Katya's Journal

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 Disneyland.

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 Wonderworker 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 Minni Mouse. 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 in 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 his blessing.

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 from Eugene).

On Tuesday the nuns held a special service for Katya.
They read and gave Katya a special hymn, Akathist 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 manatee   (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 dolphins, 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 disappointment!
Another set-back for Katya was that she turned out to be just one inch shorter than the treshold (42 inches) for the thrilling rides 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 Musya, in
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 with stoicism.

Katya looked tired in the morning and complained that she has difficulty swallowing liquids. 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 next time.

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 Masako 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 naturopath. 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 zoo stroller. 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 yesterday.

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 eating watermelon.)
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 real.

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 Sitka, Alaska.

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", Katya said.
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 ballet class. 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 hospital.
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 here.

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 remote-controlled car (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.

Friday 9/23
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.

Saturday 9/24
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.

Sunday 9/25
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 Akathist for 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.

Monday 9/26
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 right now!!" 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 pathways. These drugs are taken by mouth and are less toxic than the standard chemotherapy agents.

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.

Tuesday 9/27
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.

Wednesday 9/28
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.

Thursday 9/29
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.

Friday 9/30
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.

Saturday 10/01
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 movements.

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.

Sunday 10/02
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.

Monday 10/03
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.

Tuesday 10/04
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 medicine. 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 another.

Between the two doctors Katya and her parents visited the beautiful Portland's 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 world.

Wednesday 10/05
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.

Thursday 10/06
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.

Friday 10/07
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 medicine.
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 at first.
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 remain Russian.

Saturday 10/08
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 mind.
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.

Sunday 10/09
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 Monday. 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.

Monday 10/10
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 different houses.
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.

Tuesday 10/11
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 and gorgeous 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.

Wednesday 10/12
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."

Thursday 10/13
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.

Friday 10/14
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 nausea.

Saturday 10/15
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 food, though.)

We finally updated information on the page with Katya's treatment regimen. It was long overdue.

Sunday 10/16
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 up.

Monday 10/17
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.

Tuesday 10/18
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 a fist.
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 to cats).

Wednesday 10/19
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 from her.
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 are weakening.

Thursday 10/20
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.

Friday 10/21
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.

Saturday 10/22
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.

Sunday 10/23
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.

Monday 10/24
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 disbelief: "Mama, you know, I like it better when I behave, than when I throw tantrums!"

Tuesday 10/25
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.

Wednesday 10/26
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 the boot.

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 apples. She did not eat much of it, but she had lot of fun anyway.

Thursday 10/27
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.

Friday 10/28
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.

Saturday 10/29
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.

Sunday 10/30
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 together.

Monday 10/31
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.

Wednesday 11/16
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 medicine.

Thursday 11/17
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.

Friday 11/18
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 intravenously.
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 surgically.

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.

Saturday 11/19
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 Decadron.

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.

Sunday 11/20
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 for us.
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.

Monday 11/21
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 here?"

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.

Tuesday 11/22
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 Russian)."

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.

Wednesday 11/23
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 hours.
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:

  1. That I do not die ( Chtob ne umeret')
  2. That I become a Saint (Chtob stat' kakoj-nibud' svyatoj)
  3. That the cats do not eat Maisy Mouse
  4. That there is no war
  5. That all the bad guys become good, but only God can do that.
Thursday 11/24
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 around?!"

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.

Friday 11/25
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 Sasha.

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.

Saturday 11/26
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.

Sunday 11/27
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 presence.
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.

Monday 11/28
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? "

Saturday 12/31    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 Year!
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 Snow-girl (Lizka) helped to save the day. In the end everyone was happy especially Katya, who got to sit with Santa and even hold his staff.

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 decorations. 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 Santa Claus!

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 difficulty swallowing.

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 rare.
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 irrational requests, 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 improved.
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, Katya exclaimed:
"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:

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 major offence.)

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 nausea).

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 orange out!" 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?   J:   Yes.   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 very pleasant.
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 Pushkin's 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 herself).
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 her medicine.

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 present?"

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 ve-ery healthy.
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 beginning.
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 much!
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 naughty. 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 minutes).

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 Zakhoder's translation).

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 definition.
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 "Cloudy Morning" ("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 was ready.
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 watch Russian 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 American versions. 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, finger painting with Lizka.

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 together.

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 patient."
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 for me?" 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 condition.
And then, there was the Valentine's day with its outpouring of love and gifts.

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 soon.

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 trip.
After flying to Phoenix, they rented a car and went to St. Paisius' convent in Safford. During the two days there Katya fed animals, 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 service. 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 the monastery.

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 there yet."

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. Make-a-Wish Foundation 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 antiangiogenic activity.

Before going home from the hospital Katya spent some time in Children's museum, 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, Little princess, 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 time?
"So Barnabe got his father's razor, covered the hampster with shaving cream, and ..."
"Stop!" - said Katya - "I can't listen to it anymore -- this is too awful! 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 hands up. 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 better?"

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.
Click here 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.
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 shaking. 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 visit Katya. (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 name).

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 darkness fell.

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 Katya's words.

After the treatment Katya, Masha and Julia spent several hours in the beautiful Japanese garden, 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 unhappy.

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 Akathist 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 after 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 worry us.

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 important."

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 cake.
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 Chinese food.
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 Akathist reading. 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' for an 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 result.

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 Katya's progress. 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.

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 coordination.

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 standstill.
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 and 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 immediately started running around,   climbing upsliding 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 her medicine.
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 or Koraku.

Monday, June 5
In the afternoon Katya went for a bike ride with Sasha, Masha and Anya along Willamette river. 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 fairy tale."   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 children's store. 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 and 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 favorite stickers.
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 little nose.)

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:
dark orange, dark gray, light brown, bright red and light green.

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:

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 improves.
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
After the 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 Akathist 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 better. 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 a pool. 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 she produced.
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 they were. 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 with us. Together we are going on a camping trip to Detroit lake 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 Detroit lake 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 to Italy.

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."

brave souls (Katya among them) went for a swim in the ice-cold beautiful pool near a waterfall.
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 bridal store. 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 lake. 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 both ways.

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 classical adventures.

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 while 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 "yummy-yummy" today. 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 rapidly. 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 bad news.
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 IV shots.
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 uninterested.
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,
Osobenno dobryh.
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 interesting, 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 taught herself.

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 including Katya.
Incidentally, Princess' royal grandfather, the Thai King, was born in the same hospital as Katya, Mount 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 be recognized.

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 Princess Bajrakitiyabha.
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 Copernicus.
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.

When 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 and 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 here.

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 like royalty.

What a day!

Sunday, July 16
At church Katya was in a very good mood. She ate well and played with children after service.
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 played billiards and laughed a lot watching Joseph's (Father David's son) pet mice.

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 of Ilya Muromets stories about a popular hero of Russian folk tales (byliny).

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 properly. 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.

Avastin (bevacizumab) is a very promising anti-angiogenic drug which has shown remarkable results 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 with nurses. 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 water-guns. And Arkasha was a very convenient target for water-guns.

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):
     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.
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.

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 about content.
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 practical joke.

Later everyone went to Kleshchev's for the weekly Akathist 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?" asked Lizka. "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 Pacific coast 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 her head.

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 girl."

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 my direction.
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?
N.: No.
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.
N.: Why?
K: Oh, don't you understand ?? ...

Monday, July 31
Today Katya and Masha decided to clean up and rearrange Katya's toys.
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 engaging conversation.
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 also down.

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 doctors.
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. This 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 colossally!"
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]
L.: ...

And thus a few new words were added to our family vocabulary courtesy of our little majesty.

In the afternoon during the weekly Akathist reading 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 (odnoglazka).

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 about a remarkable barrel. 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 a workout 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:
     Devochka, devochka,    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
     Poshla pogulyat'.    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
     Uvidet' opyat'    Cannot see again
     Ved' opyat'    Because again
     Zhit' opyat' i opyat' i opyat'.    To live again and again and again.
     Podsolnukhi, podsolnukhi,    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
     Esli morgaska?    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
     Nasha nemolaska    Our noblinky...
     Nasha nemogaska    Our nowinky
     Ne nado segodnya    Please don't today
     Kraskoj morgat'    Wink with paint
     Ne nado uzh i zavtra    And tomorrow please don't
     Kraskoj morgat'    Wink with paint
     A vchera,    And yesterday
     Zachem ty ne mog    Why could not you
     Ostanovit'sya kushat' morozhenoe    Stop eating ice-cream
     Nekogda nashim    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
     A vchera,    And yesterday,
     Zachem zhe ty kushal limon,    Why did you eat lemon,
     Nekogda nashim    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
     Odnazhdy segodnya    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
     On povtoryaetsya    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
     Zhil-byl starik    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
     Roza tsvela    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
     Schastlivo---poka!    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
     Radujsya oba    Rejoyce both
     Ya i moya Sanechka    Me and my little Sanya
     No uzh papa uekhal na veki vekov    And yet Papa went away forevermore
     Vernulsya on    And back came he
     Radujsya troe    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
     Segodnya opyat'    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 juice.

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 Rose Garden.

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 which meant 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 every day.

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 the night.

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 show.

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 likes.

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:
Leo Dubinski, 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 scared.

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 Decadron dose.
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