephen from St. John's and Father Timothy from
St. George's Church) read all places in the old and new testaments about
miraculous healings and anointed Katya with prayer oil.
Katya had a very good time at church.
When she returned home, Jon and Kathy Brundan and their children came to
visit. They had great fun carving pumkins and reading Dr. Seuss' books
Today Katya had several medical visits.
It gets harder and harder to draw blood from her veins at the lab --- the
blood simply would not flow.
During the regular checkup with the pediatrician Dr. Bradshaw confirmed that
Katya's facial asymmetry gets stronger. This may be a sign of some tumor
swelling which is not visible on the MRI.
Then Katya went to the orthopedic doctor and got an orthopedic boot which is
supposed to prevent her right foot from dragging. At first Katya did not want
to wear it, but after realizing that it helps her to walk, she spent two
hours in it. As a result she got blisters on her foot. We will have to
take the boot back for adjustment.
The whole day today Katya was rather anemic and did not want to eat.
When she came to Lizka's house to go trick-o-treat together, she
was very exhausted. Katya just laid down on the floor in her cute green
cartepilar costume and talked about the costume she will wear the next
year (grey elephant). Eventually they did visit several houses (some
neighbors gave them beany babies instead of candies because they knew about
the girls' new healthy lifestyle).
Tuesday 11/1 -- Tuesday 11/15
Sorry, we have not had time for updates during the last two
weeks. We have been traveling to California and had many out of town guests.
We will bring the site up to date soon.
Meanwhile, here is a brief digest of Katya's condition.
Katya added a new drug to her regimen, Thalidomide, on November 2.
Still, her symptoms are slowly developing. Facial asymmetry is more
noticeable and she cannot walk any longer unassisted. Also she almost never
wants to eat anything, and feeding her is at times more challenging than
giving her medicine. It is not clear whether this is happening because of
the tumor growth or due to reaction to drugs. We hope to learn more after the
next MRI at the end of this week.
Katya is very weak and lethargic. Despite the new and improved orthopedic
boot that really helps her to control the right foot, she does not want to
move at all.
Today was the first time she vomited
in the morning before taking any medicine or food.
Katya practically stopped eating and drinking - during the whole day
she ate half an orange and a few bites of a bagel. Still she takes medicine
dutifully (of course not without imposing her standard conditions and
prerequisites). At least she is getting some water and calories with the
Katya feels nauseated and is extremely weak. She would not even sit up by
herself. In the morning a new massage therapist came, but Katya
was not fit for anything more than some gentle strokes (which she liked).
Also a physical therapist brought her a new and a very fancy wheel chair.
In the afternoon we took Katya to Dr. Bradshaw and she got very worried
because of Katya's condition. She recommended to put keep her in the hospital
overnight to run blood tests and to feed her intravenously. So, instead of
going to a long-awaited Lizka's birthday party, Katya went to the hospital
with her parents.
The blood tests done at the hospital showed very dangerous levels
of Katya's liver enzymes (20-25 times above norm). This is a sign of
drug related toxicity. Immediately Katya was given blood plasma
During MRI the doctors noticed an excess accumulation of cerebrospinal fluid
(hydrocephalus) in Katya's head. This usually happens because
the tumor obstructs the flow of the fluids and is accompanied by nausea,
vomiting, headaches, sleepiness, weakness, etc. The doctors were amazed that
Katya was not vomiting all the time and did not complain about severe
headaches. The decision has been made to treat Katya's hydrocephalus
At 2:30 pm Masha and Katya went in an ambulance to Doernbecher
Children's hospital in Portland (working on Katya's blood and liver along
the way). At 7pm Katya was taken for an hour-long surgery. Dr. Nathan Selden,
the head of pediatric neurosurgery at Doernbecher, inserted a shunt - a
device that channels fluid from the brain into the abdominal cavity, where it
is absorbed into the blood stream.
Soon Katya woke up and demanded food (for the first time this week) and
entertainment (they brought some Russian animated movies).
She is given morphine for pain, antibiotics and Decadron (a steroid to help
control swelling in the brain). Barely an hour after the surgery she was
already sitting up, laughing and telling stories - a dramatic change compared
with rest of the week.
Katya's liver enzymes remain high, but not as high as the day before.
We do not have report on today's MRI yet, but besides of hydrocephalus, the
images look similar to the ones from the previous MRI without noticeable
change in tumor size.
Katya was so "high" after the surgery that she stayed awake till 7:30 in the
morning. When she woke up 3 hours later, she said that she is
"terribly hungry" and immediately consumed a hearty breakfast.
When Anya, Julia and Arkasha came to the hospital, Katya was boastful:
"You know, doctors allowed me to eat chicken nuggets and French fries, just
like in McDonald's! And they said it is OK to eat this food because I was
one of the very best girls they knew. Also they took away part of this nasty
lump in my head, so now I will feel better!"
And indeed she looks and feels
much better than yesterday or two days before.
The changes are probably due to the removal of intracranial pressure
after the surgery, but the abrupt change in appetite was most likely caused by
Katya was taken off the IV in the afternoon, but she will have to stay in the
hospital at least till Monday. Her liver enzyme levels are still very high and
need monitoring. For the same reason we had to suspend giving Katya
anticancer drugs till her liver function normalizes.
Katya slept well through the night constantly making sure that Masha is at her
side. In the morning she demanded chicken nuggets, French fries and ketchup.
This was a tough task, since even at McDonald's they don't make them around
the clock. Katya patiently waited till 11am when the hospital's cafeteria
produced the first load of nuggets and fries. We knew that steroids trigger
a surge in appetite, but that it was mostly in the junk food area was news
The scar on Katya's head is healing properly and from the surgical point of
view Katya is doing just fine.
But she started to complain about pain in the areas along the shunt
and still depends on morphine.
Also she is having frequent mood swings which is also a standard
side effect of Decadron.
We noticed another worrisome change which we cannot attribute to steroids
or to the tumor activity. Katya started showing signs of memory
problems and confusion. Hopefully, this is a residual effect of hydrocephalus
and if so should soon disappear.
In the morning Katya had a blood test which showed that, even though
her liver levels are still very high, they went down a bit.
Katya was allowed to leave the hospital. While saying goodbye to Katya,
her neurosurgeon said again how remarkably strong she was and that he still
cannot comprehend that she was not screaming nonstop before the operation
from all that pressure in her cranium.
On learning that she will soon go home, Katya got overjoyed, but first
ordered another portion of McDonald's chicken nuggets and fries.
Even though today she was given only half of yesterday's Decadron
dose, she made sure everybody remembered that she is now officially entitled
to have mood swings. When her parents failed (or rather did not know how) to
satisfy one of Katya's elaborate preconditions for taking medicine, she
started throwing dishes at them and chased them out of the room.
When a passing nurse noticed what was going on, she casually
remarked "Oh, so your child is on steroids then?"
This fit of hysteria lasted for almost an hour and ended abruptly
when a calmed down Katya invited them in and asked
"Why aren't you giving me the medicine -- do you want me to die
Everyone was happy when Katya, Masha and Sasha got back home.
Katya was very excited and said that she loves and missed everyone
(including Arkasha, even though she is afraid of him sometimes).
She told us about the hospital and the good
doctors who did not give her that many shots.
She showed no signs of confusion or memory problems today.
With the pressure in her head gone and appetite restored, Katya's strength
is returning. Today she was walking around the house, first
pushing a chair or holding someone's hands.
When Katya is not having one of her Decadron-induced fits (she only had them
a couple of times today), she is rather cheerful and active. She is also
regaining her philosophical self.
When she was playing with her Maisy Mouse and was trying to find another
little mouse, Sasha said that probably the other mouse left on some
business. Katya objected saying "Mice do not have businesses and
little mice especially do not have any businesses (delov in
When Masha went out for a while, Katya was just "a little bit upset" and then
volunteered to take some medicine as a surprise for mama.
Katya seems to be sharing our concern that because of liver toxicity
she is not taking any therapeutic drugs now.
If the next blood test shows that liver has improved, we will restart the
therapy. Otherwise the treatment will have to be modified.
Today Katya had several visitors. First, Father David came
and gave Katya a priest's hat and said that she is the only
girl in the world who has such a hat. On hearing this
Katya put the hat on and wore it for several
Also he gave her a little bell to ring when she feels bad so that
people start praying for her.
In the afternoon Tolya and Sofa came and brought Katya a
cat puppet. Katya became worried that this and her other toy cat
may pose a threat to her Maisy Mouse so she started lecturing them:
"So! You understand! You can't eat this mouse -- you must be
friendly to her!"
But the cats said that Maisy looks very tasty and they are not sure
that they can control themselves.
Katya thought a little then stood up and said:
"Listen carefully, cats and mice, I will judge you. (ya vas rassuzhu).
Lyusya, bring me the book about King Solomon, immediately!"
Lyusya brought children's Bible and Katya found the story about the temptation
of Christ. After Lyusya read it aloud, Katya said triumphantly:
"See, now you understand?" But apparently not everyone understood, since
Sasha asked Katya what she meant.
Katya explained that Christ endured and so everyone (especially cats)
should also resist temptation. "One does not always get
what one wants" she concluded. After that Masha asked Katya what she herself
wants. Katya said that she wants five things and listed them:
That I do not die ( Chtob ne umeret')
That I become a Saint (Chtob stat' kakoj-nibud' svyatoj)
That the cats do not eat Maisy Mouse
That there is no war
That all the bad guys become good, but only God can do that.
Katya slept only about 5 hours this night
and was in a rather feisty mood in the morning.
She sent Masha and Sasha away
and stayed in their bed alone. When she needed something from the grown-ups,
Katya called "Good people! ( Lyudi dobrye!) Are there any good people
She often feels pain along the shunt (maybe because she is
getting less morphine and Decadron than at the hospital).
However she rarely complains and when asked if she wants to
take a pain medication earlier she often replies that she has pain, but
can tolerate it.
Her appetite is better than before the surgery.
Today, at the Thanksgiving dinner at Julia and Arkasha's house, she ate
healthy food first and got delicious home-made ice-cream (with fruit juices
instead of sugar) for desert.
Today Katya was in Julia and Arkasha's house.
First she played a little
and then started getting ready
for Lyusya's farewell party.
She sang songs
with Lyusya and with
Katya still has a healthy appetite ,
but, thankfully, she does not eat non-stop nor is she getting
hooked up on junk food as it frequently happens with Decadron patients.
The day started with a fit of anger.
Katya was chasing people around house trying to
force everyone to leave:
"Everybody, go away from me! Get out into the woods!
Put on your coats and go into the woods so that the wolves eat you!"
She got so agitated and uncontrollable that we had to hold her tightly
to help her calm down.
When the fit was over, Katya with her parents went out ("into the woods")
and came back happy
and with a beautiful Christmas tree.
Lyusya went back to Moscow.
For the last six weeks she was a source of great help and support.
We all will miss her cheerful, supportive and easygoing
In church today Katya tried to command everyone to leave.
When it did not work quite according to her plan, she got very upset.
After a small disciplining session, she calmed down and stayed to play.
In the evening, Katya and the family went to see
a fascination exhibition of Christmas trees.
She had her first visit with Santa of the season.
The struggle with Katya's bad temper continues with mixed results.
Today she did not try to send anyone to the wolves as earlier.
She apparently is getting tired of tantrums too.
Katya was not in the mood for reading lately, however today she asked Julia:
"By the way, I keep forgetting to ask you why you stopped writing me fairy
tales?". Julia promised that more stories will be arriving soon.
Later while reading one of Julia's books
with Sasha, Katya asked another of her signature questions:
"Papa, I meant to ask you something for a long time. Can you tell me
please how exactly you helped Mama to make Anya and me? "
New Year's eve
It is almost New Year and we have not updated since the end of November!
Lots of things were happening during these weeks keeping our hands full
and our mood low. We will fill in the details (and put pictures) as quickly
as possible. For now, here is a brief digest.
Katya's liver enzymes skyrocketed in the end of November and stayed very
high. As the result we were forced to take her off all drugs leaving her
without any treatment for almost a month.
Katya's MRI on December 20 showed that the tumor was no longer
stable. This was understandable, because Katya had almost no
treatment since her shunt surgery on November 19. We decided to start a
radiation treatment which will begin on January 3.
Radiation therapy is known to slow the growth and sometimes reduce the tumor.
These effects usually are temporary, but we plan to continue the drug
regimen in a slightly modified form (provided the liver toxicity does not
get out of hand again...).
We are hoping that the two treatments will produce longer lasting results.
Katya's grandma Lyusya went back to Moscow in the end of November.
Soon after that Katya's great-grandfather Kolya
(Natasha's father, Masha's and Julia's grandfather) died. Julia went to
Moscow to say farewell to him from all of us and got into a bit of a trouble
because her Russian documents were not current. To everyone's relief
she got back fine in the end.
There were bright spots too. We celebrated both
Katya's and Lizka's birthdays. Katya's favorite joke now is making people to
guess how old she is and laughing merrily when they guess wrongly that she
"must be four".
And, of course, there is the Christmas excitement.
Although Katya knows that the "real" (i.e. Orthodox) Christmas is still
a week ahead, she is taking full advantage of the holiday spirit and the
numerous new presents.
Katya's physical condition is not very strong now, but still
much better than what it was a month ago.
She gets tired easily and sometimes complains about headaches.
After getting off steroids she retained a decent appetite, but
stopped walking unassisted.
However Katya's mood is still good and her will is as strong as
ever. She watches lots of movies (more than before), listens to
books and stories, plays with toys and sometimes with other
children. A few times a week she goes out.
It may be for an occasional walk in a stroller, a visit to the
toy store, a swimming pool, to a cafe for a quick cappuccino or Children's
museum in Portland.
We wish you all a very happy New Year! We hope that the New
Year be better than the previous one.
Saturday 12/31-Sunday 1/1. Happy New
Good news -- we've got the latest blood test results and they
showed further improvement of liver functions (ALT 252, AST 126, INR 1.2,
APTT 37.5). So during the last week, when Katya was only on Tarceva,
the enzymes kept going down steadily. This means that most likely it was
Thalidomide that caused the liver toxicity. We will try restarting
Gleevec next week. But first we will see how radiation goes.
When everybody started talking that the New Year will come tonight,
Katya refused to believe the New Year was for real. She kept saying that it
is still 6 days till the New Year (confusing it with the Orthodox
Christmas which is on January 7).
This sceptical attitude changed when
Katya watched the play
written by Anya and Marina Zakharevich with Julia's help.
In the play two house elfs
(Anya and Marina) tried to steal
Santa's (Ilya Zakharevich)
very big present for Katya ("a famous girl who is very good and
who takes her medicine extremely well"). A good
Faun (Mitka) and
helped to save the day. In the end everyone was happy
especially Katya, who got to
sit with Santa and even hold
While talking to Santa Katya shared with him her secret:
"You know why I drink medicine so well? Because I want to be well so
much. Well, I mean so that God cured me..."
Speaking about her future plans Katya explained that even though
she wants to be a nun (and a ballerina in her free time, of course), she
would really like to go to a monastery because the rules there are much
stricter than in a convent. But, since she is a girl, she cannot be a monk...
Katya was happy and in good spirits during the New Year festivities.
She went to bed only at around 5:00 in the morning and at 9:30 was awake and
ready to go to church. There she was also quite active and well-behaved.
Monday, January 2, 2006
In the morning Sharon, Katya's teacher from the Little French School
came to visit. Katya showed Sharon her beautiful jewelry and Chrismas
Then Katya decided to finish up the "healthy" pie left over from
the New Year's
celebration (it was made with filo dough and fruit juice instead of sugar --
absolutely delicious if you've been wondering).
After the third helping,
Arkasha got worried that Katya might burst. To this she replied:
"Don't you know that I am a little glutton, i.e. one
who keeps eating after having enough, and so I will never burst?"
Arkasha said that in this case she might have hard time in a convent after
becoming a nun. But Katya is not easily baffled:
"Well, then I will be a ballerina -- there
are fat ballerinas for sure; at least I've seen a
fat mouse-ballerina in a movie!"
In the evening there was the second performance
of the New Year play in in Julia's house.
This time the play became interactive since Katya remembered
what was going to happen and tried to warn the Snow-girl
about plans of the treacherous house-elfs.
Tuesday, January 3, 2006
Today Katya got the first session of radiation therapy.
Katya was edgy at the beginning and was worried that the
mask might be hot (as it was when it was first molded
during the preliminary session).
Because of some technical problem (one of the five treatment fields
was being blocked by a metal part of the equipment), the procedure
took 45 minutes, much longer than planned. To help Katya
be still and quiet, Masha watched her on
a monitor and talked to her over an intercom from the control room.
After the session, Katya demanded to get a complete account of
what was being done to her and with what purpose.
(If you, like Katya, want to learn more about 3D conformal radiation therapy
in pediatric neuro-oncology
read, for example,
this article .)
Vera, Ilya and Marina went home in the afternoon.
Katya already misses them. After Arkasha came
to play his usual role of a "bad cop" in the evening medicine
taking play, Katya told Masha:
"I like Ilya more than Arkasha -- Arkasha is
always strict and Ilya is often strict, but sometimes he becomes a
Wednesday, January 4, 2006
Around midnight Katya woke up and started vomiting.
She threw up all food and medications
she had last evening.
She vomited every time we tried giving her water to drink.
This lasted for several hours
during which we also noticed that Katya was having
It is rather common for brain tumor patients on
radiation therapy to develop severe nausea
caused by swelling of the tumor cells hit
by X-rays. The swelling sometimes produces
additional symptoms which later subside.
But usually such reaction occurs
after two-three weeks of radiation. Katya's
response after just one session is extremely
A possible explanation may be that her tumor
is very large. Therefore even a small swelling may
cause increase of symptoms.
Katya's case is also
unique in that she has been heavily pretreated by
drugs which may have radiosensitized
the tumor (i.e. made it more susceptible to radiation).
In the morning, after we discussed the situation
with Dr. Nicholson (Katya's oncologist) and Dr. Bradshaw
(her pediatrician), we gave her a high dose (4mg) of Decadron
to help control swelling and reduce the symptoms.
Soon she became very aggressive and started making
such as to let her sit naked on the ground of the
parking lot near the radiation clinic.
Only after a bitter fight and heavy bargaining
did she agreed to lie down for the second radiation session.
This time everything went according to the plan and
all five beams were used.
Back at home Katya, at first, was completely uncooperative.
But when we managed to give her a homeopathic calming remedy,
she gave in and started eating and taking drugs.
To our great relief she had no nausea tonight.
Thanks to Decadron, Katya managed to swallow everything without problems.
Her speech has also become more intelligible.
Shortly after midnight, relaxed, content and very tired Katya went to bed.
For all of us this was one of the most difficult days so far.
Thursday, January 5, 2006
When Katya woke up at 11:00 (it was her longest
sleep for the last couple of weeks) she was calm and in
a relatively good mood. Our mood improved accordingly.
On the way to radiation, Katya asked to go to Alton Baker Park.
There everyone enjoyed some fresh air while Katya was feeding the birds.
Katya hates radiation so much
that she asked
to take "the very worst book" along to be read during
the session. (This dubious honor has been awarded to
a story by H.C.Andersen
The Storm Shakes the Shield
The session had to be halted in the middle.
Katya called for Masha and asked when they
were going to sedate her. She explained that she
does not like to feel the mask on her face.
After radiation Katya went to Tugman park and swung
with Masha till Masha got dizzy.
Then they returned home on foot with Katya in her stroller.
Along the way she fell asleep and had a good nap.
Katya did not have nausea or headaches today.
However, her speech is sometimes unintelligible and
she still has difficulties with chewing and swallowing.
She also notices this: "Mama when will we go to the dentist's?
I need to go there very soon, because some of
my teeth are getting lazy."
We kept the same level of Decadron as yesterday.
If problems which chewing and speaking do not go away,
the amount of steroids (which Anya appropriately calls asteroids)
will have to be increased.
Friday, January 6, 2006
Katya's speech and jaw control improved compared to the last
two days, so we kept the level of Decadron unchanged.
Soon after waking up Katya said that she is very sad
because she is missing her grandma Lyusya and grandpa Zhenya.
She remained in this depressive state for the rest of the day.
It was a welcome change from her aggressive mode -- at least
it was much easier to go on with our medical routine.
On the way to radiation Katya asked Masha very seriously:
"Mama, please tell me one more time what exactly is wrong with me
and how are these little rays going to help?"
Masha explained her again about the little nub (komochek)
in Katya's head and how the radiation and drugs are expected to work.
Katya listened attentively and said nothing, but her mood has not
At the radiation clinic, as soon as the first beam was turned on,
Katya started wiggling and waving her hand indicating great discomfort.
The session was halted and when the mask was taken off
Katya commanded: Turn this nasty music off!
They turned the music off and Masha continued telling
Katya some story over the intercom. At the beginning of the second beam,
Katya again waves and twists desperately.
The procedure is stopped, the mask is lifted, and Katya says to Masha:
"And you too shut up!" The session continues in complete
silence. The third beam is started and Katya does it again.
"I need to scratch my chin!" she declares.
In the evening everybody went to church for Christmas mass and feast
(Russian Orthodox Christmas is celebrated on January 7).
Katya was quiet and somber during the service and fell asleep very soon.
Saturday, January 7, 2006
After returning home from church at 1 am, Katya woke up hungry and
stayed up (eating occasionally) till 6 am in the morning.
Katya stayed home all day, since there is no radiation on weekends.
She was in a
better mood than yesterday.
In the evening the family got together to celebrate Christmas.
Katya was very excited to finally
open the presents that have been
sitting under the Christmas tree for a long time.
Among other things
she got a new Barbie doll, Holland Princess,
a piglet Olivia game (of which Katya decided to keep only
the cards and asked the rest to be thrown out),
but the clear favorite was the beautiful
hand-made doll ,
made by Katya's friend Franka from Italy.
Katya decided to call the doll Elizabeth
and the doll's little doll was named Franka.
Katya enjoyed her presents and played a lot with
her new toys and with everyone in the house.
When Brad Shelton stopped by with his dog Cleo,
Katya made sure that Brad got a present too.
When Katya found out that Masha went to bed for a quick nap,
Katya demanded to wake her up. When nobody obeyed her,
she stuck a finger into her nose and started turning and twisting
it saying "If mother does not come right away, blood will rush from my
nose!" We knew that she really meant what she said, so Masha was
summoned down and joined the medicine-giving battle.
We received yet another present today: the latest blood test results showed
that the liver function is almost back to normal levels.
Sunday, January 8, 2006
We hoped it would be an easy day with no radiation nervousness
and pleasant signs of yesterday's Christmas celebration still
abound. But, alas, Katya woke up in her aggressive, Decadron-induced
state and started the day by sending everyone out of the house.
At church she got rather violent and Sasha had to take her away.
Despite her progressing deficiencies, Katya finds
ever more elaborate ways to remind people around her
who the boss is.
Instead of just making numerous conditions
before agreeing to take medicine (or to dress, eat, go to bed, etc.),
as she had been doing for a while, now she makes us guess what
these conditions are. She may say, for example
"I will do this with two conditions, one starts with letter P,
and another is to watch a movie, but I will not tell you which one."
If we cannot guess soon enough, Katya gets upset, but still
obstinately persists without offering any hint. It does not
matter that such bullheadedness might make things worse for Katya,
say, by keeping her hungry or, as it was today, by preventing
her from visiting a museum exhibition of Chinese and Japanese art
that she likes so much.
Obviously, Katya has more will-power than all of us combined.
If only we could find a way to use it for a better cause.
On a positive side, Katya's current aggressive state is
less violent than when she was first put
on Decadron after the shunt surgery in November.
Monday, January 9, 2006
There were no signs of aggressive behavior today and everything was going
well until the evening, when Katya refused to eat or take medicine and became
passive and irresponsive.
She did not want to deal with anyone in the house. When Arkasha was
called in to help Katya be more agreeable, she did not protest or
try to run away. Instead, she said quietly:
"Arkasha, Mama and Papa can no longer handle me.
Please take me to the doctor and ask him to feed me through tubes and
give medicine via shots.
(She knows that this is being done to sick people
who cannot swallow.)"
When Arkasha replied that the doctor's office is closed for tonight,
"But I cannot wait till tomorrow! Surely there should be
someone out there, in the whole world, who knows how to do shots
and feed through tubes! Please call the hospital and ask them. I was there
at night - there is always someone there. Only ask them to let my mama
and papa go with me!" After a brief pause she added
in a subdued voice: "But they would have to stay in an adjacent room.
They cannot be in the same room with me, there will be these dangerous
little beams in my room."
Shortly after that Katya switched to her thoughtful mode and became
again the sweet and daring girl she normally is
(when she is good, she is very, very good!).
She started eating and at the same time had an insightful conversation
with Arkasha about life, love, and other sophisticated matters.
Here are some excerpts:
- - The doctor who helps me the most is the one who strokes my head
[i.e. the osteopathic doctor].
But my head often gets dizzy after that. And also he is very strict
and does not like when I am late.
- - Do you know who I love most of all in the second place?
- Who? [We all know that the first place belongs to God and Anya used
to be the runner-up, but nothing is permanent ... ]
- Saint Catherine! And after her?
- All Saints! And after them - Father David.
- And what about Anya?
- I love Anya very much. She is next.
- - Oh my head, my silly head! (Claps on her head and laughs
Why are you imagining things that I did not ask you to imagine?
- What do you mean?
- It shows me the film about hobbits with the dragon and other bad
things [Makes a scary face.] And my head knows that I don't like
them! And now it imagines a scary scene from Fantasia. Oh, and now it
shows me the funny part with centaurs and Pegasus families.
[Laughs and then suddenly becomes serious.]
- Why is that your head always wants to do things on its own?
Why can't it always be obedient?
- - I don't like it when mother and father kiss on the mouth
- Well, they love each other...
- I don't mind if they kiss, I just don't like seeing it. I have a
funny feeling when I see it.
Tuesday, January 10, 2006
Katya woke up at 5 am and crawled under her parents' bed.
After playing there for an hour she commanded to wake Anya up and ask
her to look for Katya.
When Sasha tried to give her her medicine, Katya asked to remove the icons
because they distract her.
Still other distractions remained and Katya asked to go downstairs. But there
were more icons, so they went into the bathroom and turned off the lights.
There were no more distractions, but Katya was scared of complete darkness.
Finally, they went to the bottom of the flight of stairs leading to the
garage and completed the procedure on the last step facing the door.
At some point during this ordeal Sasha had to hold Katya's hands tight to
prevent her from kicking him (she was crying "Give me back to
me!"). For that he was given penance. He had to say the magic phrase "I
am sorry, I am sorry, I am sorry, please, forgive me!" a hundred times.
(Later in the day he had to say it 103 more times to amend for some other
During radiation Katya said "I will lie still on the table,
but I want everyone here to be silent. "
When she kept her promise during the first round,
Masha praised Katya. As soon as the second round started, Katya
interrupted the procedure in great distress.
Masha and the technicians rushed in. When the mask was lifted,
Katya said angrily: "I told you to be absolutely quiet!"
It looks like even the radiologists who, as one might think, can hardly be
surprised, are impressed by Katya.
Back at home Katya took all medications
and ate well. (By the way, the second round of Decadron did not
produce craving for junk food as it happened the first time.)
For example, today she ate whole wheat pasta, chicken, chicken broth,
buckwheat sereal, apricots, apples, oranges and drank plenty of milk.
In the very end of the day, however, Katya got tired of being good
and refused to take the second portion of Koraku.
Arkasha had to be called in, and Sasha, while talking to him on the phone,
asked him "to bring a doctor" to give Katya Koraku by a shot.
The moment Arkasha walked in, Katya drank the medicine and
looked up at him triumphantly. Seeing that he is alone, she asked
half dissapointedly, half mischievously: "And where is your doctor?"
Today we started giving Katya Gleevec again (along with Zofran to prevent
Wednesday, January 11, 2006
On the way to the osteopathic doctor Katya got angry at Sasha, because he ate
a piece of her orange (which she refused to eat just a moment ago),
and asked him to "give it back right away!"
When Sasha responded that he could not give it back, since he had already
swallowed it, Katya said "Mama, take a knife, cut his stomach and get the
When they arrived at the doctor's office, Katya was still mad at Sasha and
Masha and sent them out.
But when they left, she became very cooperative and obedient (of course she
realized that there was no point in making conditions because the
doctor does not understand Russian and her English
is not sophisticated enough for her elaborate demands).
When later in the evening Arkasha asked Katya why she was
angry at her parents, she said "because they offended me."
"How?" "I don't remember, but this does not matter now. This was not
me, this was Tantrum (Kapriz)!" (A nasty creature that sometimes
temporarily takes over Katya and some other good girls and makes them
look as if they are bad.)
Katya said she had an OK day today, but not too good, because
she had to do these little rays.
-What don't you like about them? I can't speak and it is hard
to breathe. It is very sad that the rays have to be done every day
except for the holidays.
In the evening, while doing picture cube puzzles made after
Russian fairy tales, Katya was retelling Arkasha the story of
Alenushka and her brother Ivanushka.
On hearing how little Ivanushka disobeyed his sister, drank
from the goat's hoof full of water, and turned into a kid, Arkasha asked
- And do you obey your older sister, Katya?
- I don't have to. I cannot turn into anyone because I don't even know
what a hoof looks like - the book did not have a picture of it!
Thursday, January 12, 2006
In the morning Katya declared that she will eat and take medicine only
after Arkasha comes and finishes the remaining picture cube puzzles with her.
When she phoned and Julia said that Arkasha is still asleep, Katya
did not believe her and was convinced only after the following conversation:
K: Are you sure that he is asleep?
K: How do you know?
J: I see him?
K: And where is he sleeping?
J: In our bed.
K: Under which blanket, a blue one?
J: Yes, under the blue one.
K: Well, then ask him to come to me as soon as he wakes up.
When they were done with the little cube puzzles and took the morning
medicine (Katya took all six pills with some water and food
all by herself just as she had promised), Katya wanted to do some
abstract puzzles with geometric shapes
and talk about relatives:
K: It is simply unbelievable, how many Anyas are around here: my
sister, Dasha's mother, Nyusya is also really Anya, and even Father David's
daughter Hannah is also Anya in Russian!
A: You know, my grandmother was also Anya!
K: Oh, yes, I completely forgot! Both my mother's grandmothers
were Anyas too! Suddenly continues in a hushed voice:
You know that my mother made this cake? It is very good, but you know
what? A: What?
K: It has some sugar!!!
A: I think that a little bit of sugar will not hurt you. You take
your medicine so well.
K:   No, I think that my mother is simply too kind
After a pause: And my father is also too kind.
Suddenly Katya looks up and pronounces: And you are kind,
but not too much! Then she beams as if remembering something
My grandfather Zhenya will come on Sunday! He is very, very kind!
You know, he has three things in common with Tolya [Tolya Pekelny,
Katya's big friend]:
First, they look alike; second, they both like to bring me presents;
and third, their favorite thing in the world is to play with me.
Katya behaved very well during radiation, and for the first time
it was done without interruptions. (And it took just five minutes.
Thank God, it can be done here in Eugene! If she had to be sedated,
we would need to go to Portland.) Probably she is getting used to it.
Still she closely monitors the behavior of everyone around. For instance,
after the session she checked if her parents truly
disliked the tale that Masha was reading to her. (This was still
the same Andersen's story The Storm Shakes the Shield.)
Friday, January 13, 2006
Before going to bed yesterday, Katya asked Sasha to read her
Tale of Tsar Saltan and fell asleep while he was in the middle.
At 4:00 in the morning she came into her parents' bedroom, woke up Sasha and
scolded him: "You have not finished reading the tale to me."
Sasha wanted to start closer to the end than where he
had stopped, but it is impossible to fool Katya. She caught him right away
and made him go to the right page.
When Sasha finished reading, Katya said with satisfaction: "Now we can
have some more sleep."
Katya invited Mitka to accompany her to radiation, but he
had to wear a funny purple top hat. The radiologists gave Katya
a present for her exemplary behavior and to mark the end of the first two
weeks of the treatment.
After radiation Katya returned to Lizka's house to play.
Katya was playing a common girl (Simply me, as she put it),
and Lizka was a doctor who gave Katya some poisonous pills.
The doctor wanted to sedate her and keep her for himself, because he loved
her and Katya did not share his feelings.
But the police arrived right after she fell into a sopor,
and the doctor had to flee. She was transfered to a monastery where the monks
kept her in a transparent tent. One day a young prince (Lizka) came by,
saw Katya, fell in love, kissed her, and raised her from her sleep. And
she fell for the prince too.
Before getting married, however, Katya had to go to a radiation session,
to help her overcome the harmful effects of the pills.
The prince temporarily turned into a radiologist,
Katya lied down on a makeshift table with her face covered by a mask
made from tissue, and Lizka was moving a stick over her making an
unpleasant noise. When Katya was cured, everybody was
invited to the wedding where Katya and the prince danced beautifully.
In the evening Katya watched a
Cirque du Soleil show and enjoyed it immensely.
Then we celebrated "Old" New Year's eve. Katya got a "healthy"
(made of organic whole wheat dough) pizza and, as a special treat, rolls
from the pizza dough with cinnamon and raisins, but no sugar.
She could not believe her luck and
even shared one roll with Masha and Sasha to show them how sweet this
roll was. Katya was very happy. It was a great day for everyone!
Saturday, January 14, 2006
After returning home from the "Old" New Year celebration at Lizka's house,
Katya took melatonin and immediately fell asleep on the couch.
At 3:30am she woke up in her bed and loudly protested that she
had been moved without her permission.
Masha had to move her back to the couch and turn on "Sleeping Beauty"
which induced Katya to sleep again. But in an hour she woke up
and agreed to go back to bed only after forcing Masha to accept
two conditions. They were:
to bake more sugar-free cinnamon raisin rolls and to make soap bubbles.
This lack of sleep is probably due to Decadron. Since the vomiting and
nausea stopped, we will begin decreasing Decadron level gradually.
Today we went from 4 to 3 mg per day.
Sasha did not like the idea of making bubbles at home. But it was
raining, and so he went outside to ask this naughty rain to stop for a while.
To this Katya immediately reacted:
" Mama, do you know how funny papa is?
He went out to ask the rain to stop. As if the rain would listen!"
Masha decided to be "mischievous" and made some bubbles inside the house
without telling Sasha. Katya was delighted (and of course, later told Sasha
Katya thinks that her father is very absent-minded
(of course, Katya herself almost never forgets things).
When Sasha told her about the next big holiday (Theophany/Epiphany which in
Russian Orthodox Church is celebrated on January 19), Katya corrected him:
"Papa, how could you have forgotten that the next big holiday is going to be
tomorrow, when your father Zhenya comes!"
Indeed, Katya and all of us have been eagerly waiting for Zhenya to come.
We got the results of the latest blood test.
All counts are within the norm, except for
hemoglobin, which went up. This was quite unexpected and
is really good, since radiation therapy very often leads to
decreased hemoglobin levels and anemia.
Sunday, January 15, 2006
After demonstration exemplary behavior in church,
Katya went home and stationed herself at the door to wait for
grandpa Zhenya to arrive.
When he came in, Katya took his hand and gave him a tour of the house
with an emphasis on her presents and on icons and images of saints.
She was so excited that she walked a few steps unsupported.
In the evening she wanted to repeat her birthday feast for Zhenya,
but instead of the usual cake, she ordered a plate of Masha's sugar-free
cinnamon raisin rolls with one roll in the center for the candles.
Monday, January 16, 2006
On her way to radiation Katya said:
"I think, I will take off my mask once today."
She did so during the first round and, strangely enough,
was quite "justified" in her action,
because the technicians forgot to turn off the music in the room.
All evening Katya was playing with Zhenya who, still heavily jet-lagged,
already got seriously involved in the business of reading to Katya and giving
Tuesday, January 17, 2006
Today is two weeks since the radiation started.
During the session Katya behaved very well,
but on the way back she got upset: "Why did not they give me a
When Arkasha came to assist with administering Koraku,
Katya exploded: Why did you come? I told Papa not to invite you!
A: I came to help you take Koraku and also because I have not seen you
the whole day.
K: How silly you are! How can
it be the whole day if the day is not over yet! And now that you've seen me,
you may return to your home. But then Katya changed her mind and decided
to have a conversation about serious matters.
K: You know, this morning Mama forced
me to drink "strong water"!
[This is ordinary water that Katya usually
does not like to drink unless is needed for medical purposes, for example, to
make her stronger.]
I was so offended that for some time I even thought
that Mama does not love me anymore. After a pause.
You know what I did the first thing after I
was born? I crawled to Mama's breast to suck some milk, because her milk is
A: Do you remember that??
K: I don't, but Mama remembers.
K: Mama is ill today and she cannot kiss me.
A: And what about me? May I kiss you?
K: Are you not ill? No.
Even not contagious? No.
K: Well, then, I guess, you may.
K: You know, today we watched
"After the Rain on Thursday"
[One of Katya's favorite Russian children's movies.]
one and a half times. Why?
Mama left after the first half instead of watching it with
me till the end. So I had to summon her back and start from the very
A: But maybe your mother had some important things to do?
K: She wanted to take a shower, but she forgot that I did not
have a shower for several days and needed to go with her.
K Arkasha, I have a very serious problem.
A: What is it?
K: I hate taking medicine, but I want to get well very
A: So what can you do?
K: (Smiling) Now you see what I mean?
I've been thinking and thinking about this
problem, but still cannot think anything up!
(Sighs) Probably I'll have to drink
medicine for the time being.
After a while Katya decided to change into one of her fancy dresses.
K: Arkasha, tie up my dress.
A: I am not sure I know how to tie the lace.
K: I never thought that you were so stupid.
Wednesday, January 18, 2006
In the morning Katya, Masha and Sasha went to
Portland for a routine visit to Dr. Nicholson.
Dr. Nicholson praised Katya and said that she is doing really well.
He said he would prescribe Rapamycin, a
drug from our initial treatment plan.
Katya was supposed to start taking it in November,
but her liver problems prevented her from taking it then.
Katya's Decadron dosage was further reduced to 1.5 mg/day.
She is having an non-standard reaction to the steroid.
Despite her very good appetite, she somehow
managed to lose one pound since the beginning of radiation
(usually children on Decadron gain a lot of weight so that radiation masks
have to be remade several times).
Back at home Katya continued her study of Greek myths.
She knows so many myths and legends and remembers them so well and in so many
different versions, that she often sounds like a little literary scholar.
Frequently she would correct us when we mix up Theseus and Perseus
or Helen the Beautiful and Vasilisa the Wise.
When Tanya Beede, dressed like
Vasilisa the Wise,
a heroine of the Russian fairy tale
The Frog Princess,
came to visit, it soon became clear to Katya
that Vasilisa has a very tentative knowledge
of her family history. So Katya decided to educate her
and gave a presentation about various
Vasilisas, Marias, and Helens from Russian fairy tales,
and their captors, husbands and other relatives.
For instance, it turned out that Vasilisa's father in The Frog Princess
was the terrible Koshchej Immortal,
while in another tale she was a daughter of a wicked Sea King.
Katya finished the lecture by noticing that, while Greek myths sometimes
have similarities with fairy tales (she gave as an example
the myth about Perseus and Andromeda), in fairy tales the
gods never mess with the lives of the heroes - but this did happen
with Perseus whose Andromeda was taken from him by Bacchus.
After Tanya left, Katya was still in the literary critical mode.
She told Julia that, although she enjoys
her tales about Barnabe and Itsy-Betsy,
they are made up, whereas the myths and Bible stories are real.
Thursday, January 19, 2006
In the morning during a Theophany (Epiphany) service at church
Father David generously sprinkled Katya with holy water.
Katya was very happy and later said that she likes it when he is being
After the service Katya and her family had lunch with Father David's
family. During the meal Katya easily assembled an 80-piece jigsaw puzzle.
Puzzles is her current passion. Often now, in order to concentrate (or just
to win time) before Koraku or some other not so pleasant medicine, she
would ask to do a 30-piece puzzle (and would complete it in a couple of
When she learned that Lizka is going to participate in a math-a-ton at her
school, Katya asked us to give her math problems. Nobody knows how
this she learned this, but it turned out that Katya can easily
add and subtract numbers up to 20.
During radiation the doctors gave Katya a beautiful bouquet, for
she was a very good patient today. It is still too soon to
tell whether radiation is working on the tumor, but it is clear
that Katya's mental abilities are developing with full speed.
After Zhenya's arrival Katya's reading interests broadened.
Today they read 80 pages of Winnie the Pooh (in wonderful
Friday, January 20, 2006
Julia fell ill with a flu and she is taking some Chinese pills.
When Katya learned this, she invited Julia to her house (in a mask)
to teach her how to take Chinese medicine. Katya's lesson was based
on Koraku demonstration.
After dragging time for 40 minutes with rearranging toys,
making puzzles, and inviting spectators to come, Katya finally said to Julia:
"You see, the main thing is that if the medicine tastes bad, you have to
drink it in one gulp, like this. One, two, three, ready, set, go!"
And then, after
drinking Koraku, she added thoughtfully
"For some strange reasons, I can never do it in one gulp."
(The reason is that we increased the dose recently
and are giving Katya two little bottles instead of one,
but to avoid serious problems we make it look as if she is drinking one
bottle in two gulps. She is getting more and more suspicious, so it
is unclear for how much longer we will be able to pull this trick off.)
On her way to radiation clinic, Katya said that she will walk unsupported
and, indeed, made several steps completely on her own.
After radiation Masha went with Anya to a therapy session and
Julia took Katya home. In the car Katya was playing
with a silly little toy chicken who did not
know anything. The chicken would ask "What is a shower?" or
"What is a shadow?" and Katya would have to give an unambiguous
Suddenly in the middle of the game, Katya said:
"By the way, dear Julia, why have you stopped writing stories for me?
I like Greek heroes, but don't you think it is time for you
to bring me a new story about Barnabe or Itsy and Betsy?"
Julia took notice.
In the evening there was a talent show at the church.
Katya with Sasha sang the duet
of the Pretty Princess and the Stupid King "I don't care
for anything!" ("Nichego ya ni hochu!") from a famous
Russian animated movie about the Musicians of Bremen.
Katya was very convincing in her part of the Capricious Princess
and had huge success with the audience. Later Sasha with Anya
performed a Russian romance
("Utro tumannoe" ).
Katya liked it a lot.
All evening she was cheerful and in an elevated mood.
She tried to walk all the time.
Everybody noticed that she feels much better.
Saturday, January 21, 2006
Julia spent the day writing a new story about Katya and Barnabe.
In the afternoon after Lizka decorated it,
the book How Katya outsmarted the Bandit-Cat
When Katya learned the title of the new book, she asked:
"And did Katya really outsmart the cat-bandit?"
After Julia finished reading her the book, Katya demanded:
"Bring her the Penelope book!" (that is how the feminist Katya
now calls the book about Odysseus' travels).
While waiting for the book, Katya quizzed Julia for her
knowledge of Greek mythology: "Do you know what Penelope did when
Odysseus was away?" No, what?
(Triumphantly.) "She was tricking the suitors!"
Sunday, January 22, 2006
Father David and his family came for the annual house-blessing ceremony
and sprinkled generously the house and everyone present with holy water.
After a short service everyone set down for dinner, but for matushka
Esther this was a very short stop as she was soon summoned by Katya to
Winnie the Pooh cartoon with her.
We were amazed at the ease with which Katya translated the movie
for Esther and explained to her the differences between the Russian and
We have been under impression that during months of staying at home
Katya forgot whatever little English she knew,
and we did not even try to encourage her to talk directly to
doctors and other non-Russian speakers she had to deal with.
And it turns out now that all that time she could, but simply
did not want to use English. Apparently Katya likes Esther and did not
want her to miss the humor of this great animation.
Monday, January 23, 2006
In the morning, soon after taking Gleevec and Tarceva,
Katya vomited. As Masha put it, "Katya threw up $150."
Indeed, since our insurance company has recently refused
to pay for Tarceva (on the same basis as Gleevec months
ago - that these drugs are not officially approved for brain
tumors), we pay for all the experimental drugs out of pocket.
We simply would not be able to do anyting without the generous donations
to Katya's fund and the people and organizations who help
us on a daily basis.
We want to express our gratitude to all of you!
Radiology clinic personnel collected a bag of toys for Katya
to reward her very good behavior
under "little rays."
Indeed, Katya has been very good during radiation
lately. Perhaps it is because she is getting used to it,
but also maybe she feels better and believes that the treatment
is helping her. For indeed, we see daily improvements in
her overall conditions. For example, today Katya's left
eye moved a little bit, as well as the left corner of her mouth.
For the first time in months, Katya asked to go back to school.
If things continue to be as they are now, we may indeed take
her there some time soon.
Today we added one more drug, Rapamycin (Rapamune), to Katya's regimen.
Its job is to target yet another tumor signalling pathway (mTOR).
Rapamycin is a tricky drug
which requires very careful administration.
Luckily Katya, even though not very excited about her new medicine,
does not mind taking it.
To help keeping Katya's lymphocytes levels up,
we have also started giving her PSK, an immune supporting extract
from the medicinal mushroom Coriolus versicolor.
In Japan, PSK is an approved anti-cancer drug with decades of research
behind it. However, in the US it is barely known and sold only
by a tiny company JHS
Natural Products in a very special town called Eugene, Oregon.
The busy day was capped off with one of Katya's favorite things,
Tuesday, January 24, 2006
We started Katya's day with Zofran and
she did not throw up.
Decadron has been further reduced to 1 mg/day.
This may be the reason why the number of hours Katya sleeps at
night goes up, whereas her appetite is going down.
Yesterday Katya complained about stomach ache and today her
stomach is even more bloated and she is crying a lot.
Since this started before we gave her
Rapamycin for the first time, something else is responsible for this
symptom. Also Katya looks very tired today.
We will take her to the pediatrician for a check tomorrow.
At the radiation clinic, the radiologist examined Katya
and was surprised to see that despite some loss of hair,
there is no sign of balding. Katya was pleased with
doctor's surprise. She obviously takes pride in baffling doctors.
After the radiation Katya went to the playground. She walked all the way
from the car, but did not stay long since all the structures she wanted to
use were very dirty because of the rain.
Katya's reading has expanded a bit.
After internalizing all the Greek myths (her latest source
was the classical book by N.A.Kun) she got immersed in
Byliny, a cycle of medieval Russian heroic poems.
Some of them are similar to famous Europeans legends and
quite popular with modern Russian children.
But Katya is especially interested in rather unorthodox tales such as
"Alesha Popovich and Tugarin Zmeevich" and
"Dobrynya Nikitich and Alyosha Popovich"
Koraku remains the most difficult medicine to give Katya.
She insists on following an ever more complicated protocol
according to which everyone in the house has to be present
to witness how unhappy Katya is; she works herself into tears
(today she could not to do that, so she asked to bring her
artificial tear drops), then presents a series of conditions (like assembling
puzzles, watching videos, bringing special toys, singing a sad song, etc).
Then when she is ready, she asks everyone except Masha and Sasha to
close their eyes and starts counting in all the languages she knows,
for example, "raz, dva, tri, then one, two, thhhhhhhhree; un, deux,
trois, on ni va; ready, set, go." Finally it comes to "Lord have
mercy, Lord, have mercy, Lord have mercy, amen" and
then Katya notices that someone opened her eyes and everything
begins again, etc.
Still, she is very sweet now.
Wednesday, January 25, 2006
In the morning Katya went to Dr. Bradshaw to check her
stomach which was VERY bloated.
X-ray showed that her stomach is full of gases in the upper part and has
lots of stool.
Katya cried bitterly while the doctor was taking a picture of her tummy,
not because it was painful or traumatic, but because
Sasha had to leave to take Anya somewhere.
From the pediatrician Katya went to her
osteopathic doctor who also worked a lot on her "blocked" stomach.
Adrienne Borg (our naturopath and nutritionist) thinks that
this bloating could be caused by one of Katya's homeopathic medicines, so
we are going to suspend it.
To stimulate Katya's stomach, we gave her some blackberry (she ate two dozen),
apples, cranberry fruit drink (mors), etc.
Katya is not especially fond of fruit and berries, but somehow she
recognized the need. With a newly bought juicer, we hope that she will
start having more of these.
After that Katya had stool (many times in fact)
and felt better.
Katya's other symptoms keep getting better too.
Lately she has been doing exercises for her right (lazy)
hand with a squashy ball, and today she could move fingers
on this hand, the ability that has been lost since October.
The whole afternoon Katya and Lizka played
with their favorite plastic toys (knights, queens, princesses, etc) and the
railroad. Lizka reports that Katya is very
cheerful the whole day and laughs a lot.
Lizka also said that Katya told her
that she prefers the little rays to drugs, especially to Koraku.
It is a mystery to us, why she dislikes Koraku so much. It does not taste
that bad at all.
When Arkasha arrived to assist with
Koraku, Katya assembled everyone except Anya. Anya
was excused because she had too much homework. Katya said
"Poor Anya is so-o-o busy - she has so much homework and now she has to
practice everyday for her opera performance next week."
It has been long since Katya took sincere pity on someone else - a clear
indication that she is feeling better. Also she, like all of us, is looking
forward to seeing Anya perform with Eugene Opera in
Hansel and Gretel .
Then Katya started her usual routine: "Arkasha close your eyes, Liza
close your eyes, is anyone else here? Where is Zhenya? Call him up here!"
But then, instead of dragging feet and putting the moment of truth
off by making conditions, she said: "I can't think of any good conditions
now, so let's do it." And then her usual "one, two, three;
une, deux, trois; Lord have mercy, ... , amen."
She almost drank it that moment, but then stopped and said
laughingly "I somehow cannot cry now, so those of you with the closed
eyes pretend that I am crying!"
It almost looked as if she was enjoying the whole process. She was
definitely enjoying herself.
Thursday, January 26, 2006
Today Katya visited Gersh, the son of Boris and Ira Botvinnik.
This was the fist visit in months outside of her family/church circle
and she and little Gersh had wonderful time
Despite continuing diarrhea, Katya's stomach is much better today
and she is in a very cheerful mood.
Friday, January 27, 2006
Before radiation Katya and Masha went for a walk under the rain and picked
Lizka from school.
Katya has been extremely well behaved on radiation the whole week. She never
had her mask taken off, neither did she cry once. Still she wants us
to think that she is scared and suffering.
With her stomach working normally and radiation-free weekend ahead, Katya
was laughing a lot today. When Masha "threatened" to give her twenty Koraku
bottles if she does not behave,
Katya could not stop laughing for several minutes.
After watching Disney's Alladin, Katya and Lizka
made a thorough analysis of the movie and concluded that, while Genie
is the funniest character,
the best one is Princess Jasmin, because she
is brave, bright, and smart, and not just pretty as most
princesses are. What a pair of true feminists in making!
Katya approved the list of names we can use to address her.
The names she is especially proud of are:
a little chocolate glutton, a vanilla ice-cream cone with
sparkles and stracciatella chocolate.
Saturday, January 28, 2006
Despite some nervousness during the blood test in the morning,
Katya was in a jolly good mood for the rest of the day and
laughed a lot when Anya and Lizka made silly jokes.
Giving Koraku to Katya becomes one of the favorite games for the whole
family. We are striving to invent new tricks for speeding up
the process and Katya cracks them one after another.
The last two days Masha was pretending that her finger hurts very much
from pressing the open Koraku bottle for too long
and Katya would take the medicine faster out of compassion to her mother.
But today Katya would be fooled no more.
When Masha started whining, Katya just looked at her and said
"Mama, don't cry like a baby, you have to learn to be
In the evening when it was time to take the second portion
of Koraku (which should be given at least 30 minutes after food)
and Masha was not home, Katya pulled out a piece of dark flaxseed
bread she hid earlier and started nibbling on it.
Then she asked for raspberries, then for blackberries (which we were
happy to give her, since she rarely wants to eat berries). When,
after giving her seconds twice, Julia called Katya a little glutton
(the name she is proud of), Katya laughed heartily and and said
"No, I just don't want to take Koraku until Mama comes back!"
Sunday, January 29, 2006
In church today Katya was a good girl,
both calm and cheerful.
Later, Sasha Kashirin, Vanda and their dog Fifi
came to visit Katya at home. She was very glad
to see them after a long while.
In the evening Katya's stomach started hurting and
she was crying bitterly until Arkasha brought
whole wheat tortillas she was craving for.
After that she immediately got happy.
Today Katya was proudly showing everyone that she can move her right
hand up and reach her forehead. And when people noticed that
she can also move fingers on this hand, she would just beam with joy.
(And when tricky Arkasha asked whether she can make a fist,
she gingerly made a fist with her left hand instead.)
We stopped giving Katya Decadron today.
Monday, January 30, 2006
When the rain stopped for a while, Katya went to
Alton Baker park to walk and play.
She walked unsupported there too.
Anya and Lizka taught Katya to play war, a popular
children's card game. Today she was playing it with Zhenya
for two hours and was very excited to learn the Russian name of
the game, pianitsa (drunkard) and the folksy
slang of Russian card players.
During one of today's Koraku game rounds Sasha was away,
and so Katya asked Zhenya: "And you, do you know how to feel sorry
Luckily Zhenya knew and was able to play Sasha's role.
Katya has a new favorite toy - a beany-baby hedgehog.
Katya told us today that Koraku is his favorite wine
and his skin got its brownish color because of Koraku.
Monday, February 20, 2006
A lot was happening during the last three weeks and we simply were not able
to keep up with all the events. We will gradually bring everything up to
date (and will post many pictures). For now, here is a brief summary.
In the beginning of February we had a minor crisis. Soon after we started
giving Katya Rapamycin, its level in her blood got dangerously high and we
had to stop the drug. However, probably because of it, Katya developed
canker-type sores in her mouth and lost her appetite. At some point she
almost completely stopped eating and drinking and we were on the verge of
putting her on artificial feeding.
Luckily, using creative dieting (based on fortified milk and some
previously excluded foods), help from the doctors and Katya's good
will, we managed to avoid this extremely unpleasant procedure. Katya
was sustained on about 500-600 calories per day and 5-6 cups of fluids.
Everyone was very worried about her except for Katya herself. She kept a
rather cheerful mood during this difficult time and was quite agreeable
even during radiation and drug taking.
Eventually Rapamycin level went down to norm, sores healed, and Katya started
eating a bit better (but still much less than we think she needs).
There were other, not so worrisome events during these weeks.
In the first week of February we celebrated Anya's becoming a teenager.
Immediately after this she sang in Hansel and Gretel opera at the Hult
center. This was a great success both among Anya's family and friends and the
general Eugene public.
A week ago we marked six months since Katya's diagnosis, a modest and,
at the same time, an important milestone. The next day Katya had her last
radiation session. As she walked unsupported
from the parking lot to the treatment room, the whole staff of the
radiation clinic greeted her with a burst of applause comparable with
Anya's success at the Opera house.
Last week Zhenya (Katya's grandfather) left for Moscow. During the month
that he was visiting he saw a dramatic improvement in Katya's mood and
And then, there was the Valentine's day with its outpouring of love and
On Saturday, February 18, Katya with Masha, Sasha and Anya went on a pilgrimage.
They are going to revisit the Orthodox monasteries in Arizona
(Saint Anthony's in Florence and St. Paisius' in Safford)
they have been to in August, right after Katya's diagnosis.
Katya kept saying how happy she was there and how much she would want to go
back. She was thrilled when she learned that her dream is going to come true
We are all so happy that Katya feels better now. Symptomatically, her
condition is similar to what it was in the end of October: she can walk,
move her right hand and even lift some light objects with it. Still,
we are well aware that positive radiation effects are usually only
temporary and we need to keep attacking the tumor with all available
means. We continue giving Katya drugs targeting various tumor
functions. Also we are trying to get access to new drugs
showing promise in fighting gliomas.
Saturday, Feb 18 - Tuesday, February 21, 2006
Katya, Anya, Masha and Sasha had a wonderful trip to
two Orthodox monasteries in Arizona, the same ones they visited in
August, right after Katya's diagnosis.
This was one of Katya's most frequently expressed wishes and
she was excited and in a very good mood throughout the whole
After flying to Phoenix, they
rented a car and went
St. Paisius' convent in Safford.
During the two days there Katya
played, and simply had great time.
During a very long Sunday service, after noticing that the nuns were standing,
Katya stood up and remained standing through the good part of the two-hour
After the communion she was very surprised when instead
of wine she was given holy water. Also she was surprised to find out that
the priest was the only male who permanently lived in the convent.
After spending good time with the abbess Mother Michaila
and getting a bagfull of presents
Katya and the family left for
St. Anthony's monastery in Florence (Arizona, not Italy).
(In fact, Katya wanted to go to Lizka's first and was rather disappointed
when she learned that it is not possible.)
As before Katya was very impressed
with the grounds and the
churches (both from inside and outside).
Before leaving the monastery Katya and her companions had visits with two
elder (starets) Paisius, the abbot, and elder Efraim, the founder of
Back at home, when Katya was telling about the trip to Lizka, Arkasha and
Julia, we asked her if she liked St. Anthony's churches almost like the
Italian ones. "Oh, no!" - exclaimed Katya - "Much more than that! Churches
in Italy are beautiful, but they are very old. And the churches at the
monastery are also beautiful, but much newer and nothing has been broken
Wednesday, February 22, 2006
Anya's fried Amy with her mother Michele came from Boston to visit.
Katya and Lizka played with the big girls.
Thursday, February 23, 2006
Katya played with Amy, Anya, and
Lizka. The girls watched "Singin' in the rain", Anya's current favorite.
After the movie Katya said started retelling the film to Arkasha, but
then sighed: "It's impossible!" "A: What is impossible?" "This movie is so
funny, but I cannot explain why it is funny, you have to watch it yourself."
"Oh, so you liked it?" "I liked it very much. It could've become one
of my favorites, but unfortunately there was one thing I hate -
they were kissing on the mouth."
But then, all of sudden, Katya started smiling again.
"A: Why are you laughing?" "K: You know, there is this nurse,
Fred, who is very good at taking blood from me for tests.
Also I have a friend, Brad (Brad Shelton, Sasha's department head)
who says that he can ride an unicycle, but I think he is joking."
Friday, February 24, 2006
Katya went to Mardi Gras at and Lizka's school
and just loved it. It was so much fun, and Katya got lots of awards,
without having to eat all this unhealthy food.
Speaking of food. Katya's appetite is gradually coming back.
The process of eating is taking her a lot of time, but she
stopped losing weight and regained interest in some kinds of food.
Saturday, February 25, 2006
Brad Shelton came with his dog Cleo (but without his
unicycle) to take Katya for a walk.
Katya decided to take her bike and rode it quite skillfully.
She was happily chasing Masha trying to run her down.
Brad promised to come again - and with his unicycle this time.
Katya was very impressed when he confirmed that he can ride it.
She said she knew people can ride bicycles, tricycles and quadricycles,
but thought that unicycle were just a joke.
Sunday, February 26, 2006
Representatives of the Make-a-Wish foundation came to interview Katya
about her wishes. Katya told them that she loves Greek and Roman myths
and she would like to visit Italy again. But because it is not possible
now for her to leave the country, she decided that she
wants to go to Disneyland and Sea World with her family
and with Lizka.
Tuesday, February 28, 2006
In the morning Katya had a visit of her physical therapist.
She was doing exercises
much more enthusiastically
and the doctor was very impressed with her progress.
In the evening the whole family with Tolya and Sonya Pekelny
got together to celebrate Maslenitsa (a Russian version
of Mardi Gras feast).
Katya told everyone about her impressions about the trip to the monasteries.
"The male monastery is very strict: the boys and girls have to stay in
separate guest houses and eat separately. But it is so-o-o-o beautiful and
has lots of flowers, palm trees, cacti, etc.
Also they found magic water there when nobody believed they would.
On the other hand they have no animals there except cats, but in women's
monastery there were goats and more. Also there is a donkey
whose name was Eeyore (Ia-ia) who defends goats
from coyotes and plays with baby goats (they can climb him and slide
down). Also all monks there were women and only the priest is a man.
And they allowed Sasha eat together with us.
After dinner Tolya showed Katya some card tricks and she was delighted.
Thursday, March 2, 2006
Katya got lots of presents during this and the previous week
and so Masha convinced her to put some of the old toys away.
Still she was very surprised when Katya readily agreed and
said: "Mama, first of all put away all the Barbies?"
"Why?" "I don't like them anymore. I want to play with
more interesting toys."
And what are these - French queens, kings, knights etc.
Friday, March 3, 2006
Katya had her first MRI after radiation.
We don't have an official report yet, but the scans clearly
show that the tumor decreased in size in all directions.
In the longest diameter it got shorter just a little bit,
but in the other two directions it shrunk by about 30%.
When we told Katya that the "nasty nub" in her head got
smaller because of the "little beams", she laughed at our
silliness. "Have you forgotten," she asked, "that I stopped doing beams
long time ago?" And she raised her right hand indicating that
she keeps getting better without radiation.
Saturday, March 4, 2006
Brad Shelton came with a long awaited visit to show Katya his unicycle.
When Katya saw the unicycle, she said she did not believe that anyone
could ride it. But then Brad mounted it started riding. Katya got so excited
that she was jumping up and down all the while (with both feet up in the air!).
Together they were quite a show! When, after the event, Masha asked Katya
whether she sees now that Brad was telling the truth, Katya responded in
a subdued voice "yes, I believe it now".
Brad came with his dog Cleo, Katya's big friend. Cleo did not feel well and
at some point vomited. Katya, who knows all too well both about being sick
and about vomiting, felt very sympathetic and tried to sooth her.
Sunday, March 5, 2006
Today was Sunday of Forgiveness, the last day before Orthodox great lent,
and there was a special service at church. Katya came to church
after a three week break and everyone was amazed at the changes in her
appearance and behavior. She was glad to be back and smiled happily when
people expressed surprise at her regained ability to move freely.
She made a point of going to the communion all on her own and made sure
that she crossed herself with her right hand (which she could hardly move
three weeks ago).
In the evening to celebrate the last day of Maslenitsa
(and Masha and Sasha's 15th wedding anniversary) the family
went to a Japanese restaurant. Katya
ate very well and completely on her own using chops sticks.
When Lizka got ice cream for desert (the last chance before the seven week
lent), Katya laughed heartily watching as Lizka was getting sillier and
sillier because of all this sugar. In the end, silly Lizka did not even notice
that Katya took her coat.
Monday, March 6, 2006
One of Katya's Christmas presents was a batch of butterfly eggs
and during the last two months she was observing with great interest their
metamorphosis to larva (caterpillar), pupa, and finally to an adult butterfly.
Today the story came to a conclusion, when the butterflies were released into
the garden. After that Katya spent some time in the garden making soap
bubbles (probably because they are also colorful like the butterflies).
Fresh air and excitement helped Katya to work up good appetite and
she ate three bowls of buckwheat in the afternoon.
She also started having a new drink - a "powerful green potion" made with a
mixture of juices of celery, broccoli, green grass, carrots, and
a "magic" powder. This potion is so very strong and magical that it can help
the lazy right hand to get normal again.
Tuesday, March 7, 2006
Long before the start of the radiation treatment we were thinking of taking
Katya on a fun trip if her symptoms improve and she is able to enjoy it.
Now this time has arrived and the plans finally took shape.
What Katya really wanted was to go back to Italy which she fell in
love with last summer, but knowing that she has to stay in the US, she settled
for another round of Southern California attractions (Disneyland, Sea World,
San Diego Zoo, etc.) Katya wants to share the fun with Lizka, so
both families are going on a trip in the end of March.
of Oregon will pay for some of Katya's family expenses
- the airfare
from Eugene to Los Angeles and for the Disneyland visit.
Latest blood test showed a slight increase in the Rapamycin level
despite the fact that we decreased the dose a little bit last week.
All other counts are normal except for a lowered CO2
which may be related to Katya's frequent diarrheas.
Wednesday, March 8, 2006
In the morning Katya went to Portland for a regular visit to Dr.
Nicholson. He was happy to see how well Katya is doing.
After looking at the last MRI scans he said that
the tumor decreased in volume by at least 40%.
This is very good, especially because in Katya's case the shrinkage is
accompanied by a significant symptoms improvement.
But of course, we need to keep attacking the tumor in order not
to allow it to re-grow. We are planning to add new drugs to Katya's regimen
soon. Most likely we will start with Tamoxifen, an estrogen blocker with
Before going home from the hospital Katya spent some time in
one of her favorite places in Portland.
Changes in Katya's condition affected even one of the oldest
and most established routines - the ritual of taking Koraku.
Now she drinks it without much ado and does not demand that everyone
present close their eyes or feel sorry for her.
She still likes inventing conditions before taking medicine though,
but they are also changing. A condition that was quite popular lately is
that Katya hides somewhere and we look for her. She is very good at
hiding, but usually it is easy to find her simply because she would
start giggling when someone is near.
Thursday, March 9, 2006
In the afternoon Katya went with Masha to pick
Lizka from school, but fell soundly asleep and would not wake up
despite all the noise around her.
In the evening, for the first time in months, Katya came to the
Akathist reading at Kleshchevs'. Everyone was very happy to see her.
The children played hide-and-seek. Katya was hiding well
and did not even giggle when people tried to find her.
Friday, March 10, 2006
The nature prepared a rare treat for us today - the
whole area was covered with snow.
The schools were closed and the children all around town
were throwing snowballs and making snowmen.
Katya also wanted to play in the snow,
but unfortunately this did not work out.
As the number of drugs began climbing back to the pre-radiation level,
Katya has again started her old dragging tactics which eat many hours
of time and leave everyone frustrated.
In the afternoon, however, her resistance evaporated,
when Julia came and asked whether Katya wants to hear a story about
Barnabe. "Yes", she said, "you started telling me a story yesterday and then
I fell asleep.
If you continue from where you stopped, I will
take the medicine." Apparently, Julia remembered where she stopped, since
Katya took all medications without even noticing
while listening to the story.
Saturday, March 11, 2006
In the afternoon, Katya came to Lizka's
to play. At first they were
drawing and then started
dressing-up: Katya was a
fancy princess and Lizka was her a cook
and later a slave-dancer.
Listening to a new Julia's story about Barnabe,
Katya ate a good helping of salmon (which she called clown fish
because of its reddish color). In the end she said "I ate so much of it
today, that I won't have it tomorrow at all."
To this Sasha responded: "spit out whatever you have in your mouth
immediately." Katya readily obliged and then said:
"OK, now I will be able to eat it tomorrow."
Then Katya started telling stories herself.
First she reminded us how Masha fainted ("or did she lose her consciousness,
like the soldiers who did not find the dead Christ in the cave?") during
Katya's first MRI. "By the way," she added wistfully "it was before I began
competing with Barnabe. I could still eat sugar and so they gave me
two chocolate chips cookies!"
Then, with lots of
detail and excitement she retold us the the movie,
which she saw this morning.
Sunday, March 12, 2006
This was the first Sunday of Lent, the
Sunday of Orthodoxy, commemorating the victory of icons over
iconoclasts. Together with the whole congregation, Katya participated in the
procession of the Holy Icons. She was riding in her new stroller,
but on returning to church got out and started walking around
all on her own.
Back at home there was a surprise for Katya - Tosha Perlin came to
visit from Corvallis with her two sons and beautiful horse Trixy.
The girls were riding Trixy
and having a great time.
Then Brad Shelton came with Cleo and Katya decided to have some
fun with Brad too.
The merrymaking continued in the house.
The children played and
watched "Little Princess", Katya's current favorite movie,
while the adults enterntained themselves at an impromptu dinner.
When, quite late into the night, everybody suddenly began getting ready to
go home, Katya got quite upset. She asked indignantly: "What, even Julia and
Lizka are leaving?"
Monday, March 13, 2006
In the morning Katya was so "difficult" that in the end
Masha scolded her and Katya sent Masha away.
She said that for the rest of the day only Anya will be allowed to
give her medicine. As the result of this arrangement,
in the afternoon Katya and Anya went to Lizka's and Masha stayed home.
Tuesday, March 14, 2006
A new blood test showed a lowered white blood count.
This may be an indication that the Rapamycin level is increasing
again, but the Rapamycin results are not yet ready.
When Katya was told that Tolya Pekelny is going to come,
she started looking everywhere for sweets that
may still be found in her sugar-free house. She said
that when Tolya comes "I am going to give him all these sweet
things so that he becomes silly and makes me laugh."
When in the evening Julia came to help with Koraku,
Katya told her that she (Julia) is no longer the only poet in the family
and proudly recited her first poem:
Katerina, Katerina, ty odeta kak Mal'vina!
[Catherine, Catherine, you are dressed like Colombine!]
Then she said that Julia's assignment today is not to tell a new story, but
to read a book about a Hampster. However, the book was nowhere to be found,
so Julia started telling a story about Barnabe and a hampster and
thus got Katya's attention (and Koraku in her system):
"When Barnabe's parents bought him a hampster,"
started Julia, "Barnabe decided to shave him."
At that moment Masha and Sasha exclaimed "Oh, how awful!",
and Katya scolded them for interrupting and added that she does not see
anything wrong with this idea, don't people, after all shave sheep all the
"So Barnabe got his father's razor, covered the hampster with shaving cream,
"Stop!" - said Katya - "I can't listen to it anymore -- this is too
Tell me straigh away [prosto i yasno) how this all ended!"
Julia, trying to find a way out, continued:
"Well, Paulina [Barnabe's older sister]
entered the bathroom in the nick of time and exlaimed: `Oh,
Barnabe, you are such a nice boy to give your hampster a bath! Let me help
you...' Later their father was looking for his razor and found it in
Barnabe's bathroom, he locked it just in case.
When Barnabe realized that he cannot shave the hampster, he decided to
paint its gorgeous white fur with permanent blue color."
Katya was satisfied with such a resolution of the conflict.
Wednesday, March 15, 2006
Today Masha had an appointment with Adrienne Borg (our naturopath
and nutritionist). When Katya found out that Masha was planning
to go alone, she was very upset: "How dare you go to my favorite
doctor without me! I need to see her too, have you forgotten that I
have problems with my stomach?" In the end Katya prevailed and
Adrienne saw her (and her stomach) too.
Thursday, March 16, 2006
Today was Julia's birthday and Katya with Lizka prepared
a surprise for her - they staged a play based on Rapunzel
tale. Lizka was a prince and Katya played Rapunzel.
At some point, when the Prince is climbing up the tower holding to
Rapunzel's hair, Katya declares: "And now I am the Witch who cut
Rapunzel's braids" and sends Lizka tumbling down the stairs. When
she reaches the bottom, Katya adds: "And, by the way,
keep in mind, that from now on you are a blind Prince!"
This was not the only Katya's surprise.
She played piano for Julia and
also demonstrated that she can now lift both her
Katya said that she is ready to resume her ballet classes.
Instead of sweets, Katya sometimes has popcorn now. Masha
asked her today: "Isn't it true that popcorn tastes better than candies?"
Katya: "Are you kidding, mama? I have not tried candies for so
long that I don't even remember how they taste."
Masha combed Mitka's long and curly hair so that it was
sticking out in all directions. Everyone started laughing, but
Katya suppressed her smile and said reproachingly: "Mama you are
simply being mean to him!"
Friday, March 17, 2006
The most difficult part in the medicine-giving program these days
is to convince Katya to take pills. Recently she announced that,
because she is only five, she cannot swallow more than five pills
in one session (and the regimen calls for at least eight or nine
with her first meal alone).
Since some of the pills are quite small, Masha was giving her
several pills at once pretending that this was only one or two.
Today when Katya suspected that something was wrong, Masha
said "OK, let me take one away", but Katya objected: "Nothing doing
- don't you know that I need to take all of them in order to get
Julia promises Katya to tell her a story about Barnabe
if she takes medicine quickly.
Katya is trying to negotiate before committing:
"And will there be me in your story?" J.: "Of course, why not?"
K.(mournfully): "Because, recently mama told me two
Barnabe stories and I was not there to unmask his dirty doings!"
Saturday, March 18, 2006
In the afternoon Katya and Sasha walked to Lizka's.
When they returned they found out to Katya's great delight
that volunteers from the Make-a-Wish foundation prepared
a surprize going-away party for her to celebrate her
coming visit to Disneyland. One of the guests was a
"real princess" (not a Disney's one).
The princess told Katya that she made appointments for her with some
Disney princesses too.
The guests brought Katya a beautiful new dress,
wonderful toys, and even a
real photo camera to take pictures
during her travel.
Katya was very happy and excited and it looks like everyone
had great time.
Sunday, March 19 - Thursday, March 23, 2006
On Sunday morning Katya got up with nausea and running nose.
Here mood plummeted too and giving medicine and food became harder than
usual. Having cold for her is not good at all especially now
when her white blood counts are below norm.
Some other memebers of the family got cold too, so we were not certain
that the trip to Southern California is going to take place.
But things got better by Wednesday and we are going.
We will be gone for ten days till April 10 and we will update
the site when we come back. Wish us luck and good weather meanwhile.
Thursday, March 23 - Monday, April 3, 2006.
Make-A-Wish trip to Southern California
The place that Katya really wanted to visit was Italy
(because it is "terribly beautiful with ancient churches and a warm
sea without any sharks"). But when she realized that a trip to Italy now
is out of reach for medical reasons, she decided that the next best thing
would be to repeat the trip she made last summer, soon after returning
from Italy. In the end of February the family revisited Orthodox monasteries
in Arizona, and a new tour of Southern California attractions was
planned for the spring break.
This was a really great trip. Katya, Anya and Lizka enjoyed
every moment of it. The older members of the company had a good time
too. An added treat was that Laura and Sasha Giventals with their
children Emil, Alisa and the new son-in-law Michel could join us
for the Disneyland portion of the trip.
We will put details soon. Right now here is a brief report.
for photos from the trip.
The trip went almost without any problems. Katya behaved, ate and
took medicine reasonably well.
She did not mind taking her medicine in the parks or even on the rides.
- 3/23 A VIP-kind departure to the airport in a limo provided by
the Make-a-Wish Foundation.
Visit to the Toys and Doll Museum in LA.
- 3/34-3/25 The Disneyland and California Adventure parks.
This part of the trip was arranged by the Make-a-Wish foundation and
Katya was given a VIP treatment - immediate (i.e. bypassing all lines) access
to all rides, breakfast in the Goofy kitchen, private meeting with Snow White
at Walt Disney's office, etc.
Meeting princesses and other Disney characters.
Fun rides. Parade. Fireworks. Playing with friends and just having fun.
- 3/26 The Paul Getty museum - the closest one can get to being in
Italy without leaving the US.
According to our girls, this place was even more interesting than Disneyland.
Playing in the sand at the oceanside.
- 3/27 San Diego Wild Animal Park.
- 3/28 Sea World with its sharks, manatees, dolfins, and, of
Old town San Diego in the evening.
- 3/29 The remarkable San Diego Zoo.
- 3/30 The Sea World again.
- 3/31 Second visit to the Zoo.
- 4/1 Legoland.
- 4/2 Balboa park and its museums.
- 4/3 Fun at the ocean. Driving back to LA. Flight home.
At times the commercial pull of the entertainment industry
would prove too strong, and Katya would refuse to pass by
a souvenir shop without gettng a new toy. But eventually we managed to
contain this budding consumerism and turn her attention away
from cute but stuffed animals back to real (and much more cute) ones.
Katya made us worried though in a more direct way, when she started running
fever in the middle of the San Diego stay. Katya cannot take standard
fever-reducing drugs because of the other drugs she is taking, but
with the help of our wonderful medical advisors the fever was defeated.
Tuesday, April 4 - Friday, April 7, 2006
The trip home was uneventful (even no limo) and Katya was
glad to be back because her "animal toys were missing her and
she wanted to tell them about her trip".
She was doing well for a day and a half, but
then all of a sudden, while playing outside, she started trembling and
To our great relief it turned out to be due to quickly
rising temperature. The fever soon jumped to 102o (and later rose
to 103o) and, since we could not give Katya any standard flu/cold
medication, she was taken to the Sacred Heart Hospital in Eugene and given
an IV antibiotic infusion.
(It was not clear in the beginning whether the symptoms were due to a flu
or a bacterial infection, but later the consensus was that it was most likely
a stomach flu.)
After two days in the hospital, Katya's temperature went down
and she was discharged. She feels good now and the only problems
she still has are a diarrhea and low appetite (the latter though is
rather ours than her problem).
On Friday afternoon Katya was again happily running around house.
In the evening together with the rest of the family she
went to the Annunciation feast in Ella and Sasha Kleshchev's house.
Saturday, April 8, 2006
Today Katya felt strong enough to go for a walk (in her stroller) to
Lizka's and later to a Thai restaurant (one of her favorites) to
celebrate her grandma Natasha's birthday.
Sunday, April 9, 2006
In church today Katya was very active,
ran around a lot, and even went to Sunday school, where she decorated
a candle for the forthcoming Easter vigil.
Many people remarked that Katya looks better and stronger than
the last time they saw her three weeks ago.
There was a special guest at the service, Mother Michaila, the abbess of the
St. Paisius' convent in Arizona. Katya was very glad to see her
old friend again and to chat with her. Lizka decided, and even told other
children at church, that Mother Michaila came to Eugene specially to
(After all, with the special attention Katya is getting anywhere she
goes, this kind of thinking is hardly surprising.)
Monday, April 10, 2006
When last fall we learned about Nimotuzumab (Theraloc,
TheraCIM, or hR3), a new monoclonal antibody which
had promising results in brain tumor trials in Europe
with essentially no side effects, we started thinking about
trying to obtain it for Katya.
Despite the fact that the companies
producing and manufacturing this drug were willing to give
it to Katya for free, the bureaucratic obstacles we faced
trying to bring the medicine to the US looked unsurmountable.
(One of the most serious problems was that the drug
had Cuban-made ingredients and, in order to bring it here, we
had to create a small window in the embargo against Cuban goods.)
Finally, after a lot of dedicated work and concerted effort of many
remarkable and generous people (biomedical researchers, doctors, lawyers,
and just friends) in various places and countries, we obtained permissions
from two important government agencies (Department of Treasury and the FDA)
to import Nimotuzumab and give it to Katya.
Today Dr. Nicholson (Katya's neuro-oncologist)
called to say that he has received the medicine from Canada.
On Wednesday Katya will go to Portland to start the new treatment.
In the afternoon the weather was irresistibly nice and
Katya went for a walk in a park along Willamette river.
In the park she happily engaged in her favorite activities:
feeding ducks and geese and playing with a friend's dog.
Tuesday, April 11, 2006
Katya went to her osteopath who found her in a good shape overall,
but said that the energy was blocked at two levels.
In the afternoon Katya played in her back yard
when six deer came and began to eat their lilac
bushes. Katya and Sasha tried to chase them away, but
the shameless animals continued their meal not paying
any attention to the growling and stamping girl.
Wednesday, April 12, 2006
In the morning Katya went with Maria and Julia to Dr. Nicholson in Portland.
It was so early that in the car she asked "Mama, am I really
in the car or it is just a dream?"
Katya decided to go back to sleep, but the dawn was so gloriously pinkish
that she changed her mind exclaiming: "How is it possible to waste
time sleeping when it is so-o-o beautiful around!"
At OHSU Dr. Nicholson inspected Katya and said that her symptoms
improved a bit more during the last month. In particular
her left eye started moving away from the corner
and Katya is using it more. It does not necessarily mean that
the tumor is still shrinking, since the nerves that recover slowly.
Katya's next MRI is scheduled for this Friday, so we should
know more about the tumor in a few days.
From Dr. Nicholson's office Katya went to a special room to
have her first Nimotuzumab IV infusion. First she was given
some IV Benadryl to offset a potential allergic reaction during
the infusion. As a result Katya spent two and a half hours
in the treatment room. At first she was unhappy and
cried bitterly after several unsuccessful attempts to poke her vein.
But eventually she calmed down and even complimented a new
numbing ointment she was given so that the shots would not hurt too much.
Everything became just right when she and Maria
started watched the movie Chitty Chitty Bang Bang,
a great way to dry out watery eyes.
While they were watching, the results of Katya's blood test
arrived from the lab. All counts are within norm except for
slightly lowered hemoglobin and lymphacites.
From hospital Katya went to the Portland Children's Museum
and discovered there a magic room with luminescent walls and floor
which she has never seen there before.
Friday, April 14, 2006
Today Katya had her seventh MRI exam in eight months since the diagnosis.
Doing MRI has always been a tough job, not only because of
the nervousness and uncertainty surrounding the outcome, but also because it
takes the whole day to have Katya sedated, do the procedure, wake her up,
wait till she can be moved out and then watch her being dizzy and cranky
for the rest of the day. Since Katya is also not happy about this situation,
we decided to try to convince her to do MRI without sedation.
At first she was reluctant, but eventually agreed after we promised
to take her to a restaurant of her choice.
Our next task was to convince the radiologists, and we
were not sure whether it would be any easier.
However, Katya's reputation of a strong-willed girl helped us.
Her MRI technician said that he wouldn't agree to such a
request from parents of any other five-year-old, but with Katya it is
quite different, since when she says she is ready to do it without sedation, she
really means it. As a result, Katya heroically went through 50
minutes of a rather unpleasant and scary procedure.
Have no illusions - she was very tense and did not enjoy it at all.
Katya made sure we were well aware of that: she cried, made conditions,
etc, but lay still, and this was all that mattered.
After the MRI we all went to a Japanese restaurant (Katya's choice)
to celebrate Katya's heroic act.
Official MRI results will not be known for a few more days,
but our own analysis shows that the tumor has not changed
since the last MRI two months ago.
April 15-18, 2006
Katya is in a very good mood these days. As the weather
is getting better she spends a lot of time playing outside
in the back yard, at church, or in the parks. She herself
notices that her right leg and hand are regaining strength
and enjoys surprising us showing off every new little thing
she can do now. Still, she is very critical of her abilities and
if, say, someone tells Katya that it is amazing how well she can run, she
would respond: "oh, this is nothing; if you could only see me
running before I got sick - you would be really impressed!"
The only thing that makes Katya sad is that she cannot see Lizka
who is down with a bad bout of stomach flu. The girls really miss
each other and are praying that Lizka will get better and well
by the Easter eve.
We've got an official report of the last MRI.
It was surprisingly brief.
It was just stated there that
nothing had changed since the previous test.
Wednesday, April 19, 2006
Another trip to Portland for an antibody IV treatment.
The nurses had serious problems with poking Katya's veins.
Even when they managed to get inside the vein, the blood would not flow.
Luckily, the "Panda team" (the crew of the special pediatric emergency unit
who brought Katya to OHSU from Eugene in November for her shunt surgery) was
in the hospital at the moment and they were rushed in.
They used some sophisticated equipment (such as laser flash light to
illuminate veins from within) and managed to get the IV to work.
The poking hurt a lot and Katya was crying
bitterly, but still she was quite aware that all
these people causing her so much pain were trying to help her.
At some point she said with eyes full of tears looking upwards: "I know that
all these people love me very much and I love them too. But the God loves me
more than anyone else." And then she added
emphatically: "And I love him more than anyone else too."
On the way back to Eugene Katya was discussing some subtle philosophical
issues using examples from Greek mythology which she now knows better than
any of us. She said about Icarus
(the son of Daedalus): "He was such a naughty
boy who disobeyed his father and caused him a lot of suffering.
Still, I feel pity for him. Mama, how comes that
even those who behave badly you can like and feel pity for?"
Friday, April 21, 2006
With only two days left till Orthodox Easter,
Katya's favorite holiday, she is very seriously
preparing for it and tries to participate
in all activities of the Holy week.
In the afternoon Katya went to Kleshchevs' to decorate
Easter eggs with her friends and their parents.
Then everybody went to the lamentation service.
After the service Katya was not in a very good mood and
declared that yesterday she was Minotaur, today she is Medusa the Gorgon,
and tomorrow, if her mood improves, she is going to be "this mischievous
Greek god who stole Apollo's cows" (she meant Hermes, but forgot his
Last week we ran out of Koraku and the new shipment was delayed for
some reason. Everyone was nervous (including Katya who, however much she
enjoys giving us a hard time while taking the medicine, considers it an
integral part of her daily routine), but finally the shipment arrived
tonight. Even Katya was relieved and drank the evening portion without
dragging her feet.
Sunday, April 23, 2006
Happy Easter, everyone!
We wish you great happiness and joy.
We would like to thank you all again
for your love and support and for walking
along with us on this difficult path.
We love you too and Katya is very well aware that her
friends, old and new, are praying for her.
Wednesday, April 26, 2006
Another trip to Portland for Nimotuzumab treatment.
This time Katya had a very strong reaction to Benadryl
and became very angry and aggressive. It resembles her
behavior on a high dose of Decadron after the shunting surgery.
The nurses said it is known that Benadryl can sometimes
give such a strong reaction, but in their ward nobody has
seen it before. In order to poke Katya's veins the nurses had to hold her
down. It worked in the end, but next time we will try to persuade
the doctors to administer the antibody without Benadryl.
Friday, April 28
Katya went to a party Kleshchevs' on Friday and played very well with Dasha
and Andryusha (Lizka had fever again and could not come). When the big kids
went outside to jump on a trampoline, Katya wanted to go too. At first she
was jumping with Mitka, and than started doing it on her own. She was
very happy (and clearly surprised) with her success and kept jumping till
Saturday, April 29 - Saturday, May 6
This week was full of various social activities for Katya.
She payed visits to two of her little friends: Gersh Botvinnik, who turned
one year old on Tuesday, and Tanya Ostrik, who is just learning to crawl and
Katya was happy to give her lessons.
She also had dates with Dasha Tugman park and with Lizka on Saturday Market.
Lizka finally recovered from her flu and the girls could not have enough of
each other. They played and played inventing numerous new games and stories.
Since almost every medication or food item we give Katya has to be
accompanied by a reading her a book or telling a funny story, she became
quite sophisticated in her demands. Often she dictates the plot, the
characters, and sometimes, even the settings and the ending of the story.
On Wednesday the doctors in Portland
agreed to administer Nimotuzumab to Katya
without Benadryl and this made an enormous difference in her attitude.
She behaved well and was very nice despite the fact that the nurse had
to poke her vein five times to get the drug flowing. It was painful, but
Katya said she understood the nurse is trying to help her. When it was all
over she even thanked and praised the nurse who was touched very much by
After the treatment Katya, Masha and Julia
spent several hours in the beautiful
one of their favorite places in Portland.
Katya was eating quite well this week and even gained almost a pound,
but on Friday she started complaining about nausea and lost appetite again.
Sunday, May 7
In church Katya was not in a very good mood,
feeling nauseous and angry.
This changed when she went to visit Vitya and Natasha Ostriks
and their baby daughter Tanya. Playing with Tanya and her toys Katya
got happy and relaxed (she especially liked her rocking chair).
In the evening Anya returned home from a five-day Canada tour
she went to with her choir (Oregon Festival of Choirs).
Katya was very glad so see her back (and so was everybody else).
That evening we listened to Anya's excited account of the trip during which
her choir performed in railway stations, trains, ferries, cathedrals
and parliament buildings.
Monday, May 8
Katya started the day in the "sad" mood.
She even asked to read her the saddest story she knew -
H.C. Andersen's "Shadow". (When the story ended, Katya said
today it was even more sad than usual because
she felt pity even for the Shadow.)
When Natasha read Katya a book about a little lion who got lost,
Katya bust into tears:
"I remembered how I got lost last summer in Venice:
I was walking and walking and suddenly saw that my mother and father are
not here. Then I got surrounded by all these Italian people - they did not
understand me, but they wanted to help."
"So why are you crying now?" asked Natasha.
"Because, I remembered how sad I was then ... "
In the evening Sonya and Tolya came to play with Katya
and later Julia brought her some Chinese toys.
As the result, Katya requested a Chinese dinner:
she asked for a Teryake chicken with rice and
a story "about a Chinese boy who was born in China
and then went to England and his grandfather stayed in China".
Apparently good food and a good company helped to improve Katya's mood.
She started laughing and making jokes. This description of
her disobedient head shows both Katya's sense of humor and how cerebral
she really is: "My silly head knows very well that I don't like
this scary "Hobbit" movie [an animation that Katya saw several years ago],
it keeps showing it to me. Also I don't like
the last part of "Fantasia", when the Devil himself
appears. It is VERY scary, but my head cannot just forget it
and shows it to me when I don't ask!"
Tuesday, May 9
Today was a very good day with a really nice weather.
Masha took Katya for a walk and they went all the way to
Roosevelt Middle School (about 2 miles away) to surprise Anya
when she gets out of school.
While waiting for Anya at the bus stop, Katya and Masha
met Natasha (who was on a bus and got off when she saw Katya) and then Mitka
(who was passing on his bike).
In the early evening Katya suddenly got very tired
and went to bed quite early (around 7:30pm) without even
taking her evening medications. Hopefully this tiredness is
due to the hours she spent outside.
Wednesday, May 10
In the morning on her way to OHSU for the weekly antibody infusion,
Katya did not fall asleep in the car, as she usually does,
and demanded that Julia read her Aesop's fables.
On arrival to the hospital Katya was in a "difficult mood". She tried
to run away from the nurses before entering the treatment room (and almost
succeeded). When the IV was brought in, Katya threw tantrums, but calmed
down after the surprisingly successful first shot into her vein.
Heather, a volunteer harp player, was playing for Katya during the procedure.
Katya likes her music very much and when Heather is not there, Katya is
After the procedure Katya asked to go for a walk along the
Eastbank Willamette Esplanade in Portland.
This is a recently opened beautiful and delightfully tranquil area
in previously inaccessible part of downtown just next to I-5.
Katya's best moment on this walk was an encounter with a duck
family with charming furry ducklings.
On the way home Katya was in a much better mood.
She talked a lot about H.C.Andersen's tale "Shadow," and
in the end concluded:
"I don't know why, but I always take pity on bad guys as well as good ones."
Thursday, May 11
Today Masha promised to take Katya to Kleshchevs'
for the weekly
reading, but Katya took an
unexpectedly long nap in the afternoon and so Masha went alone.
When she woke up, she was very upset, Sasha had to
take her there anyway. Katya rode in the back of Sasha's bike
and got very happy. When they arrived, Katya played with Andryusha.
Then she got some pancakes. This was the most exciting part of the visit,
because those pancakes were "unhealthy": made of white flour and not
sugar-free. "You know," Katya said triumphantly afterwords, "those were
real pancakes, just like before my illness!"
In the evening Megan Dixon came to visit.
("It is unbelievable" - Katya summarized later -
"she is American, but speaks Russian just as the rest of us!")
They played and then
got some "healthy", but still delicious dessert that Masha made:
a yam pie with whipped cream and blackberries.
Katya was very happy and in a good mood.
Friday, May 12
The last few weeks Katya was having periods of nausea
(sometimes accompanied by diarrhea) that usually started two or three days
the antibody infusion and lasted for several days.
We are trying to find whether they are standard side effects of the drug
and control them with medications and homeopathy.
Oddly enough, these things do not bother Katya nearly as much as they
Trying to find some food that Katya would agree to eat, Masha made sushi,
once Katya's favorites, and invited Lizka and Co over.
To everyone's delight Katya, ate sushi (which turned out really,
really good) and was in a cheerful and philosophical state of mind.
For example, when playful guests almost broke a beautiful porcelain plate,
Katya said "Don't worry about the dish. External beauty is not that
important. Only the stuff that is inside you, in your heart, is
Today we marked nine months since Katya's diagnosis.
Saturday, May 13
Katya went to the Science Factory (Eugene's
Children's museum) with Sasha, Liza and Anya.
From there they went for a walk along the Willamette river.
It was such a beautiful day!
Then everybody went to Lizka's to paint pictures and to play.
Katya was baby Zeus and Arkasha was his father, Cronus
("you are my father in some sense", she said - "you are the father of
my second sister" (which is a literal translation of "cousin" from
Russian). Cronus swallowed all his children because he was told that
one of them would overthrow him. Zeus's mother substituted the baby
with a rock wrapped in swaddling clothes.
After being brought up by a divine goatin in a cave on the island of Crete,
Zeus came back home. With a help of an emetic potion he made
Cronus regurgitate the children he had swallowed.
Needless to say, this was an exciting game, especially when Cronus' children
led by Zeus attacked their "father".
We noticed some worsening of Katya's symptoms.
Her right hand became weaker again and does not go all the way up.
Also the range of motion of the left eye decreased again.
These are minor changes. They
may be caused by various reasons (for instance, they may be due to
a tumor swelling because of the cytotoxic activity of the antibody).
We are going to find out whether such effects have been observed with other
diffuse pontine glioma patients on Nimotuzumab.
Sunday, May 14
Today was Sasha's birthday and Katya was an active participant in all
the activities of the day.
She danced graciously when the guests arrived and ate dinner
in the garden.
She sang songs (not just "Happy birthday to you" in three languages, but
also some songs in the language that only Katya understands).
She played witches and hide-and-seek with Mitka and Arkasha and
got extremely excited when nobody could find her in the
thick bush she converted into an enchanted witch's hideaway.
With Lizka and Anya, Katya watched a Russian version of "Around the world
in 80 days" after Jules Verne's novel.
They laughed a lot at Fix's tricks and failures.
Katya helped Sasha blow his candles, but was not interested in his birthday
Before going to bed Katya declared that it is time for her to
start going to school again
Monday, May 15
In the morning Katya's physical therapist came and,
once again, Katya succeeded in having everything done her way.
In every game they played, Katya modified the rules and strictly
enforced them so that the doctor had no choice but to comply.
We noticed some worsening of Katya's symptoms. Her left eye
is not as movable as it was a few weeks ago and the right hand
is getting weaker. Still, these changes are minor and
we hope that they are due to tumor necrosis and not to
something else. Doctors who conducted Nimotuzumab trials in Germany
told us that many of their patients who responded to treatment had some
temporary worsening of symptoms.
Another worrying news came with the results of the latest blood test
which showed a sharply reduced platelets count. It is unclear what
may have caused such a decrease.
Wednesday, May 17
Another weekly trip to OHSU for the antibody infusion.
The nurse had difficulty getting the needle into Katya's vein.
After several failed attempts, the nurse left and Katya decided to
wait for the Panda emergency team. When they finally arrived and inspected
Katya's arms, they said that she has no veins left there
and suggested poking a vein in the foot.
Katya flatly (and very convincingly) refused. She just said that she would
rather go home than have the infusion through the foot.
"In this case, - one of the paramedics said, - I'll try doing it in the arm
and you may cry your head off, it won't matter". And cry Katya did, but
she calmed down after a while, and the paramedic succeeded.
(He later said to his partner "I can't believe I did it - such a tiny vein.)
Before the infusion, Katya had a visit with Dr. Nicholson.
He said that her left eye moves less than two weeks ago, and he
agreed that it may be due to tumor's response to treatment
(which would be a good news). He also noticed that Katya's mouth
is less asymmetric than it was, i.e. some symptoms did get better.
After the treatment Katya asked to go to Portland Chinese garden. It was
very beautiful there. She looked at flowers and sculptures and then ate some
On the way back Katya was "reading" fairy tales to Julia. She did her best
pretending that she was having difficulty making out this or that word, and
it did not matter to her that the book was in English and she was
"reading" it in Russian.
Thursday, May 18
Katya got tired in the early afternoon
and had to take a nap.
She woke up cranky and in a "negativistic" mood.
The situation changed when everybody went to
Kleshchevs' for the
With the perspective of jumping on trampoline in mind
Katya took her medications without much fuss
and then was jumping for a long time.
Saturday, May 20
Today Katya put up one of her most
fierce fights against taking medications.
We tried all the time-tested tools of persuasion,
coercion and negotiation but it was all in vain.
She adamantly resisted every attempt
to give her medications.
She played various time-dragging tricks or just
outright rejected the drugs.
In the evening in a desperate all-or-nothing move
Masha told Katya that she was going to stop giving
her medications. Katya nervously asked Masha
what would happen without the medications
and Masha told her what she thought would happen.
After thinking this information over, Katya
decided that it is in her interests to
start taking medicine and for the rest
of the day was quite agreeable.
In a reconciliatory move Katya watched
"Parents trap" with Anya and went to bed
happy and content.
Sunday, May 21
In church Katya was a very good girl
until the medication time arrived.
All of a sudden she switched back to the negative and hysterical
attitude she had for the large part of last week.
However, Masha managed to convince Katya to take a homeopathic
calming medicine. Within an hour, as if by magic,
Katya's behavior changed and she became her good old self.
Today Anya had two performances: a cello recital and
a chorus concert. Katya listened for a while and then
got tired and fell asleep.
In the evening Katya played the new storytelling game
with Masha and Anya.
The homeopathic magic pills still worked and there
were no problems with medications.
Tuesday, May 23
Today was the day that Katya was eagerly awaiting:
she went to the dentist's office for teeth cleaning.
We asked to check her teeth without X-rays (she had
enough radiation for this year) and the doctor said that even
without the X-ray it is clear that Katya has great teeth.
Katya was obviously pleased with this assessment (and later pointed
out that the doctor liked her teeth even though she did not
brush them every day as Masha insisted).
After the cleaning, Katya for a long time played
with the wonderful toy house and other toys in the office.
In the evening Katya and Anya
watched the musical "Funny Face" (with Audrey Hepburn
Fred Astaire) and loved every minute of it.
After the movie she played with Tolya Pekelny and
even allowed him to assist in giving medications.
The magical action of the homeopathy continues -
there were no serious problems with drugs or food for the last
couple of days.
Wednesday, May 24
Katya did not go to Portland for an infusion because
of some mess-up with the treatment schedule.
Dr. Nicholson promised to fix it soon.
Meanwhile we decided to order a port-a-cath for Katya.
This is a device for intravenous access for patients who need frequent
intravenous infusions. It consists of a port and an intravascular device
inserted in a vein and tunneled under the skin of the chest.
We finally uploaded photos from our springbreak trip to
Southern California. They are
here. (There are lots of pictures, so this page may
take a while to load. Please be patient.)
Thursday, May 25
In the afternoon Katya went with Masha to the Kleshchevs'
Akathist reading (Masha) and trampoline jumping (Katya).
But on arrival Katya decided to spend three hours (not) taking medicine,
and by the time she was done, everybody was so exhausted
that jumping was out of question.
Sunday, May 28
This morning Katya came to church in a very good mood.
When the time came to take her medicine, Katya decided to impress
the whole congregation and succeeded quite well: she took 12 pills in less
than six minutes, a new world record!
Of course she would not have been able to achieve this had she not had a
great coach, Anya.
Together they approached different people in church and
asked whether they thought that Katya can quickly swallow a
bunch of pills. Of course nobody believed she could,
so Katya had to show them. The hardest to convince were Deacon Steven
and little Stacy. It was very hard for Katya to understand
one-year-old Stacy, so Anya had to translate for her.
The situation changed dramatically in the afternoon when Katya
went to the baby shower for Lena and Ilia Binder.
There it took us two hours to give her Koraku. It turned out later that
Katya got very offended because Anya went for a walk with Masha
without saying goodbye to her.
Monday, May 29 (Memorial Day)
Father David's family (The Lubliners) invited the Polishchuks for a picnic
in the Dexter park. There was lots of good food and fun activities.
When everybody was engaged in a soccer match, Katya, not very
interested in the rough game, played in a nearby creek.
But when the time came for a
serious water fight,
Katya decided to get involved.
During the "drying out" break, Katya stole a camera
and took a picture of herself with a surprisingly good
Tuesday, May 30
Laura, Sasha and Emile Giventals, Katya's great friends and supporters,
came to visit from California.
They are staying at Lizka's house, so Katya went there in the evening.
The children played a very interesting game which they called "Trade", but
a more appropriate term would be Barter or Moneyless economy --
they traded things (like toys, books, cloth items, objects of arts,
etc.) and services (e.g. making food or playing music) in pursuit of
their individual goals.
Emile and Mitya played piano and harmonica,
and if Katya liked a piece, she would give them a pillow or
a hat or other useful things. Lizka traded her pictures and Anya was
exchanging pretty things for things necessary to build a house.
In the end Anya, Emile and Lizka got enough things for a dream house.
Katya collected many books and, while everybody else was busily arranging
their new houses, she asked Julia to read to her.
They read Vadim Levin's book "A Silly Horse".
One of the stories there was
"A Sad Song About a Little Elephant"
about a boy who, despite the many animals he has in
his forest, is very sad because he has no "merry little elephant".
Every child in our family knows this story. It is a very sad
story and some used to cry by the time it ended.
It is really hard not to take pity on this poor boy who
desperately needs a merry little elephant in his forest.
But Katya is not a usual child. She did not cry
out of compassion.
On the contrary, she exclaimed: "what a abominable [merzkij]
spoiled boy! He has many-many animals. They take care of him: a hedgehog
embroiders his shirt, a goat brings him milk, a fox sweeps the house with her
tail, a bee treats him with honey, a bird sings him songs, and a rabbit is
his friend and neighbor", she meticulously listed everything that was
mentioned in the book, "but he is ungrateful, he is not satisfied, he wants
something else that he does not have!"
Wednesday, May 31
The little mishap with the Nimotuzumab schedule
has been fixed (it took the help of
doctors from four countries and quite a bit of paperwork including a new FDA
approval) and today Katya went to OHSU for an antibody infusion.
First Dr. Nicholson checked her up and was very pleased with
He said that there is no need to do MRI before
12 weeks of the treatment.
When Katya went to the infusion room, there was a new nurse
who did not agree to poke the vein in the forearm as Katya demanded
and insisted on using the vein on the back of Katya's hand.
The nurse got into the vein from the first attempt, but
this was in vain since the IV would not start flowing.
Katya was crying at the top of her lungs all this time,
but she stopped right after the nurse said "OK, let's try the forearm," and,
lo and behold, it worked! The nurse was so impressed that she promised
next time to do exactly as Katya tells her.
"It looks like she knows better than anybody else what to do with her."
Katya did not make a sound during the second shot and the
infusion that followed.
Not that it hurt less - simply the fact that the procedure
was done her way made her happier.
After the infusion Katya had an appointment
with another set of doctors about her port-a-cath operation
scheduled for next week.
The surgeons wanted to see her to decide
where exactly the line should go and to make sure that it
does not interfere with Katya's shunt.
At first Katya did not even want to hear about the surgery.
She said that she would rather have her veins poked several times
during each treatment. But later Masha managed to convince Katya
that it would be a very good thing to do, since there will be
no more poking veins ever (even for MRI) and all procedures
requiring IV will be done much faster and without pain.
Before leaving OHSU took homeopathy and got very excited, started running
all over, hiding from M and Lora.
Later in the car got a bit moody -- "go away "gadyuka" - I mean go away
Lora!" Eventually got better.
Thursday, June 1
This morning Katya got up around 8:30, asked for two white pills,
swallowed them and then went back to bed.
The first words she said when she woke up several hours later
were "I took the morning pills some time ago, so I can eat right away.
So let's eat."
After breakfast two Sashas (Polishchuk and Givental)
took Katya, Lizka and Emile to the Science Factory,
Eugene's Children's Museum.
Out of the many great exhibits and shows
the kids especially liked "Sportsology",
a collection of hands-on challenges that test
your athletic abilities and at the same time
teach how the human body works.
Katya, whose strength and motoric skills
have been steadily improving lately,
enjoyed experimenting with her body and
investigating her strength, speed, endurance, reaction, balance and
In the evening Katya apparently got tired of being a good girl.
She made numerous unreasonable conditions for taking medications
and when the time for green juice arrived, the whole process ground to a
Arkasha was called in to help. But, since he was sick for
the last week and did not see Katya, he lost some of his "tough uncle"
abilities and Katya, instead of becoming scared of
the potential consequences of
Arkasha's arrival, started playing with him. So when Arkasha said that he
is going to take Katya to a doctor, Katya did not take this threat seriously.
It looks like he will have to work hard to gain back Katya's respect.
Friday, June 2
Katya woke up this morning saying "Today is Arkasha's birthday and
I will make a present for him. Also I will allow Arkasha to do
whatever he wants with me -
even to invite doctors to give me medicine with a shot if he has to.
Also I want him to help me drink the green juice."
Katya brought Arkasha two beautiful balloons and
also she wrote and illustrated for him (all by herself)
a fairy tale. If you cannot read
Russian, here is what it says (literally):
Once there lived Mother, Baby and Father.
Baby was swallowed by a weasel.
They rescued him and lived happily ever after.
As yet another present, Katya
raised her right hand
all the way up and even touched
her left ear over the top of her head.
This display of her returning strength made quite an impression on
the guests at the party. To add to their pleasure
Katya repeated the trick
several more times during the course of the evening.
Katya clearly enjoyed being at the center of attention.
She addressed the guests sitting on Arkasha's
shoulder and even agreed to be
given food in his hands.
Still, she was willing to share the limelight with
Sasha when he played the guitar
the guests listened.
Saturday, June 3
In the afternoon Katya and Anya went to the playground near Anya's former
school to meet (and play) with Emile and Lizka.
After Katya walked almost a mile, we thought she will be too tired
to do anything interesting at the playground. On the contrary, she
climbing up, sliding
down and even
going on the monkey bars.
When it started raining, everybody went to Lizka's house to
play more games.
Katya invented a red dance
and performed it with flair.
Then she entertained the public with a
toy accordion performance.
After fulfilling yesterday's promise about green juice,
Katya decided that today she was entitled to
a fight. When Masha tried to put some pressure on her, Katya
retorted: "Mama, what right do you have to command me?".
Sunday, June 4
Today Giventals left for home and,
as if sensing that the party is over,
Katya completely stopped to cooperate taking
In the morning she refused to take any pills at all (even the "small white
ones" with which she normally does not have problems).
Sasha threatened to take away some of Katya's toys and had to fulfill
the promise. It helped a little bit.
In the evening Arkasha resumed his role of the "tough uncle"
- without his "help" Katya would not even hear about green juice
Monday, June 5
In the afternoon Katya went for a bike ride with Sasha, Masha and Anya along
Later Katya told Arkasha:
"At first I was enjoying it [riding in a bike chair with Sasha],
but then I got scared because the river was so close and the path
was sooo narrow ("dorozhka takaya uzen'kaya")
and uneven. But you know what we did when I got scared? We went to
the Rose garden. Oh, it was sooo beautiful - there were roses of
all thinkable and unthinkable colors!"
A: And what did you do there?
K: We played hide-and-seek.
A: "Where did you hide?" K: Somewhere in the garden - they had very hard time
trying to find me. A: "Weren't you scared?"
K:. "A little, but I knew that they would find me in the end like in the
And Katya was right as usual.
Back at home, Katya had a conversation with Sasha about mathematics.
She was very surprised to find out (and expressed her amazement more than once)
that for every number there is always a larger number.
When Sasha told her that there is no largest number, Katya thought about
it for a while and then asserted "But God can find or make one if He wants."
What a great insight into the theory of infinite cardinals!
Also Katya discovered even and odd numbers, i.e. numbers that
"can be divided" [into two parts] and those that cannot. She was amused that
you can count them by skipping twos. Together with
Sasha she counted even numbers all the way up to 110 and then stumbled
because she did not know the right way to say 112 (she tried "one hundred ten
two", but dismissed it as not sounding right).
Tuesday, June 6
Today there was another big battle over taking medicine.
In the evening Arkasha was called in for help with green juice.
When the juice was finally given, Katya started making
impossible conditions for taking Koraku.
Arkasha threatened to take Katya with him
and deal with her "more seriously" away from her parents.
Katya shot back right away:
"But your were called to help to give me green juice, not Koraku!"
And then continued to make sure Arkasha knows that he has only
very limited rights with her:
"When I behave just badly, my parents never call
you. They call you only when I behave VERY badly."
When after this exchange Arkasha and Katya started boasting about
sharpness of their teeth, Katya presented her trump card:
"My teeth are definitely sharper than yours -- I had them
cleaned very recently!"
When the Koraku battle ended,
Arkasha read Katya fairy tales while
she provided sage commentaries
and shared her views about life.
In the middle of this intimate conversation
Arkasha asked Katya why she does not like green juice so
much, because it is not really so bad-tasting.
Katya replied: "Because it is made mostly of green vegetables and
grass and when I drink it I can only think about green things and
it is very boring." This was a very unusual answer which gives
a hope that by introducing some not so boring ingredients into the green
cocktail it can be made more "interesting" for Katya to drink.
Wednesday, June 7
Katya did not go to Portland today for her weekly Nimotuzumab infusion.
Instead, she will go there early in the morning tomorrow.
First, she will undergo a surgery to install a port-a-cath and
then, if everything goes OK, she will have her IV done through the port.
Thursday, June 8
In the morning Katya went to Portland with Sasha and Masha
to install a port-a-cath line.
First she had to do a blood test in the conventional way
to check coagulation and white blood count.
After poking Katya four times (they got into the vein each
time, but there was no flow) the nurse said
"I hope you are doing the port-a-cath surgery."
The doctors and nurses were very impressed seeing
how stoically Katya took her many pills and four pokes into
the vein. But when Katya quietly said goodbye to her parents before
being wheeled away to the operation room, some of them said that
they have never seen such a strong child in their practice.
The surgery went fine. When Katya woke up, she got a morphine shot
and did not feel any pain. After lunch she had a Nimotuzumab
infusion done through her new port. It went like a breeze.
From hospital Katya went to the Children's museum.
She was sitting in a stroller, but started running around
as soon as they entered the museum.
The Sesame Street exhibit that she wanted to see was gone, but
Katya agreed to stay and play in the
This was quite an experience!
On the way home Katya complained about pain in her chest, but
after taking a pain pill she felt better and did not feel any pain for the
rest of the day.
Katya arrived home in a very good mood and
took her medicine well.
Even the green juice was "yummy, yummy" (probably because Masha
changed some ingredients as Katya hinted a couple of days earlier).
In the evening, telling Julia about her surgery Katya boasted:
"You know, the doctor said that I was doing everything so well
as if I was eight! And this is exactly the age I want to be!"
J.: "Why, what is wrong with being five?"
K.: "Because, eight means I am already a big girl!"
(Probably meaning "bigger than Lizka")
Friday, June 9
Katya complained about pain in the chest.
After taking codeine, it got better.
It also hurts when she is trying to move her right hand.
We are giving her Arnika to speed up scar tissue healing.
We have started treating Katya with two new homeopathic compounds,
Ruta Graveolens and Calcarea Phosphorica.
This treatment is used for brain cancer patients in India (and more recently
in the US) with some documented
anecdotal success. Several children with pontine glioma have been on it
for several months and we decided to give it a try.
Katya had no problem with Ruta, but did not like the taste (or feel) of Cal Phos
and even tried to spit it out.
In the afternoon Katya played with Anya outside and
rode her new bike, a present from Tolya Pekelny.
Later she had dinner while watching Chaplin's film.
She eats well these days, but still sometimes has diarrhea.
Saturday, June 10
The big event of the day was a joint birthday party of
Nyusya Laptova (who turned 6) and Vanya Masakov (turned 5).
Katya made birthday cards herself and decorated them with her
The party was held in the
Orchard Point Park on Fern Ridge Lake.
Katya wanted to go there so much that she even agreed to
take her green juice before leaving home.
After drinking it she was very proud and at the same time quite
impressed with herself.
At the party, there was a clown who was making shapes out of balloons.
Katya asked him to make a balloon flower.
Katya had her own meal (pasta) and she ate it listening to Masha's
fairy tale (and not just a story!) about Masha's nose.
(At first Masha did even not have a nose, and Katya had a very cute
There was a playground at the park with a ship which
was hijacked by pirates (Anya and Katya).
Katya was quite a pirate - she even had one clip-earring and a ring.
After that the settings changed and Anya and Katya started dancing:
Anya was a lord and Katya a princess (tsarevna).
The birthday cake was very good-looking and sweet.
When children saw it, they got agitated and rushed towards
the cake. Katya tried to stop them and
ask whether they knew that one can get ill and even stupid
from too much sweets.
But most kids would not listen - they could not even
wait to get a piece on a plate with a fork, so they grabbed it
with their bare hands.
Only Lizka and Vanya ate just a little bit of the cake.
And of course, Katya had none at all.
Lena (Nyusya's mother) said that,
since Katya does not eat sugar,
she has something special for Katya.
Katya asked warily "is this something sweet?"
and Lena said "Not at all, absolutely not sweet!"
And she was right! She gave Katya a pink backpack, a
crown and a ring, all with absolutely no sugar.
Katya was very pleased and even more so when she was
asked to help opening the presents.
In the car on her way home, Katya announced
that she now has a new set of favorite colors.
Here it is:
Monday, June 12
After a little disagreement about green juice Katya
got slightly unhappy and asked to see a sad movie. Today she chose
"Romeo and Juliet"
by Zeffirelli. But after some funny scenes in the beginning she started
giggling and her mood changed. So, instead of watching the film
until the end, she just gave us highlights in a dramatic and solemn manner:
"Romeo thought that Juliet was dead and poisoned himself. When Juliet
woke up and saw that Romeo did not leave her a single drop of poison,
she got very upset.
She got upset... because she had to kill herself with a dagger!
And this is much more difficult than just drink some poison.
Yes, this is a very sad tale!"
Then she concluded forcefully: "And their parents were VERY sorry!"
Today we marked ten months since Katya's diagnosis.
Thursday, June 15
Katya turned five and a half today and
we decided to have a surprise "half-birthday" party for her.
At first Katya could not believe that she is not just five anymore,
but then she got used to the fact and declared that this is not a real
birthday. So it is OK to have presents and a cake, but not OK
to have candles and sing "Happy birthday to you!" Hard as she tried,
she could not hide her joy and happiness. She got a big flamingo
balloon and immediately ran outside to set it free. Then she got angry
that the guests were watching her flamingo flying overhead instead of paying
attention to Katya's right hand raised all the way up.
On her "real" birthday party six months ago Katya was not feeling well
and did not play with children and even did not want to look at the presents.
What a different party it was today! Katya carefully unwrapped every present
and made sure her guests saw how much she likes what they brought her.
For instance, after seeing a jigsaw puzzle with numbers on the pieces instead
of pictures, she exclaimed "Oh, I know - this is a mathematical game! How did
you guess, dear Julia, that I love mathematics so much? Father, can we play
it tonight, when the guests leave?"
Before going to bed Katya confessed: "This was such a wonderful day - can
you imagine, mama - ALL my friends came!"
Saturday, June 17
Katya was watching
"The Three Musketeers" and was giving a live commentary, so that the adults,
who are not so versed in the plot as she, would not be completely lost:
"Athos is always composed. No matter what happens, he never loses his calm.
He is my favorite musketeer. Porthos is very strong - because he eats a lot!
Aramis wants to be a priest, but right now he is silly - he does not know
that priests should not fight. The Queen is even more silly - she gave
her diamond thingies to an English prince, and did not even
think for a moment that the King might want to see them.
Pearls of Katya's wisdom this week:
- From a conversation with Julia:
"You can't even imagine how Mama and Papa
love me! They love me too much, I think. They even allow me ... one sweet
cream puff per day!"
However, Katya refused to eat whipped cream at the
half-birthday party on Thursday, saying that it was "way too sweet."
After visiting bathroom, Katya complained: "I have to much panties in my
bottom," but when Julia rushed to help, Katya stopped her and said: "Don't
worry, this is not important. What is in your heart matters most!"
New level of sophistication:
"I thought earlier that "Shadow" (H.C.Andersen's tale) is the saddest story
of all, but I was wrong. "Little Mermaid" is even more sad." Why?
"Because Shadow is bad from the beginning till the end and in "Little
Mermaid" the prince, who is good, is doing a very bad thing in the end."
Monday, June 19
Katya is complaining less about pain and is getting stronger physically.
This has some downside since her ability to resist taking medicine also
Today, after a big fight over Koraku and the green juice,
Arkasha was called in for reinforcement.
When he came, Katya asked him to watch "Lion King" with her
and agreed to take medicine after that.
Tuesday, June 20
Today Katya went to the playground near Evergreen school.
There, she quarreled with Masha and then with everyone else, and, as a result,
refused to take Koraku. She even tried to run away into the woods full of
poisoned oak. Only after Arkasha and Sonya came, the conflict was resolved.
Wednesday, June 21
During a regular trip to OHSU for infusion the nurses noticed
a sore on Katya's bottom which they thought may be a sign of
a staphylococcal infection. Because of Katya's recent surgery
this is more scary than it would normally be. For now, we will
treat the infection with ointments. If they don't help, we will
have to give her antibiotics.
From the hospital Katya went to the Portland Zoo
and then to Todai, her favorite Japanese restaurant.
Thursday, June 22
Akathist reading at Kleshchevs' everybody was
saying goodbye to Katya's friend Dasha and her parents
Anya and Gena. They are moving to Regina, Canada, and
we all are going to miss them very much.
Katya jumped on a trampoline a lot.
At first she was cross with the older kids
who did not pay much attention to Katya's requests.
Eventually, though, everybody learned to cooperate.
Saturday, June 24
In the morning Dasha came to play with Katya for the last time
before going away. Later Mitka joined them. Katya complained
that she did not see much of Mitka during the last several weeks
as he was busy with exams and finishing his school year.
Now Mitka came to make amends before going away for the summer at MIT.
They played very well together and Mitka helped giving Koraku.
In the evening they watched Chaplin's "Modern Times" laughing out loud
together. The day ended with sentimental goodbyes to Dasha and Mitka.
Wednesday, June 28
A trip to OHSU for infusion went fine.
The staphylococcal sores are healing well too.
After the procedures Katya decided to go to Todai for lunch
and from there to
Powell's City of Books, the best bookstore in the whole world.
There Katya and Anya read tons of books.
Thursday, June 29
While the adults were reading
at Kleshchevs', Katya with Anya, Lizka, Andryusha and Vanya jumped on the
trampoline and then played outside with Lego figures. The kids had a very
good time, but apparently not only they.
When we were putting Katya to bed we found on her 18 fresh mosquito bites.
Katya put on quite a bit of weight lately and is no longer at
the bottom of her age group. Her height is also
growing, but at a much slower pace.
Her symptoms are more or less stable.
Still we are concerned that her left eye and right hand are not getting
Probably, we are just getting edgy
facing an MRI exam in two weeks.
Friday, June 30
It was a very warm day. Katya spent many hours outside
playing with water and trying to wash Anya's hair in
Together with Lizka and Anya they played in the gazebo.
Katya was korolevna (a king's daughter), Lizka
was her brother and Anya was alternately their grandmother,
a lord, Katya's mother and father.
Then she was the girl that the prince (Lizka) later married.
The girls played with toy dishes, but their food was real and very good
- fresh blueberries and oatmeal.
Back at home, everyone watched an Eloise movie.
At first, Katya did not want Masha to watch with the girls, but then
took pity and allowed her to join them.
After the movie the girls played with Barbies.
They divided them so that
Katya had three Barbie girls and a boy (the Prince).
Anya had four girls, and Lizka had five girls.
(Katya has a LOT of Barbies as you know).
Out of the dozen Barbies, eight were
in love with the Prince. But he loved only one of Anya's Barbies,
the Swan-princess. However, she was not in love with him
because she was engaged with somebody else.
So the Prince died of unhappy love.
Katya was furious with Anya that she allowed this to
happen in the game.
Saturday, July 1
After eating a hearty breakfast, Katya realized that it was the
green juice time. She reacted immediately:
"Mama," she asked sweetly,
"can you believe that I am still a bit hungry?
Could you please make some fresh oatmeal for me?"
Katya ate a LOT today, but before going to bed
she vomited a large part of what she had in the afternoon
(together with most of her evening meds).
Katya recited Pushkin's "Song of Oleg"
("Kak nyne sbiraetsya veschij Oleg").
She memorized the poem while listening how Anya was reciting
it gettig ready for Julia's Russian history class.
We were all amazed and Katya clearly enjoyed the reaction
Then she put a white blanket around her head
and pretended to be "a little white cloud".
Everyone was supposed to tell
if they are friends of the cloud and what exactly
Julia turned out to be the moon, Lizka - rain, Arkasha - wind, and
Anya - a tree.
Sasha, Laura and Emil Givental came to spend the week of the Fourth of July
Together we are going on a camping trip to
in the heart of Oregon Cascades.
We will give a detailed account when we come back in a week.
Meanwhile, we wish you a very happy
4th of July, our dear friends!
Sunday, July 2
After watching "Madagascar," Katya tried
to explain to Arkasha how terribly funny this movie is.
"You are a very serious man, but even you will laugh out loud
when you watch it. It is my fifth funniest movie!" (The other four
are Chaplin's "Modern Times" and animated cartoon series
"Tom and Jerry",
"Nu Pogodi" ["Just you wait!" - Russian analog of Tom and Jerry featuring
Wolf chasing Hare] and "Pink Panther".
In the evening, everybody went to Lizka's house
for dinner and early 4th of July
fireworks (of course, fireworks are not allowed at a campground in the
middle of a forest).
We've bought a LOT of fireworks. Some of them were really spectacular,
at least as much as home use fireworks can be.
Katya really liked them and took
all her evening medications very quickly in order not
to be distracted from watching.
Masha had promised Katya a surprise in the evening, but
after the show began, Katya said with a big smile:
"You know Mama, this is not really a surprise!"
"Why," asked Masha, "don't you like it?"
"Well," Katya explained, "this is not
just a surprise, but a hundred and forty nine
surprises." (A hundred and forty nine is currently the
largest number Katya can confidently count to.)
After watching the display for an hour,
Katya became tired and a bit angry.
She complained that, because there were
so many fireworks, she could not enjoy them at the end
as much as in the beginning
(and, alas, we saved the best ones for the end).
This, however, did not spoil the festive mood of the day.
Katya went home full of thoughts about
tomorrow camping trip, the adventure
she has dreamed about for a long time.
We too are looking forward to this trip, but unlike
Katya, with somewhat mixed feelings.
During the last week, Katya's right hand got noticeably weaker
(she cannot raise it all the way up like a couple of weeks ago
or close her hand into a fist) and her facial asymmetry became more
pronounced. This may be caused by a variety of reasons and
quite probably by tumor activity.
Still, we will do our best to make the trip enjoyable and
memorable for Katya and all of us.
The weather forecast looks promising.
Monday, July 3
When we arrived at the
campground, Katya became very excited.
For a long time she dreamed about living in a tent.
At some point she even
suggested camping on Science Factory lawn.
When the camp was ready,
everyone went to swim in the lake.
Katya enjoyed it tremendously.
She said that with its great size
and the waves (from motorboats and wind)
it was almost like swimming in the sea. Later she added that
this trip is going to be the next best thing after going
Later Katya played ball with the kids
and watched chipmunks running busily around our campsites.
She looked overwhelmed with happiness and freedom.
After dark Katya told us that she added two new colors to
the list of her favorites: dark-dark-dark violet
and bright yellow.
Tuesday, July 4
We celebrated the Fourth of July with a
hike (4 miles round trip)
to the beautiful Agate pool. At first Katya went in a backpack on Sasha's
back, but later changed horses and piggy-backed on Arkasha.
Arkasha and Katya talked about hobbits
and goblins (with teeth as large as human hand)
and also about the wrong (i.e. not good) elves from the Hobbit movie.
Another topic of discussion was the color of Arkasha's hair.
"When I get old," said Katya, "I don't know whether
I will have silver or gray hair, because my hair now
is not as dark as Arkasha's was when he was young."
The brave souls
(Katya among them)
went for a swim
in the ice-cold beautiful pool near
On the way back Katya walked for about 20 minutes and even
ran so fast that Emile and Lizka could barely keep up with her.
When the medicine time came, Julia began "recalling"
her daycare classmate Nina, an angelic-looking
and diabolically-mean and clever girl.
Katya and everyone else including the adults were enchanted
by Julia's stories about
Nina's treacherous tricks.
Koraku and green juice went down without Katya noticing them.
Wednesday, July 5
In the morning, Katya, Masha, Sasha and Anya
went to OHSU for the antibody infusion and
a check-up with Dr. Nicholson, Katya's neuro-oncologist.
Dr. Nicholson has not seen Katya for a month
and greeted her with jokes and tales about his own camping
trips. But when Katya began talking, he saw the stiff side
of her face and his cheerful tone disappeared.
This confirmed our fears about Katya's progressing
symptoms. Dr. Nicholson did not even
want to discuss any treatment options until
after the MRI on July 10.
After the trip to the hospital,
the whole camping party except Sasha Givental (who
took a great fall the previous night and did not like
the idea of showing his bruised face in
a civilized place) met for lunch at Todai. The girls
made a brief window-shopping stop at the Pioneer mall
Then Katya took everyone to Children's Museum.
The kids played there for a couple of hours.
They laughed a lot at their fun-house mirror reflections.
When the museum closed, they continued to play outside (hide-and-seek,
princesses and trolls, etc.) on the lawn among
the big rocks and petrified trees.
The children came back to the camp with some energy left.
They played soccer (Katya played too) and tag with a ball.
When it got dark, Katya invented a new game.
She aimed her flashlight at a spot or a person
and someone (Arkasha and later Laura)
had to catch this "sunny-bunny."
This was a very difficult task. Katya laughed her guts out
when she saw the adults jumping and trying to reach the bunny
without any success.
When the game ended, Katya was the clear winner and
became overfilled with joy.
She is apparently very happy here. She is feeling great.
Katya spent an hour by the fire. She was singing
songs to Sasha's guitar. Then she decided
to go for a walk with Laura.
It was pitch dark, but Katya did not want to
hold Laura's hand. When Laura reminded Katya that if she fell
she could hit her face and make it look like Sasha Givental's,
Katya said "No, I don't want to look like him,"
and grabbed Laura's hand.
Speaking of hands, Katya does exercises for
her "lazy" left hand. For example, in Todai
she tried to separate wooden chopsticks using both hands. It took her
some time, but in the end she succeeded.
Thursday, July 6
Today we went to Breitenbush hot springs.
The water there turned out to be too hot
(180o F) and nobody felt adventurous enough to swim
(even though we've got a permission for Katya from Dr. Nicholson).
So we went on a little hike along Breitenbush gorge.
Katya asked Sasha to tell her stories about
Saints. In particular, she wanted to hear the story of life of
St. Elizabeth of Russia. Sasha reminded Katya
that St. Elizabeth was first a German princess
then a Russian Grand Duchess. She was a philanthropist, a nun,
and finally, after she was killed by Bolsheviks, became a martyr.
Julia's stories about her childhood nemesis Nina
continue to be
a big hit in the camp. Nina's popularity
left the old favorite Barnabe in the dust. After all, Barnabe was some
naughty (and very likely fictional) French boy,
whereas Nina was a real (and a very mean) girl who taunted and harassed
our dear poor Julia. Now everybody is dying to hear a dirty joke
that Nina loved telling her classmates during the
nap-time at their daycare. It seems like the joke was so dirty that
Julia is still embarrassed when she recalls it.
Friday, July 7
It is nice and warm today. Everybody is swimming in
The children take turns
going on a canoe ride.
Katya loves it.
Arkasha was telling hobbit stories again.
Katya talked about the Hobbit movie, "I liked it very much the first time,
but the second time it was not the same movie.
I hated it and can't get my silly
head to forget about it. Whoever changed the film was really nasty."
"Maybe you just remember it differently?" Arkasha asked.
Katya replied, "No I remember both times perfectly well." And she
gave convincing examples of differences.
Then Katya demonstrated her remarkable memory again.
She retold Arkasha "Korolevstvo krivyh zerkal" ("The Kingdom of Crooked
Mirrors"), a Russian children's movie. Katya saw it a couple of months ago
but she remembered all the details.
In the movie all the names in the mirror world were said
backwards (like Anidag - Gadina (viper), Abazh - Zhaba (toad),
Gurd-Drug (friend).) Katya had no trouble saying those names
Saturday, July 8
Everybody is back in Eugene.
Katya, Anya, Lizka and Emile went to Amazon pool.
On her way to the pool Katya made up
a fairy tale, "Shapoklyak in Legoland."
Every time Shapoklyak (an old crone from a Russian animated cartoon series).
was riding a Lego boat she was making mischiefs.
As a result, she fell down from a train and then from a boat.
It was a well done story in the spirit of Shapoklyak's
When they arrived, Katya saw the pool and
said, "Wow! This is my favorite pool, the best pool in
the world!" Then she laughed with joy.
In the changing room Katya saw Lizka's
wet her hair and exclaimed, "Lizka you look so
great with your hair sticking to your head, you are sooo beautiful!"
Katya enjoyed swimming and playing and did not want to leave.
When the pool was closing, she did not care and cried.
On the way back Katya decided to act out a fairy tale and
distributed the parts.
Liza was to be a fairy, Katya a princess (tsarevna),
Emile a wizard (koldun). Julia volunteered
to be a green dragon because she had a green dress, but Katya said that
in this story there was only a red dragon.
In the evening Katya played dress-up with Lizka and Anya.
Lizka was a princess and Anya her "fat duenna" (chaperon).
Katya was a plain girl who was to become a "tsarevna" later.
Katya played her mini-piano with numbered and colored keys.
She played all notes except 4, 6 and 7
because the colors on 4, 6 and 7 (pink, sea-green and purple)
are not on the list of Katya's favorite colors.
In the afternoon, Giventals left for Berkeley.
Katya was sad to see them go.
They are like family for her and all of us now.
Sunday, July 9
When Katya woke up this morning she nearly fell.
She needed to hold an adult's hand in order to walk.
Later in the church, she was able to walk on her own.
Katya was very proud to "regain" this skill -
as if she was not running freely just a day ago.
In the afternoon, however, she was running happily
and jumping on the trampoline with Andryusha Kleshchev
the adults were busy watching the World Cup final.
By the way, even though Katya herself is not very interested in soccer,
she has a very special opinion of it.
When after the church service
the parish played volleyball, Katya asked if this was
some kind of soccer. She was told that this is a very different
game where the ball is hit by hands and not by feet.
Katya said that this game is easier than soccer
because, unlike hands, feet are made for walking and standing and
not for playing games.
When Sasha gave Katya Calc Phos, the only homeopathy Katya
sometimes dislikes, he asked if it was "yucky-yucky" or
Katya was silent for a moment and then solemnly responded,
"Thank you very much, papa, for giving me this medicine to cure me
from my illness." What an unpredictable girl!
Overall, despite the new symptoms, Katya is in good spirits and
we all had a very good day today.
But it is hard not to pay attention to
symptoms that are progressing so
We are bracing for the results of the MRI exam scheduled for tomorrow.
Monday, July 10 - Wednesday, July 12.
Eleven months since diagnosis. Honeymoon is over.
We did not expect Monday's MRI to be good and were bracing
for the worst. But, apparently, nothing can prepare you for
After the nerve-wrenching, emotionally charged events of the
last three days, we are gradually coming to grips with the new
reality. Here are the facts.
On Monday, Katya had her eighth MRI exam. As the previous time,
she agreed to do it without sedation.
The procedure went very well, especially since the contrast
fluid was injected through the port and there were no
In the afternoon Katya's pediatrician, Dr. Bradshaw,
called and said that the preliminary findings
looked bad. Not only did the tumor progressed
but it also metastasized. She wanted to see
Masha and Sasha right away.
With Katya's symptoms developing as they were
during the last two weeks, we were expecting some
tumor growth, maybe even significant, but this was
just too much. Of all the horrible things we learned
about diffuse pontine gliomas, the only "good" feature
was, we were told,
that they almost never spread outside the brainstem.
It looked like Katya was a rare exception.
We felt that the doctors were about to put
her on steroids and palliative treatment.
But we were not ready to give up fighting the tumor.
When on Tuesday we received
the official MRI report,
it did not look so dire.
The secondary tumor is relatively small, localized on the wall
of the frontal horn of the
right lateral ventricle and probably not causing any symptoms now.
Moreover, we found
an interesting recent study of diffused pontine glioma metastases.
It turned out that they are not so rare - 18 out of 96
DPG patients at the Duke Brain Tumor Center between 1986 and 2003
had secondary tumors. Most of them never cause any trouble,
and those that do can be treated or even irradiated
when necessary. So for now our main
concern should be increased activity of the primary tumor.
The overall size of the tumor did not change much, but
the area with enhancement grew significantly.
This means that our treatment plan, even if it was
working before (we will never know for sure),
is no longer adequate. In particular, Nimotuzumab, the antibody
we added to Katya's regimen three months ago,
would have to be stopped.
We did not find open
clinical trials that held some promise for Katya
and, at the same time, would not imperil
the quality of life.
So we will try to keep treating her with a combination
of targeted agents and maybe some other low-toxicity drugs.
In particular, we are seriously thinking about the anti-angiogenic
antibody Avastin (bevacizumab) which has shown
some remarkable results
in recent glioblastoma trials.
On Wednesday we (Masha, Sasha and Arkasha) went to OHSU (our first visit
there without Katya) to talk to Dr. Nicholson.
Exactly eleven months ago he broke to
us the devastating news of Katya's diagnosis.
Incidentally, according to several statistical studies,
eleven months is the median survival time for DIPG patients.
Quite a date!
Dr. Nicholson confirmed the radiologist's finding of a progressive
disease. Then we discussed at length our options.
We decided to continue treating
Katya with a drug regimen and at the same time try to win as
much quality time for her as possible. We also agreed that
this rules out the majority of available clinical trials.
We discussed Avastin (probably with Irinotecan)
as a possible way of modifying Katya's drug regimen.
Even though there is very little known about
using Avastin in children
with brain tumors, Dr. Nicholson approved this idea in
principle and promised to get back to us in the next couple of
days with a detailed proposal. After this visit (it
lasted more than an hour) we went home with the feeling
that Dr. Nicholson cares very much about Katya
and will not hesitate to use
out of the box approaches if they might help her.
Katya is blessed with such experienced and
broad-minded physicians as Dr. Bradshaw and Dr. Nicholson.
What about the most important person in this story, Katya?
On Tuesday, during the evening church service, Katya was
very active and playful. While running away from Anya, she
ran into the wall and hit her head near the shunt.
This was very painful and Katya had a headache.
Despite this and all the emotions surrounding the MRI,
Katya is in a cheerful and positive mood.
While her parents were in Portland, she
had a great time at Lizka's house playing
with Anya, Lizka, Tolya and Julia.
When we came back, she was thrilled to find out
that Dr. Nicholson allowed her to stop taking the
green juice, her least favorite component of the treatment plan.
Thursday, July 13
Today Katya had 1.5 hours of physical therapy
and, unlike the previous session,
was quite cooperative.
In the afternoon Brad and Cleo came to visit.
Katya and Cleo played in the front yard
but soon Cleo got nervous because
Brad went inside and was not coming back for a while.
On our camping trip, Julia tried to teach
Emile and Lizka about poetry.
She helped them write their first poems.
During that time Katya was around but looked completely
A few days after coming home, however,
she was all into it, busily producing her own verses.
She started with paraphrases of familiar
nursery rhymes like
s'el solenyj ogurets."
which is a slightly modified Russian version of
Robin the Bobbin, the big-bellied Ben,
He ate more meat than fourscore men.
Soon, however, she was producing something very
striking. Here are a few samples (with transaltions):
Staruha poshla po tryasine glubokoj
I bol'she ne mozhet idti.
Po nebu togda letit.
Smert' ee pozdravlenie zlym,
No grust' dobrym.
The old woman is wading in a deep bog.
She can't walk anymore.
So she is flying in the sky.
Her death is celebration for the evil people,
And sorrow for the good ones.
Lev inogda rychit na sobak.
No segodnya on grusten
Kak nebo noch'yu.
Sometimes the lion growls at dogs.
But today he is sad
Like the sky at night.
Iisus visyashchij na kreste
I v serdtse bol' kak zvezda.
Jesus hanging on the cross
And pain in the heart like a star.
Maria Egipetskaya na ikone
Lyubeznej ona vseh babochek.
I vseh ona lyubit, dazhe zlyh,
No kogda my vidim vseh svyatyh na nebe,
Znachit my sami na nebe.
Byvaet eshche bol'she.
Esli sredi nih Bog,
To voskliknesh' - Bog!
St. Mary of Egypt on the icon
Is more dear than all the butterflies.
And she loves all the people, even the bad,
but especially the good.
But if we see all the Saints in Heaven
Then we are ourselves in Heaven.
Sometimes there is more.
If God is amongst them
Then you exclaim - God!
Friday, July 14
Katya invented a new way of reading books to her.
She would listen to two or three lines from a page
then flip a page or two.
Natasha tried to reason her,
"Katya, you won't understand
the story this way!"
"Perhaps," she replied, "but this way they are more interesting -
I can imagine more!"
But when the story gets really
Katya asks to read (or retell) it to her in full.
By the way, it is now an established fact that
Katya knows how to read (in Russian).
Since nobody was willing to accept
the responsibility (or honor) of teaching her anything besides
the pronunciation of letters, we concluded that she
Today Katya learned a great secret.
A real Princess from Thailand
Her Royal Highness Bajrakitiyabha Mahidol
[POT Cha RA-GIT TEE-YA PA, MA-hee-DOAN],
the eldest granddaughter of King Bhumibol Adulyadej,
will visit our town on a cultural mission.
She is going to open a Thai exhibit, present gifts
to libraries and meet with local celebrities
Incidentally, Princess' royal grandfather, the Thai King,
was born in the same hospital as Katya,
Auburn Hospital in Cambridge. But, of course, this
is not the only reason why the Princess wanted to see Katya.
Katya is VERY excited and happy and also VERY nervous.
She has to decide how to address the Princess
(her Royal Highness or simply her highness),
and what to give her for a present (she decided to give
one of her own artistic creations,
but which one - that is the question).
Most importantly, Katya needs to know how to make sure
that the princess is genuine and not a fairy-tale
one (like those Katya met at Disneyland).
After thinking about the problem,
Katya said that she will know whether the Princess
is real when she sees her. She does not expect the Princess
to wear a crown or a "princessy" dress.
Only make-believe princesses need special attire to
Saturday, July 15
Katya meets the Thai Princess
Katya and her entourage were told to arrive
at the Springfield Library at 11:00
for a special meeting with
Katya got up very early this morning -
she had to take her medicine, eat breakfast
and - that was especially difficult - decide
what dress to wear.
Also, before leaving, Katya talked to a TV reporter
who was making a film about Katya's dream coming true.
Exciting things started even before Katya
entered the library. At the entrance
she was given a VIP welcome by
a real policeman (with a medal!)
and a real police dog (also with a medal).
Once inside, when everyone was waiting for the Princess,
Katya found her way to the children's section and
started to read (with Anya's help) a book about
Despite her calm, it was clear that Katya was nervous.
Every moment someone would come to explain
how to behave and what to do.
The protocol was very strict and tight,
but still Katya was hoping that the princess
will give her something to eat. She told Masha
yesterday that this would make her very happy.
the princess appeared and greeted children,
Katya's dream came true.
The Princess came to Katya and
gave her an apricot.
Katya gladly accepted it and immediately started to eat.
They also exchanged presents.
Katya gave the Princess flowers and her painting.
(She decided which of her
artistic masterpieces to give to the royalty
at the very last moment, only after seeing
that the Princess was dressed in a bright red costume.)
In return, the Princess gave Katya
a royal flag
a book about the King's pet dog written by the King himself.
Right after the meeing,
Katya talked to the press.
Katya told the reporters that
she was very happy to meet Princess Bajrakitiyabha.
Not only was she a real princess, but she also had a very good taste,
since she was dressed in one of Katya's favorite colors.
The apricot, Katya said, was OK, just a little bit sour.
But she ate it all anyway, especially because the Princess
told her that it will make her skin beautiful.
Reporters, apparently, liked Katya and her answers.
They made a film and showed it twice on the local
TV station KMTR NewsSource 16.
You can read the transcript and watch the video
After the official business, Katya and Co went to a
Thai restaraunt. When waitresses and staff saw the royal
flag and the King's book and learned that Katya had just
talked to the Princess, they were ready to treat Katya
What a day!
Sunday, July 16
At church Katya was in a very good mood.
She ate well and played with children
The parishioners talked about Katya's meeting with the
Princess on the evening news.
Katya was proud and willingly answered questions.
Later Katya, Masha and Sasha visited Father David's family.
Katya had a great time there. She
and laughed a lot watching Joseph's (Father David's son)
Monday, July 17
Katya stayed mostly at home today - it was
rather warm outside.
At first she pulled out all Barnabe books
that Julia made for her and "read them
aloud" (from memory) to Natasha.
Katya's memory is amazing.
We thought she long lost interest in this naughty boy's adventures.
But it turns out that she still remembers them
vividly to the tiniest detail.
Then Katya decided to switch to good guys
and asked Natasha to read her some
Muromets stories about a popular hero of Russian folk tales
After reading, there came time for math.
Katya loves numbers and she likes making
up her own problems and solving them.
In one of the exercises, Katya compared
her age with Lizka's at various points in the future:
"When Liza is 8, I will be 6, when Liza is 9, I will be 7,
..., when Liza is 20, I will be 18."
Dealing with numbers probably reminded Katya about Mitka
who is now working on a math project at a summer research institute
at MIT. All girls miss Mitka a lot and are counting days till he
returns. Katya assembled a pile of presents for Mitka
reaching up to her waist. She included several huge teddy-bears,
one of her favorite pillows ("fluffy on one side and funny of the other," as
Katya described it) and many other things.
"The last big teddy-bear is for Anya," she said
and started laughing.
"This bear is already Anya's," she added. "Ha-ha-ha!"
Despite nausea and vomiting in the morning,
Katya was cheerful and in a good mood the whole day.
Tuesday, July 18
Katya vomited in the morning before breakfast again.
Since this was the third time in four days,
we decided to check whether the shunt is working
We took Katya to Sacred Heart Hospital
for a CT scan. The scan did not show any signs
of hydrocephalus. This means that
the new symptoms are probably caused by the tumor.
Even though this is yet
another sign of increased tumor's activity,
we are relieved to learn that the there is nothing
wrong with the CSF flow in Katya's brain.
In particular, this means that
we will be able to start
Avastin/CPT11 treatment for Katya tomorrow.
After the hospital visit,
Katya, Masha, Sasha, Anya and Lizka
went to the Rose Garden.
They played hide-and-seek,
smelled roses, and simply
had a great time.
From there the company went to Borders bookstore
where they read tons of books
and bought a present for Katya, an "Alice in Wonderland" pop-up book.
Wednesday, July 19
Beginning of Avastin Treatment
This morning Katya went to Portland to see Dr. Nicholson
and to start her new treatment.
Katya vomited again but Dr. Nicholson said that,
since there was no hydrocephalus on the CT scan yesterday,
we can start Avastin treatment today.
We were glad to hear that.
is a very promising anti-angiogenic drug which has shown
in glioblastoma trials. The usual concern is that,
since it has not been tried on
children with brain tumors, it may cause some
serious side-effects. But a
recent pediatric trial found that Avastin is well tolerated
in children with non-CNS solid tumors. Also
we learned about a few children with brain tumors
who used Avastin with Irinotecan (CPT-11)
off label and did have not any problems other than diarrhea.
These results looked impressive not only to patients
and doctors. When our insurance company (Blue Cross and Blue Shield)
saw the trials' data, they agreed to partially cover the treatment.
We were glad to hear this - Avastin is a VERY expensive drug.
So Katya started her new treatment today.
First she was pretreated with two 30-minutes IV infusions
of Zofran and 2mg of Decadron
to prevent infusion-related complications.
Then, after flushing, she had two
90-minutes infusions with Avastin and
CPT-11. All together, Katya spent five hours
doing the IV treatment. Amazingly, she was neither
bored nor tired - she watched movies, listened to music
and played with toys, all without complaining of
showing any signs of discomfort.
After the procedure Katya became quite hyper-active (but not aggressive as
we were afraid she might be on Decadron) and spent some
time letting out her energy.
First she ran along the hospital's halls playing hide-and-seek
When she got tired of running, she found herself a
car and started driving around in it.
Later she switched to a tractor.
Before Katya left the hospital, the nurses gave her
a fancy Lego set for a present.
Back in Eugene, Katya
decided that she needs to play more and
said that she wants to go to Tugman park to
take medications and to play.
And so Katya went to Tugman
on a bike
with Anya, Sasha and Arkasha.
Each of her companions had a special task.
Anya was the
driver of Katya's bike.
Sasha was the carrier of Katya's medications and
And Arkasha was a
very convenient target for
Thursday, July 20
For the first time in days Katya did not have nausea in the morning.
Instead she said that she was hungry and ate a decent breakfast.
In the early afternoon, however, she felt nauseous
and for some time was worried that she will throw up.
In the end nothing happened.
It is getting very hot and impossible to play outside.
So Masha took Katya and Anya
to Amazon pool where they spent several delightful hours
in and around water.
Friday, July 21
In the morning Katya went to her osteopath.
Always she enjoyed the visit.
After lunch she complained about nausea again
and eventually threw up.
Anya together with Katya wrote a poem on the occasion.
Here it is (in Russian with literal English translation):
Even though vomiting is worrisome,
we are glad it does not happen in the morning.
It is more likely related to the treatment than
to the tumor, so we may try to control the symptoms by
anti-nausea medications and homeopathy.
|| Ikota, ikota,
|| Hiccup, hiccup,
Ty luchshe chem rvota.
You are better than vomiting.
Tak chto ne bojsya,
So don't be scared,
A luchshe umojsya.
but better go and wash yourself.
In the afternoon Katya was left in the care of
Julia and Anya.
When the Koraku time came, Anya invented a special
game. Anya played a Lord and Katya played the role of
a Princess who was turned into a toad and
could turn back into a princess only after drinking a magic potion named
Koraku. Anya said
"And so the Lord found Koraku, came to the Toad and told her to open her
mouth." Katya immediately opened her mouth and
down her throat went Koraku.
Julia's job was to provide custom-made fairy tales
to go with Katya's meals.
Katya suggested odd combinations of characters and
Julia engaged them in action.
At some point Katya said "Now I am going to make poems.
You, Julia and Anya, pull out your pencils and
start writing them down."
When she finished dictation, she asked Julia and Anya to read
what they wrote and corrected their errors.
Katya sure takes her work seriously.
This time she experimented
with rhymes and rhythm and did not care much
Then she asked Julia and Anya to make
stories in rhymed verse on topics of her choice.
One story was about "A bubbly girly who hurt her little knee"
["devochka-penochka kotoraya razbila kolenochku"]
(which was actually a line from Katya's own poem).
In the afternoon
Wanda Kashirin came and brought Katya a large
sunflower (still Katya's favorite flower).
Together they played with baby animals and the doll-house.
Katya has a dress with pants sewn to it.
She likes to ask visitors to help her
take the pants off and laughs happily when
they fail. Wanda was one of the victims of this
Later everyone went to Kleshchev's for the weekly
reading. Katya played with Masha Kleshchev
and her friend Maria, jumped on the trampoline
and danced vigorously to a tune from "Madagaskar."
She proudly demonstrated the strength of her right
hand by lifting a small dumbbell (she could only lift it
up to her waist, but still, it was an achievement).
Her appetite was good too. She ate five of Ella's
"tvorozhniki" (cottage-cheese pancakes).
Katya e.a. were having such a good time that nobody wanted
to leave till very late.
Saturday, July 22
In the morning Sasha and Wanda Kashirin
came with their dog Fifi.
Fifi is a papillon (a dog so tiny that
even Lizka is not scared of it)
who is exceptionally well trained.
She can even play on a toy piano.
Katya was very glad to see them and tried to
entertain her guests by whatever means she had.
She danced, used her right hand and
walked along the rim of a hula-hoop.
When visitors left, Katya played with Lizka.
Katya was a teacher and Lizka was her student.
Katya gave Lizka an
assignment to read her some Biblical stories.
Lizka read and Katya listened attentively.
She carefully corrected Lizka's pronunciation
errors. Then Katya started teaching Lizka
how to read some very long and difficult Russian words.
(She is not at all interested in reading short and simple
words that anyone can read.)
Lizka asked Katya whether she misses Mitka.
Katya thought for a moment and replied
"Yes, I miss Mitka, but even more than him
I miss Linda [Lizka's next door neighbor]."
"Why?" asked Lizka in surprise.
"Because I have not seen her for a multitude
[mnozhestvo] of days," said Katya.
"Should I bring her to you next time?"
"I am not sure," said Katya, "I do want to see
her, but since I haven't seen her for a long
time, I am afraid I will be too shy to enjoy her visit."
Late in the evening, Carlo and Helena,
Masha and Sasha's friends from Italy, arrived.
They will stay in Eugene for several days.
Sunday, July 23
In church Katya vomited just before Eucharist.
All the pills and food she took came out.
After that she was alright and in a good mood.
However, in the afternoon, soon
after she took a new portion of medications,
Katya threw everything up again.
These events did not upset Katya at all.
She just said that she would have to eat again.
The diarrhea arrived as well.
It is a standard side effect of Katya's
new treatment and hopefully it will pass after a while.
In the afternoon the heat became unbearable.
Katya's family and their Italian friends
decided to escape to the
and spend three days camping
in the beautiful Honeyman State Park
near Florence, Oregon.
Compared to the sizzling heat (103oF) in Eugene,
temperature on the coast was chilling 64oF.
However, the sun was bright and the sand was warm.
While some of us swam in Clearwox lake
(the water felt warmer than the air), a very happy
Katya went on a little hike in the dunes
with Natasha. Katya pretended that she was a dune-princess inspecting
her new exciting realm.
She sang hymns to the abundance of sand and to the clouds hurrying above
Monday, July 24
After breakfast the campers went on a
hike along the Hobbit trail.
It was exactly what you would expect a good hobbit trail to be,
a well hidden, tunnel-like path going through deep woods, with
fantastic, moss-covered trees.
It felt a little spooky and it was clearly leading
to a magical place.
Katya immediately fell in love with the trail
and claimed that it was made especially for her as her house.
The trail indead led them to a magical place.
When they reached it, Hobbit Beach was covered
with mist and was a great place to explore and play.
Tuesday, July 25
In the morning the company went hiking in the dunes.
There was a very strong wind and Katya got sand in her eyes.
This hurt a lot and Katya said that she wanted to go home.
They folded their camp and decided to swim in the lake before
going back to Eugene.
Meanwhile, a great surprise was being prepared for Katya.
Yesterday, Katya's grandmother Lyusya came from Moscow.
In the afternoon Arkasha took her and Natasha, Masha's mother,
to Honeyman park for a rendezvous with Katya and the rest
of the camping party.
Katya did not know anything about Lyusya's planned visit
and was caught completely off guard when she saw her.
At first she was speechless. Then her stunned look was replaced by one of pure joy.
After this brief display of emotions, Katya composed herself and calmly turned
to Carlo and Helena.
"These are my two grandmas," she said.
"This is Lyusya, Papa's mom. She lives in Moscow.
And this is Natasha, Mama's mom.
She also lives in Moscow, but now she lives in Eugene."
After a good swim in the warm lake
the company returned to Eugene.
After a dinner at Julia's house the girls
put up a short concert.
Then Anya, Lizka and the Italian guests started playing
King (a card game) and Katya, not that much interested in obeying
rules, continued with the entertainment program.
She recited "Song of Oleg" for the grandmas and then
"read" to them several fairy tales with her own additions and comments.
After that Katya pulled out colored pencils and asked grandmas to give her
words to write and draw pictures about. She was interested only in long and
difficult words, since she finds short words dull and uninspiring.
The greatest hit was "Brazil" (Braziliya in Russian, i.e. much longer)
which Katya illustrated with pictures
of ships, jaguars and armadillos, exactly as they are mentioned in the
very popular Russian children's song "I've never sailed the Amazon"
(after Kipling's poem).
Despite a rough start, this was a very good day full of excitement and fun.
Medically speaking Katya was doing quite well for the last two days.
She did not vomit or feel nausea which is probably due to Zofran.
Wednesday, July 26
We did not give Katya Zofran in the morning to check whether
it was the drug and not just homeopathy that was stopping nausea.
Well, Katya duly vomited to give us proof that the new homeopathy does
not work by itself. We will have to change homeopathy (and
stick to Zofran for now).
Katya had a blood work done today. All counts turned out OK.
Katya wanted to refresh her "Thai heritage", so the whole
company went for lunch to Katya's favorite Thai restaurant.
From there they went to Borders' to get food for thought
(and to take Koraku). Katya got interested in
a musical book with a built-in piano.
She played various melodies for Carlo and Helena
and at the same time tuned herself up for Koraku.
The heat was down significantly so the company decided to
spend afternoon outside.
They went to the UO campus with
Carlo and Helena
and had some fun there.
In the evening Katya watched "Mulan" with her dear friends.
Then she took Koraku from Helena and Anya
with additional help
provided by Tom and Jerry.
Thursday, July 27
Today the company went on a hike to Mt. Pisgah. At the last
moment Katya decided that even though she was well
equipped, she did not want all this sun on the way up.
Instead, she and Sasha walked and played
in the shadowy
Mount Pisgah Arboretum.
After the hike everyone enjoyed a
swim in the Willamette River.
Katya was a "very dangerous Katya-fish" and
Carlo and Helena were very scared as she chased and tried to swallow them.
After the swim Katya again became a "tame little
When Carlo and Helena just arrived, Katya felt more at home with
Helena. But by today she completely overcame her shyness with Carlo.
She felt quite comfortable with him.
Friday, July 28.
In the morning everyone went to the
Rose Garden to enjoy flowers.
Katya herself looked like a beautiful flower and
so it was almost impossible to find her among the bushes when
they played her favorite hide-and-seek in the roses
game. But Helena was very smart. She went on smelling all the flowers in the
garden. When she got near Katya, she figured out that such wonderful
fragrance may only be coming from the very best flower.
And this is how Katya was found.
In the evening came the sad moment of saying goodbye to Carlo and Helena.
Katya put on her princessy outfit
and presented them with her parting gifts.
To Carlo she gave a crystal cube with a boy, a girl and
a heart in it and a "I love you" sign. We were all amazed since this was one
of Katya's most treasured things. Well, love is love.
For Helena she has chosen a very special sunflower decoration.
Sunflower is still Katya's favorite flower and she was delighted to see that
Helena put it on her hair like a crown exactly as Katya herself used to do.
When Carlo and Helena were getting into their car, Katya finally cast away
her shyness about using Italian and shouted "Ciao!!!"
Sunday, July 30
At church today Katya sat through the whole service
listening attentively. During Father David's sermon,
she asked Julia to translate what he was saying.
When Katya found out that he was talking about
an Evangelical story she has known for a long time,
she asked Julia to stop translating because there was nothing new for her there.
Still, this disappointment did not prevent Katya from enjoying a
ride on Father David's shoulders.
After trapeza Katya and Masha watched a volleyball game.
While rooting for the team on which Michael
(18 year-old son of F. David) played, they had a very interesting conversation:
K.: Mama, why boys don't like me?
M.: What do you mean - boys do like you. Andryusha, Vanya, ...
K.: [Interrupting] No, I don't mean small boys - I mean big boys.
M.: Big boys too. Take Mitka ...
K.: No, Mitka is a cousin, he does not count.
But take Michael, for example, he does not even notice me, never looks in
M.: Well, this is probably because he is too shy to talk to you since
you were not properly introduced.
(This is the reason Katya usually gives when asked why she does not
talk to a certain person.)
But this can be helped.
After the game, Masha came to Michael with Katya and "introduced" them very
"properly." Immediately Michael started recognizing Katya and
soon they became friends. He even gave Katya and Masha
very special hats.
After church Katya and Co were in the artistic mood.
So they went to the Potter's Quarter at Oakway Plaza
where they painted clay figures and cups.
Later the store will fire the pottery and make them into real pieces of art.
Back at home Katya had another interesting conversation.
This time it was with Natasha.
K.: Let us play that I am a fish and you a fisherman.
N.: Then I will catch you. Here, you are in my net.
K.: Oh, Fisherman, please let me go! I will fulfill any wish of yours.
N.: But what should I wish for?
K.: Let me think. Are you married?
K.: So. I wish that I give you a good husband. [Pause]
What kind of husband would you like?
N.: I don't know.
K.: Do you want an emperor or a baron?
N.: A baron would do.
K.: But emperors are better.
K: Oh, don't you understand ?? ...
Monday, July 31
Today Katya and Masha decided to clean up and rearrange
Suddenly, Katya started setting aside lots of toys and books, including some
of her recent favorites, to be given away.
When Masha expressed her surprise, Katya gave the following explanation.
"Lizka has very few toys so she might be unhappy and
offended when she comes here and sees that I have so many."
But there is nothing to worry about yet. Katya still
has plenty of toys to play with.
Later Katya, Anya and Lyusya went for a walk.
They stopped to play at a playground where the girls had an
Then they continued to Lizka's house and, after playing there for a short
while, returned home with Lizka. They also brought
a new batch of the Pink Panther cartoons to help with Koraku.
Tuesday, August 1
In the morning the girls again met at the playground.
They enjoyed going up and
In the afternoon Katya went to
Lena, Ilya and Phillip Binder to meet the new member of their family, baby
Andryusha (not to be confused with Andryusha Kleshchev).
Katya was enthralled with the baby and spent a lot of
time watching and caressing him.
During a very tasty meal
Masha asked her:
"You seemed to really like the baby. Would you like such a baby for yourself?"
"No," said Katya, "I don't want such a baby. I want our baby!"
[Takogo ne hochu, hochu nashego!]
Wednesday, August 2
Today was the day of the next Avastin/Irinotecan infusion at Doernbecker
(OHSU) Children's hospital.
The infusion went well, but immediately after it Katya started having
a very rapid breathing (40-45 times per minute).
She was given a high dose of Decadron (8 mg) in case there was some internal
swelling, but nothing changed. So Dr. Nicholson recommended staying at
the Doernbecker overnight.
Unlike our previous experience with Decadron, this time it did not make
Katya aggressive. She did have some mood swings, but they were
relatively easy to control by taking Katya to the playroom, reading books to
her or letting her paint with her hands. At one point, this poor girl,
panting hard and stuffed with steroids, said to Anya:
"I know that this is not good, but I want to bite you.
I cannot help it. Do you mind if I bite you just a little bit? Please!"
What a sweet child!
Thursday, August 3
In the morning Katya woke up in a bad mood.
She cried that she did not want to be in the hospital and demanded that they go
home right away. Then agreed to watch the "101 Dalmatians"
movie (non-animated) first.
Katya enjoyed the movie. However she complained that the bad guys
did not look as bad and frightening as in the Disney animated version.
Just as the movie ended, a volunteer helper walked into Katya's room
with a cat and a dog. The timing could not be better and Katya's day
in the hospital was saved!
During the night Katya's breathing rate came down a bit,
but in the morning it jumped back to 44 per minute.
Still, since there were no additional developments, Katya's condition
was classified as stable and she was discharged.
On learning that she is free to go home, Katya
decided to stay at the hospital a bit longer and explore its playground.
She also found a tricycle and had a
great fun riding it along the hospital halls.
Despite her rapid breathing and lack of mobility in the right hand and foot,
Katya rode the trike
with confidence. She skilfully maneuvered to avoid colliding with patients and
While they were still at OHSU, Sonya Pekelny, who happened to be in Portland,
stopped by to check on Katya.
Sonya was very impressed with the way Katya looked and behaved.
Soon after returning home, Katya had more visitors.
Brad Shelton came with Cleo
and Katya was not afraid of Cleo at all.
Katya gave Brad a souvenir, a special Chinese
device for pinching noses.
Brad tried to pinch various noses, Katya's, Cleo's, etc,
but the only nose that was relatively easy (and safe) to pinch
turned out to be his own.
Friday, August 4
In the morning Katya's breathing rate was in the 30s and
by afternoon it got down to normal. We hope that
there will be no more surprises at the next infusion.
To avoid potential problems, Avastin infusion will be
done at a slower rate.
When Katya came to her weekly osteopathic treatment,
the doctor said that her energy was blocked at the heart level.
He said that this might be related to her rapid breathing.
When he touched sleeping Katya to unblock the heart, Katya jolted
as if from an electric shock.
Katya likes playing Gobblet with Natasha and Lyusya.
game is similar to tic-tac-toe except that you can gobble your
opponent's pieces. With so much practice, Katya got simply unbeatable.
After another loss, awestruck Lyusya told her: "Katya, you are playing simply
K.: What does it mean, colossal?
L.: Well, it is something like great or majestic.
K.: And can you say "empresstic" [imperatritskij] instead? [by
analogy: (Your) majesty - empress]
And thus a few new words were added to our family vocabulary
courtesy of our little majesty.
In the afternoon during the weekly
Katya jumped on the trampoline with little Stacy Masakov.
She was glad to be the oldest child on the trampoline.
She did not even mind when
Sasha showed up to give Koraku.
Moreover, she gave Sasha a job. He was to prevent
bigger children from climbing on the trampoline.
Little Stacy and Katya became good friends and
played very well together.
Saturday, August 5
Natasha is going to San Francisco for a week. She came to
say goodbye to Katya.
N.: What kind of present would you like from San Francisco?
K.: Bring me something red. [pause] But, please,
only not another Chinese dress. They are all too tight. [pause]
You know what? Bring me a Chinese ball which is square and red ...
In order to make Katya and Anya pirate games more diverse,
Katya created a list of acceptable names for her.
Here are some popular ones: a madcap (sorvi-golova or Casse-Cou),
a silly head, darling (golubchik) and a one-eyed girl
Katya's fairy tales are getting more and more sophisticated.
Here's the one she told us today:
Once upon a time, there was a magic tree with berries of two
different kinds. Yes, on the same branch there were strawberries and
cherries. And they were full of magic.
Well, Anya came and started eating the berries from one of the branches of
the tree. No matter how hard she tried,
there was never an end to the berries.
Finally Anya could not eat any more berries
and died (because of the magic in the berries).
Then the same sad thing happened to Arkasha, and then to Masha, Lyusya,
Natasha, Julia, Sasha and Lizka. Finally, the smart girl, Katya, came to the
magic tree and started eating berries from the same branch. She ate and ate
and ate and ate and, when she could not eat anymore, she went on eating anyway.
And - lo and behold - there came a moment when no more berries were
left on the branch - Katya ate them all! And she lived and was full of magic!
Sunday, August 6
At the churchyard today, when everyone was eating grilled
sausages with chips and other junk food, Katya complained
that because of her illness she could not eat what
normal people eat.
Sasha took pity on her and brought her a plate of "common" food.
Katya looked at it, sighed and turned away without touching it.
It's either she has been thoroughly contaminated with the "healthy food"
or she just wants to be tempted and resist temptation.
After church Katya came to play with Lizka and Anya. They decorated Lizka's
back yard with traffic signs and rode their bike, trikes and tractors
strictly following the rules. Then Katya did some soap bubbles magic and enchanted Julia and Arkasha.
As a result they failed to notice when Katya and Anya kidnapped Lizka and
took her to their house.
In the evening, when Julia and Arkasha came to Katya's house to rescue Lizka,
it turned out to be a rather difficult task.
Both Katya and Lizka
became respectable ladies, well off, but not exceedingly
wealthy. Katya was a widow of a rich merchant who was killed in a war.
She was raising two adorable children and needed Lizka's help badly.
So she simply could not let Lizka go home. In the end we had to bribe
Katya. We told her stories and listened while she was reading from old
Julia's books about Barnabe and Katya.
In spite of her great passion for books,
it gets increasingly harder to find what to read to Katya.
She knows all her old books by heart and
is not so fond of new books. (She still likes to listen
to books on tapes in the car.)
So these Julia's books with large letters and familiar stories and a few
other books that Katya likes to read for herself
are the only ones we can always count on in case of need.
Luckily, Katya has been
such a sweet girl
lately. Even Koraku can be given quickly and without problems if you happen
to strike the right note (or have good negotiating skills).
Monday, August 7
Katya started her morning with her usual domestic activities.
She read with Lyusya, painted with Masha,
made scientific experiments using magic markers with
Anya and played with Barbies and the railroad by herself.
After lunch she watched Chaplin's
"Circus" for a while. Then (probably inspired by Merna in the movie)
she "ran away from home" with Anya. They ended up on a nearby
playground where they sneaked onto a ship. Katya was a captain
and Anya was responsible for their food.
She picked plums and blackberries growing along the shores.
In the evening Lizka came for sleepover. She helped Katya
watch "Donkey Skin" and take Koraku.
Tuesday, August 8
When Katya wakes up in the morning or in the middle of the
night, she usually ends up in her parents' bed.
This time it was different.
Katya found Lizka sleeping on the floor and
decided to spend the rest of the night with her.
(Because, as she put it, Lizka felt very cold.)
All morning the girls played
their current favorite game, "The grownups."
This time Anya was the owner of a fancy shop,
Katya was a very rich lady who bought
lots of important and necessary things, such as
a live cheetah, two statues and several paintings from Anya,
and Lizka was just a poor girl who could buy nothing
and whose only hope in life was to find a rich husband.
After a very intense match of the Blokus Game,
Katya and Lizka watched cartoons about
a bear and a
hedgehog that Lyusya brought from Moscow.
They loved these cute cartoons after S.Kozlov's stories, especially the one
Then Katya "read" Lizka and Anya several poems from the book
"My Fantazealand" [Moya Voobraziliya]
by Boris Zakhoder.
Katya took the name of the book literally.
After reading the title of each poem, she imagined the rest
without consulting the text.
In the afternoon the girls went to Tugman park.
Katya felt adventurous and for some time
was going up and down the slide all by herself.
Then she joined Lizka who was building sand castles
and started making "sand angels."
This caused a little aesthetic conflict and Julia was called
with a peace-making mission. She brought her new poem and
Katya started reading it right away.
Wednesday, August 9
After breakfast Katya spent some time
working with play-dough
and then went for
at the playground near Lizka's school.
In the afternoon Julia brought her new poem
about Katya and Katya decided to give a full demonstration
of her reading methodology.
First she slowly read the first line of the
poem. Then she repeated the first line again, but this time much faster.
Then she read the second line (slowly again).
After that she repeated the first and the second
lines faster. Then comes the third line (slowly). Then the first three
together (faster). And so on. Katya is very thorough and persistent
and by the end of such exercise she usually knows the text by heart.
Katya continues to enjoy long words and funny word-combinations.
She is quite a linguist.
And here are some of Katya's new poems:
|| Girly, girly,
||Chto ty za penochka,
|| You are a pearly,
||Ved' ty ne mozhesh' stoyat'.
|| You cannot really stand.
||No odin raz mamulya
|| But once mommy went out
|| To wander about.
||Ty odna zhe i doma ostan'sya opyat'.
|| And you're home alone again.
||No znaesh' opyat'? ---
|| But you know again?
||Ne znayu opyat'.
|| I don't know again.
||Chto sbudetsya opyat'
|| What will come true again
||Ne mozhesh' opyat'
|| You cannot again
|| Cannot see again
|| Because again
||Zhit' opyat' i opyat' i opyat'.
|| To live again and again and again.
|| Sunflowers, sunflowers,
||Chto vy za moroziki!
|| What little frosts are you!
||No nasha mamochka podsolnukh
|| But our mommy is such a sunflower
||Da ne glaza otvedesh' ot nego.
|| That one cannot take eyes away from her.
||Dal'she odin raz opyat' i opyat'
|| Then one time again and again
||Povtoryaj etot stikh opyat' i opyat'
|| Repeat this poem again and again
||Skazka opyat' ne muchaj opyat'
|| A story again don't torment again
||No opyat' i opyat'
|| But again and again
||Chto zhe skazka
|| What about the story
|| If it is a winkory?
||No vse opyat'
|| But everything again
||Zhit' nam opyat'.
|| We are to live again.
||Glazki ne morgaski
|| The eyes are not winkeyes
||Nosik ne morgosik
|| The nose is not a winkose
|| Our noblinky...
|| Our nowinky
||Ne nado segodnya
|| Please don't today
|| Wink with paint
||Ne nado uzh i zavtra
|| And tomorrow please don't
|| Wink with paint
|| And yesterday
||Zachem ty ne mog
|| Why could not you
||Ostanovit'sya kushat' morozhenoe
|| Stop eating ice-cream
|| Our people are too busy
||Vse i opyat'
|| All and again
||(Povtoryaj 4 raza)
|| (Repeat 4 times)
||Ne nado segodnya
|| Please don't today
||Rvat' zhe tsvetochki
|| Pluck dear flowers
||Ne nado uzh i zavtra
|| And tomorrow please don't
||Rvat' zhe tsvetochki
|| Pluck flowers
|| And yesterday,
||Zachem zhe ty kushal limon,
|| Why did you eat lemon,
|| Our people are too busy
||Vse i opyat'
|| All and again
||(Povtoryaj 4 raza)
|| (Repeat 4 times)
||Mama odnazhdy kushla
|| Once Mama kwent
||S kuritsej vmeste kushla
|| With a chicken together she kwent
|| Once today
||Opyat' i opyat'
|| Again and again
||Povtoryaj etot stikh
|| Repeat this poem
||Ne muchaj menya
|| Don't torture me
||Voobsche-to ne nado
|| But on the other hand don't
||Povtoryat' etot stikh
|| Repeat this poem
||On sam povtoryaetsya
|| It repeats itself
||Opyat' i oyat'
|| Again and again
||Do kontsa mira
|| Until the world ends
|| It repeats itself
||Opyat' i opyat'
|| Again and again
||Kuritsa bednaya nasha opyat'
|| Our poor chicke again
||Zalezla pod stol vse opyat' i opyat'
|| Climbed under the table and again and again
||No kosichki ee vse spuskayutsya vverkh
|| But her braids keep descending upwards
||Nosik ee ne mozozik ee
|| And her little nose is not her coldose
||I nasha opyat' skazhu vam opyat'
|| And our again I will tell you again
|| There lived an old man
||Nekogda zhit' emu bylo
|| Who did not have time to live
||Glazki ne morgaski
|| The eyes are not winkies
||Nosik ne morosik
|| The nose is not a coldose
|| The rose bloomed
||Starik ne umer
|| The old man did not die
||No dal'she opyat'
|| But then again
||Skazhu vam poka
|| I'll tell you so long
||Do svidan'ya druz'ya
|| Good bye my friends
|| Good luck---so long!
||Mama poshla pogulyat'
|| Mama went for a walk
||Ushla na veki vekov
|| She left for eternity (forevermore)
||Mama vernulas' domoj
|| Mama came back home
|| Rejoyce both
||Ya i moya Sanechka
|| Me and my little Sanya
||No uzh papa uekhal na veki vekov
|| And yet Papa went away forevermore
|| And back came he
|| Rejoyce all three
||Ya, Mama, Sanya
|| Mama, Sanya and I
||I noch'yu opyat'
|| And at night again
||Nikto ne uekhal
|| Nobody has gone away
||No odnazhdy odin raz
|| But once upon a time one time
|| Today again
||Skazhu vam poka!
|| I will tell you so long!
||Kto znaet volshebnuyu silu tsvetka
|| Who knows the magic power of a flower
||Tot znaet volshebnuyu silu menya
|| Will know the magic power of me
In the evening Sonya came to visit. The
whole company watched Disney's "Beauty and the Beast"
and saw Katya taking Koraku.
Thursday, August 10
In the morning Katya had her regular blood test.
It went very well and the results turned out
to be quite good too.
Only iron (but not hemoglobin) is slightly lower so
we will increase Katya's daily portion of pomegranate
Back at home Katya played dress-up. She was very good
as an old lady and
simply stunning as a medieval bride.
Today was Lyusya's birthday.
Katya gave her a very special yellow rose
and sang her "Happy birthday" in three languages.
Katya wanted Lyusya to have her birthday party
at a Thai restaurant. Since we've eaten quite a lot
of Thai food lately, we tried to dissuade her
arguing that there are many other exotic
cultures and restaurants. But Katya was steadfast.
The only amendment she accepted was
to go to a different Thai restaurant
(Ring of Fire).
On the way to restaurant Katya made a stop in the
After dinner Katya kidnapped Arkasha so that he could watch
"Beauty and the Beast" with her and see how she takes
Koraku in less than one minute.
It was truly amazing and probably Katya's record.
Friday 8/11 -- Thursday 8/31/2006
Tomorrow (September 1) we are leaving for California
for the few remaining days before school starts.
We will visit friends in the Bay area and the Russian
Orthodox Cathedral in San Francisco.
We will return just before Katya's next MRI on September 6.
Hopefully this trip will help to alleviate
the pre-MRI syndrome.
We will post a detailed account of the events of the past three weeks when we
return. For the moment, here is a brief summary.
Katya has been doing quite well on her new treatment.
She experienced rapid breathing again during the August 16 infusion,
but it was not as scary as the first time and it did not last
that long. After yesterday's (August 30) infusion the change in breathing
rate was very small.
Katya's symptoms seem stable. Some of them (like right hand movements)
are slightly improving and other (like the right foot weakness) are not.
However, her physical and psychological state is much better than
before the beginning of the Avastin/CPT-11 treatment.
Physically she became stronger and more active and enthusiastically
participates in various vigorous activities (like walking, biking and
running) which she was not able to do not so long ago.
Also she has been in a very good, joyful and cheerful mood almost
throughout the whole period.
In short, Katya and the rest of the company
are having great time.
On August 12 we marked one year from Katya's diagnosis.
What an enormous year it was and how much it changed us all!
But one thing remains exactly the same as it was a year ago,
our determination to do everything we can to save Katya.
End of September - October 21, 2006
As many of you know, Katya's symptoms have been progressing since mid-September.
She started having trouble with balance and speech.
An MRI on October 6 showed a significant progress of the secondary tumors.
We decided to have a radiation treatment for these tumors and even made
a mask for Katya's face. On October 11, during our visit to OHSU for a regular
Avastin/CPT-11 infusion, Katya's neuro-oncologist, Dr. Nicholson, told us
that the primary tumor on the brainstem progressed down the pons
that chemotherapy treatment no longer worked and had to be stopped.
After additional consultations with Katya's doctors we decided not only to stop
the chemo regimen but also not to do radiation for secondary tumors (at least
for now). We (and the doctors) feel that the primary tumor is still responsible for
almost all symptoms and so new radiation will not alleviate them, but may instead
affect Katya's immune system and cause additional swelling thus
creating additional problems.
We still give Katya supplements and homeopathy mainly to support her
immune system and help with some of the symptoms.
Since no conventional treatment showing any promise in fighting
pontine glioma is now available for Katya, we considered several remaining
alternative approaches that we have not tried yet. All of them
are associated with a serious risk of worsening the quality of life
and their efficacy is not clear at all. Therefore we decided not to start any
new treatment at the moment. As a result we are concentrating our
efforts on making Katya as happy and comfortable as she can possibly
be in her current situation.
The staff of the Peace Health pediatric hospice service are helping us
with Katya's daily medical needs which, unfortunately, keep growing
During the last several days Katya's symptoms further progressed.
She can no longer walk or stand on her own and most of her waking time
she spends sitting on a sofa or in a stroller.
Her speech is getting blurred and hard to understand. She has occasional
headaches which cannot be subdued by ordinary painkillers and require
a dose of morphine.
Still Katya greatly enjoys whatever activities and simple pleasures she may get.
She likes going on trips and walks in the stroller. She has great fun
swimming in a warm pool or jumping on a trampoline with someone holding her.
She can endlessly watch her favorite movies and listen to books and fairy tales.
Also, for some mysterious reasons Katya's appetite is as good as it ever was
and is still on the rise. (And, no, she is not on
Decadron!) Even as her ability to chew and swallow food is decreasing,
she seems to be interested in expanding and diversifying her diet.
Sweets (which are no longer completely banned) remain her favorites,
but they are not the only kind that can make her happy. White bread or
unsweetened fruit jello can produce a smile on Katya's face almost as
wide and happy as a good joke or a trick. So while our mood has not
been too high lately, Katya does not allow it to go too low.
We will be putting up more frequent updates in the future and we will also
put more pictures and tell you in detail what Katya (and her court) was
doing over the last couple of months. Please check back soon.
Friday, October 20, 2006
Katya's morning routine started with a dose of morphine
after she complaied that her headache is so-o-o big (she raises her
left hand by about a foot - quite large by her standards).
Hospice sent us a high tech hospital bed for Katya.
Katya asked to place it the living room in front of a TV.
She immediately started using it and spent a lot of time
pushing buttons and lifting, lowering and turning various
parts of the bed in all thinkable (and unthinkable) ways.
Katya was having difficulty urinating for the last day and a half.
It is not a serious problem yet, since she drinks very little now
and her water supply comes mostly in the form of creamy soups,
jellos or ice cream. Still, to be prepared for future
we invited the hospice nurse to come and help to set up a catheter.
In the evening everyone went to the Akathist reading to Kleshchev's as usual.
Katya spent almost the whole evening downstairs watching movies.
Tonight she has chosen two Russian movies,
"Ali-Baba and 40 Thieves" and "The Tale of the Dead
Princess and Seven Knights." As usual, Katya showed
a great understanding of the plot and various character interactions
and was happy to provide explanations to the less advanced Arkasha and Julia.
Before leaving for home Katya went out to jump on the trampoline with Sasha.
Saturday, October 21, 2006
Today Katya woke up with headaches and was put on morphine from the early morning.
She is very weak and does not want to eat anything.
Drinking clear fluids is causing problem --
the liquids get into the wrong part
of the throat and eventually to the lungs making Katya aspirated.
The only safe way we found for getting fluinds into Katya's system
was in the form of jello or ice cream. (She does not seem to mind, though.)
When we tried to give her Koraku (it is denser liquid than water and should
be easier to swallow), Katya refused to take it without water and ended up
coughing up water and so the process was aborted.
Probably because of the accumulation of liquids in the lungs,
Katya's speech has become more "bird-like" (klekochushchaya),
but at the same time it is somewhat easier to understand.
Katya did not want to go to the pool because she felt "very tired."
Instead, she asked to go to the park to see and feed ducks and geese, but eventually
she preferred to simply sit for three hours
in her wheelchair in the sunshine just outside of the house
enjoying an unusually warm day.
In the afternoon Ella Kleshchev came. She played with Katya and fed her.
Katya cheered up a little bit and even did some math excercises with Ella.
In the evening with a help of an enema, Katya finally managed to get bowel
(and urine) movement.
Before going to bed Katya started having trouble breathing.
We found out that her oxygen saturation level got down to 80% which is very low.
Luckily, the hospice sent to us an oxygen machine, so we put Katya on it for
Sunday, October 22, 2006
In the morning Katya was lethargic and did not eat or drink at all.
The main question we were facing was whether
this rapid development of symptoms is due to tumor growth
or is caused by an edema.
In the latter case the symptoms could possibly be relived by Decadron.
The oncologists at OHSU told us that it can be either way
and to find out, we would need to do an MRI.
After talking this over and consultations with Katya's pediatrician,
the hospice and Katya herself (we told her that the drug may make her feel
better, but might make her angry - she gave it a thought and finally agreed),
we decided to try giving her a small dose of Decadron.
Since Katya could not take a pill (because of the water drinking problem),
we went for an injection and in the end "injected" 4 mg of liquid
Decadron directly into Katya's mouth using a syringe without a needle.
We did this right at the pharmacy. To everyone's great delight, the effect
was seen almost immediately - Katya became more alert and declared that she was hungry.
So from the pharmacy Katya was taken straight to the Metropol bakery
where she was offered to choose whatever sweet she likes.
She has chosen a heavy-duty German chocolate mousse cake and
devoured it with great speed. Later at home she enjoyed
an Eskimo ice cream.
With her mood and energy boosted, Katya spent several hours
outside in in her wheel chair enjoying the warm sun.
Perhaps also because of Decadron, Katya did not have breathing problems today
and her speech became somewhat clearer.
Monday, October 23, 2006
Katya cannot drink water, so to keep her hydrated
(and avoid using nasal tubes for as long as possible)
we gave her a very watery oatmeal for breakfast.
Later Katya reminded us that ice cream also contains
a lot of water and is much more tasty than oatmeal.
Katya had many visitors today.
Teacher Jane came and played with Katya and read to her.
Then the hospice nurse, Nancy Diane, came to check oxygen saturation level
(97% - very good).
In the evening Julia brought Katya a bag full of finger puppets.
When later Tolya and Sonya came, they entertained Katya with a finger puppet
We received a new medicine from Japan, Super Antigen (SAg), which was supposed
to replace Koraku in helping Katya's immune system. However, the medicine
turned out to be much less viscous than Koraku. This makes it almost
impossible for Katya to drink the liquid.
We will try to find a way of mixing it with some food which Katya
In the evening Katya took a bath. She resisted it at first, but in the end
enjoyed it. She emerged from the bathtub much more active than before and
her mischievous nature immediately displayed itself.
She said to Masha right away: "you don't love me mother!."
Luckily Masha instantly remembered the bargain they made before the bath
and responded accordingly:
"And if I give you an ice cream - will you believe that I love you?"
Katya's response to that was a big happy grin.
Today we gave Katya morphine three times, but she had no Decadron.
We wanted to check whether her improved mood and strengths yesterday
were due to Decadron and not to some other reason.
This would be a good day overall if not for one devastating news:
a three-year-old boy from Chicago, died today just four months after being
diagnosed with a diffused intrinsic pontine glioma.
Tuesday, October 24, 2006
Katya woke up early, around 7 am, very weak, irresponsive and with no
interest in food at all. The only thing she accepted into her mouth was a
couple of ice cubes.
We gave her 4 mg of Decadron and she got more alert. However, instead of
becoming more active as we hoped, Katya soon went back to sleep.
She slept for three hours and did not wake up while her teacher Jane
came and left.
Katya had many visitors during the day. Kathleen from church came and played
with Katya for a long while. Dorothy, a hospice social worker, came to check
whether Katya needs anything. By the time Julia stopped by, Decadron
apparently kicked in and Katya quickly kicked Julia out. However, these
periods of Decadron-related anger are quite short-lived, and when Natasha
came, Katya graciously did not mind her reading aloud.
In the afternoon Brad came by to pick up Sasha's lecture notes in case he would
have to replace him in class tomorrow.
The biggest hit of the day
was the visit of the Brundans' family who, as the previous Halloween season,
came to carve pumpkins for Katya. Katya got very agitated during the process.
She was directing Anya who made numerous sketches of carved pumpkins and
brought them for Katya's approval. When the pumpkins were ready, Katya
placed candles inside and lit them. Then she blew them all out.
This was a hard job for Katya, but it made
her very happy and everyone was rewarded with Katya's joyous grin.
Another thing that makes Katya grinning widely is availability of formerly
forbidden foods. Today she ate a good serving of French toasts, chocolate
mousse, the creamy part of a raspberry cake and an Eskimo ice cream (which she
consumed quickly and efficiently). At some point Katya said that she wants
to go shopping. With her voice getting weaker and less comprehensible, it
took us a while to figure this out. But then Katya made it very clear that she
plans to go to a bakery to restock our supply of sweets and also to buy some
ice cream on the way back. With our busy social life today, the shopping trip will
have to wait till tomorrow.
All attempts to give Katya fluids in a non-frozen form failed. She flatly
refused to take soup, thick drinks and even jello which she so enjoyed just a
couple of days ago. Probably this reflects a development of symptoms in
Katya's throat. The hospice workers checked Katya today and assured us that
she is not dehydrated. Apparently the small amount of liquids that she gets is
sufficient for her organism now. (And Katya promptly confirmed this by urinating
without help from outside.) Nurse Nancy Diane told us that sometimes
excess fluids in very sick patients can make them worse by accumulating in
the lungs and other vital parts. So we will not be pushing water down Katya's
throat unless really necessary.
Katya still enjoys a good joke and likes listening to books and watching movies.
Today she spent a lot of time studying albums of beautiful cities and art
galleries. More than once she used her curious little nose to help her
weakening left hand to turn the pages.
Katya speaks very little now, even though we know that she can.
Often we are able to guess what she wants. If you ask her a direct question,
she prefers to respond by gestures: touching her nose (or pressing your hand)
for "yes" and scratching or pinching you for "no". Surprisingly, with almost
a uniform weakening of all Katya's muscles, her pinching and scratching
strength remained almost intact.
Today was the first time, since the
beginning of the rapid progression of Katya's illness several days ago,
when she did not complain about headache or any other pain
and did not have morphine.
Wednesday, October 25, 2006
We continue giving Katya 4 mg of Decadron per day. It seems to
help with the symptoms and does not affect her behavior as it did during our last
year's experience with the drug. Maybe the pleasures from the sudden amnesty
for sweets outweigh Decadron's potential side effects.
As she planned yesterday, Katya went to the Metropol
bakery to choose a cake for Mitka's birthday party tomorrow.
It was a very serious decision to make and Katya had to work
hard trying many cakes in order to find one she was sure Mitka will like.
When this was done and the chocolate-raspberry mousse cake was declared the
winner, Katya enjoyed a piece of her own.
Today Katya received a box from our friends in Florida, Iwona Bernardzyk and her
husband Jeff, with a wonderful gift, a princess pinafore costume.
Katya looked at it admiringly for some time and then said
without a shadow of disappointment: A very beautiful dress, but I think
it is too large for me. I am sure, it will fit Lizka very well and will look
good on her. Besides, I see stripes of her favorite color here, so
she must truly enjoy it!
Our smart Katya was right as usual. Lizka enjoyed this unexpected present enormously.
Katya is getting less and less interested in reading storybooks and fairy
tales. With an air of someone who has seen it all,
she declared that they bore her.
But Katya's infatuation with painting and architecture albums remains
strong. Today she spent hours studying Ravenna mosaics and other pictures from
ancient Italian cities.
Thursday, October 26, 2006
The biggest event of the day was Mitka's 18th birthday.
Katya went to Mitka's house quite early.
She played with Lizka's toys for a while and,
trying to stave off hunger, ate a good size bowl of oatmeal.
Linda and Molly, Mitka and Lizka's next-door neighbors,
came to check on Katya and played with her.
Katya invited them to come visit her in her house as well.
Unlike Mitka's previous birthday, when there was only one sugar-free "healthy"
pie, this time there were three wonderful cakes. Katya helped decorate the
birthday cake with candles and she was the one who blew them out.
Everybody approved of Katya's choice and the other two cakes went well too.
After dinner, Julia staged a puppet show about a fox
and a fairy. Katya (and not
only Katya) enjoyed it very much.
(By the way, we posted some pictures from the finger-puppet
event a few days ago.)
Friday, October 27, 2006
Laura Givental came today from Berkeley for a short visit
and went with Katya and the rest of the family to the Kleshchevs'.
Besides a regular Akathist reading we celebrated a
100th joint anniversary
of four members of the group whose birthdays were this week:
Andryusha and Sasha Kleshchev, Mitka and Lena Maksakov.
Meanwhile, Katya went downstairs to watch videos. When we suggested a
couple of movies that she has at home, she said indignantly:
Do you think I traveled this far simply to watch films I know so well?
Saturday, October 28, 2006
Today Katya and Co. went for a walk along the Willamette river.
When they were passing by the Valley River Mall, they decided to go in
there to look at the animals in the pet store.
Katya laughed a lot watching baby dogs and kittens
especially the one who tried to eat her
shoe. To everyone's surprise, they left the store together with a
very cute little rabbit.
This was a gift from Laura Givental to Katya.
The pet store workers said that if Katya gets tired of it or just stops
enjoying it, they will take it back.
So far the bunny was a source of great joy to
Katya and not only.
Sunday, October 29, 2006
In church today, Katya at first was very cheerful and then got grumpy.
After church she went to Lizka's. They watched videos based on Dr. Seuss and
Maurice Sendak books. Katya laughed watching them like never before - probably
thanks to her teacher Jane and other English-speaking visitors she better understands
English humor now.
Katya is having difficulties swallowing and drinks only with the help of
a syringe (without a needle). Today she had about 25 ml of water this way
plus some fluids in ice cream form and a bit of cheese.
In the evening we cleaned her bowels with an enema.
Katya got very tired after that and immediately went to sleep.
Monday, October 30, 2006
Anya and Katya spent several hours studying family photo albums.
Anya told Katya many great stories and showed pictures from her
early child- and babyhood. Katya laughed merrily looking at
little Anya, Lizka and Katya and trying to guess who of these
funny little girls is who.
When the rabbit wet Katya's bed, Masha at first got very happy,
because she thought it was Katya's doing. Indeed
Katya drinks and eats very little.
In the evening Julia and Mitka came to visit.
They were asked to take the bunny home to Lizka,
since Katya got scratched with its sharp claws and became a bit
Tuesday, October 31, 2006
In the morning Katya got up very weak and lethargic.
Soon she went back to sleep and slept for 4 hours.
Even when she was taken to the osteopath, Katya did not wake up.
For the first time in several days Katya complained about headaches
but she did not want to take morphine.
After discussing Katya's condition with Dr. Bradshaw, we decided to increase her
Already by the evening we noticed soome improvement in her
appetite and energy.
Katya ate raspberry yogurt smoothies and was very glad to see (and eat)
karavaj (sweet white Russian bread)
that Julia brought from Hideaway Bakery.
Today Katya had many visitors including her teacher Jane and hospice workers.
In the evening Tolya and Sonya came
and played with Katya. Together they watched many Pink Panther cartoons,
still Katya's favorites.
Wednesday, November 1, 2006,
Katya's last day
In the morning Katya was having difficulty breathing.
When, at 11am she vomited and started rasping probably because of
accumulation of fluids in her lungs, we put Katya on oxygen machine. She
complained that the flow of the gas was tickling her mouth, but her mood
improved after several spoonfulls of chocolate ice cream.
At 3 pm Katya again became very aspirated.
Struggled breathing was causing her a lot of pain. We gave her additional
dose of morphine after which she got relaxed and for about an hour
listened to our farewells and expressions of love.
She even tried to joke that it looked as if it's her birthday
today because all her family gathered around her and were trying to satisfy
her every wish. Katya's last wish, by the way,
was for a piece of a strawberry mousse. When she got it, she immersed her
fingers into the cream and licked them with a happy expression on her face.
By 4:30 Katya got unconscious but her breathing became less labored (although
still rasped) and the heart slowed down.
At 6:22 pm she died.
She passed away peacefully in her home, surrounded by her family
members (parents Maria and Sasha, sister Anya, grandmother Natasha, aunt
Julia, uncle Arkasha and cousins Lizka and Mitka), Father David and hospice
workers Nancy-Diane and Dora.
Father David annointed Katya and held a short service immediately after she died.
Funeral services will be held at
St. John Orthodox Church
either on Friday or on Saturday afternoon. Please check later for exact time.
According to her wish, Katya will be buried on the grounds of
St. Paisius Orthodox Monastery
in Safford Arizona.
Last Updated November 2, 2006